tag:blogger.com,1999:blog-38216117139089247612024-03-12T02:16:30.376-07:00Robert's SisterAdvocating for my disabled brother, Robert, who has intractable epilepsy, unwavering faith and a delightful ability to declare everything excellent. Robert shows me everyday the power of the Magic of Excellent. Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.comBlogger491125tag:blogger.com,1999:blog-3821611713908924761.post-58103049165093717192022-05-29T13:36:00.000-07:002022-05-29T13:36:10.529-07:00Major Changes<p>I’ve been working on this post for a couple of weeks. It is very hard for me to write and might be hard for you to read. </p><p>We have made the difficult decision to find a facility for Robert. </p><p>Ugh. See? That is a hard sentence to write! I hope it wasn’t too hard for you to read. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh6kDNFlgW_vCo88p7cYi7VbvjwN4CjNj7yowlPaqyU-OTXNCbaS79eIRev6YsnA1c_GUwlTS9wCpm17Dte-dRFuOR21WVSrmJmL95PH62vjn9yKU13dFjpPnfiCEHtWratM-QFLS1jDQDqkqKVq1HcBmKDUv8YJnsCW0n8DlOkGnXY_88Kk7z_lMCcg/s1794/E1E08FE6-8752-44DD-8BBA-48EEFC3652B7.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1794" data-original-width="1440" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh6kDNFlgW_vCo88p7cYi7VbvjwN4CjNj7yowlPaqyU-OTXNCbaS79eIRev6YsnA1c_GUwlTS9wCpm17Dte-dRFuOR21WVSrmJmL95PH62vjn9yKU13dFjpPnfiCEHtWratM-QFLS1jDQDqkqKVq1HcBmKDUv8YJnsCW0n8DlOkGnXY_88Kk7z_lMCcg/s320/E1E08FE6-8752-44DD-8BBA-48EEFC3652B7.jpg" width="257" /></a></div><p>Robert has lived with us for more than nine years. For several years before that I managed his care while he was in Skilled Nursery Facilities, hospitals, Assisted Living and a Residential Care Facility. </p><p>How did we come to this decision? Why now? </p><p>We first considered hiring another caregiver. We had a caregiver before the pandemic and Robert loved her. He also went to a Day Program five days a week. Both Evelyn and the Day Program were very helpful. Then the pandemic hit and we hunkered down. His Day Program switched to a virtual program and his caregiver hung up her caregiving hat. I really don’t think a new caregiver could give us as much help as what Robert needs. (Not to mention, much of his needs are through the night and I can’t have a live-in caregiver.) </p><p>I haven’t posted much so this might be a shock to people who don’t see us every day. Heck, the decline has even been difficult for us to see and we <i>are </i>with him every day. </p><p>My daughter has been gently telling me for a while now that it is probably time to think about another living situation for him. She sees how physically demanding it is on Richard and I and she worries about our health. Even Robert’s physical therapist knows how much we do and ends up giving me tips and exercises at Robert’s therapy sessions so I don’t hurt my back when moving him. His neurologist even said we might want to start looking for a place for him before it becomes an emergency situation. </p><p><i>Hmm. I hear all of them saying something but I can’t quite put my finger on it. </i></p><p>Not surprisingly, it has been difficult for me and Richard to admit there has been such a dramatic decline. </p><p>Since moving in with us, Robert has gone from using a walker on his own to needing both me and Richard to transfer him from his wheelchair to the bed. He can walk about ten steps using his walker but only with one of us behind him, practically holding him up and definitely keeping him balanced. </p><p>Robert’s swallow disorder has caused numerous bouts of aspiration pneumonia which land him in the hospital. A related and equally upsetting change: Robert can no longer have his beloved Rocky Road ice cream! Those bits of marshmallow and nutty goodness make him choke so it’s just plain chocolate now.</p><p>In nine years, Robert has gone from mostly dressing himself with my supervision and encouragement to me bathing and dressing him. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQS8yZPnVKAE9YLSXbyqM8acCKTI-5omYub9reoJE1rO_kVa7g7inR2JB2IXTNqzGlg_3_uXbL_1YxFOs_sNyMNPXAagF6nOxSR5SHFfQHVusSep_U2I4YwkD52_WQQ1JUZM4Z0c0Bv5nfXvS5diUPri94o5TyM7SUpYxAnGfFo8dmLOQSYucOaNWwdA/s4032/IMG_3043.HEIC" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQS8yZPnVKAE9YLSXbyqM8acCKTI-5omYub9reoJE1rO_kVa7g7inR2JB2IXTNqzGlg_3_uXbL_1YxFOs_sNyMNPXAagF6nOxSR5SHFfQHVusSep_U2I4YwkD52_WQQ1JUZM4Z0c0Bv5nfXvS5diUPri94o5TyM7SUpYxAnGfFo8dmLOQSYucOaNWwdA/s320/IMG_3043.HEIC" width="240" /></a></div>Robert’s short-term memory has become non-existent. He will ask how we’re doing dozens of times during the day, even if we just left the room for a minute and returned. It’s groundhog day on repeat throughout the day. <p></p><p>He loves to look at pictures which we have throughout the house but he needs reminding who everyone is and sometimes doesn’t make the connection that Richard and I are the same people in the photos. </p><p>Robert loves his game shows and talks to Steve Harvey likes he’s his best friend but we have to be careful not to watch any of our favorite crime shows around him. If we do watch something with a disturbing scene we have to reassure Robert that it is not real. </p><p>We try to stick to game shows. </p><p>Meals take longer and longer. (I’m talking hours.) Robert is easily distracted by crumbs or folding his napkin just right. I recently learned this is called <a href="https://www.sciencedirect.com/topics/medicine-and-dentistry/perseveration" target="_blank">perseveration</a>. You can see it in action <a href="https://youtube.com/shorts/RJN7L8niok4?feature=share" target="_blank">here</a>. </p><p>Sleeping through the night is hit or miss now. We started using melatonin (at the suggestion of his doctor) which helps some. He still sometimes wakes up at 2:00 a.m., wide awake and asking if it is time to get up. </p><p>He doesn’t make the best decisions. I used to be able to leave him alone in the bathroom until I caught him trying to pull up his pants and stand up by himself (he can’t do that without falling so that is a disaster waiting to happen.). </p><p>Robert went from manageable urinary incontinence to occasional bowel incontinence to trying to stop himself from doing either once he’s in bed. He started to put tissues down his brief to stop urinating or having a bowel movement. I placed the tissues out of reach. He then just used his hands to stop urinating and to take the poop out of his brief. (Sorry for the graphic details but caregiving is messy and I don’t want other caregivers to feel alone if they’re dealing with the same situation.)</p><p>I immediately ordered onsie pajamas that zipped up in the back. There’s no way he could get the pjs off or his hands down his brief. I paid an exorbitant fee for overnight shipping but this was not a situation that was safe or healthy for him or us. </p><p>The onsie works but, unfortunately, they make him so hot! After some research, I tried a different method to keep him clean which involves putting a folded sheet across him and tucking it in under the mattress so he can’t get to the brief. It seemed like a good idea until I saw him on the camera easily maneuver around that little hack. </p><p>Back zipper onsie it is. </p><p>I have tried to stay one step ahead of his decline but it is accelerating at a rate I can no longer keep up with. </p><p>There’s been a decline. I mean, a dramatic decline in movement, cognition, memory and impulse control. All of it. </p><p>And he is not going to improve. This is his neurodegenerative process due to his numerous concussions, uncontrolled seizures, brain surgeries and medications. </p><p>What is hard for me about this decision is that he is not difficult to care for every minute of every day. He is still able to have conversations although his mumbling is much more prevalent. He is laughing at a game show as I type this. He is safe in his wheelchair, eating a snack and drinking his water while doing his puzzle book and watching whatever game show Richard put on. Taz walks by to go outside and Robert introduces himself as Robert Allen Wright then proceeds to spell it out for him. Robert pets him and tells him he loves him very, very much and asks how he is doing today. Sure, he seems to expect Taz to answer him but he doesn’t get upset when Taz stays silent. </p><p>Because I am who I am, I just keep plowing through and taking care of him while not realizing or seeing his dramatic decline. That’s what I do. I see a problem, work a problem and get through the problem. (And deny the problem if I’m being honest.) </p><p>I always had a vision of how my caregiving journey would end. Richard and I would care for Robert – in our home – and he would continue to end up in the hospital with aspiration pneumonia but one time he wouldn’t make it. I would be with him at the end just as I was for our mom and then, years later, for our dad. I am not trying to be morbid and I didn’t know exactly when this would happen but it is what I prepared myself for. With Robert’s health issues and numerous hospitalizations for pneumonia and close calls with sepsis, I thought this was a pretty good idea of how things were going to go. </p><p>I like to plan and prepare. I should be an honorary Boy Scout. </p><p>On the other hand, we all joked that he would outlive us all because, well, he’s Robert. </p><p>Funny, though, how these “plans” for the future don’t always follow the script in our heads. </p><p>So the script has to change. I don’t anticipate being able to find a suitable place for Robert until after the first of the year but I am starting the search. I have contacted his Regional Center but that is a slow process. </p><p>Our caregiving will not end but it will take on a new direction. Richard and I will still oversee his care and make sure his needs are met and he is happy. I have a feeling Robert will bring joy to his caregivers just as he does to us and all of you.</p><p>I hope you understand our decision. </p><div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com9tag:blogger.com,1999:blog-3821611713908924761.post-35263116095117304362021-09-19T10:31:00.001-07:002021-09-19T10:31:56.236-07:00 The Deep Brain Stimulator for Epilepsy: Progress<p>The <a href="http://www.robertssister.com/2021/08/the-deep-brain-stimulator-for-epilepsy_26.html" target="_blank">first time</a> the Deep Brain Stimulator was activated, Robert’s seizures <i>increased</i>. </p><p>No, that’s not supposed to happen. </p><p>I deactivated the device but hoped we would be able to somehow, eventually, use all this new hardware in Robert’s body. The leads, the battery pack – <a href="http://www.robertssister.com/2021/08/the-deep-brain-stimulator-for-epilepsy.html" target="_blank">everything he went through</a> to get it cannot be for nothing. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_6-ZRH0d6EbqwcLGmw2gF76ym0Yi0NKIf6w-ogpCJ7_L4aC3CO06byHNyLVtSgd64cHywMvcqb9fEbLRB8omzdFOFLypcgveZsea3caQOMqavnQXQiyWwvug0rTfueQ03CGV2-DBHzDsg/s2048/IMG_2548%25282%2529.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="220" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_6-ZRH0d6EbqwcLGmw2gF76ym0Yi0NKIf6w-ogpCJ7_L4aC3CO06byHNyLVtSgd64cHywMvcqb9fEbLRB8omzdFOFLypcgveZsea3caQOMqavnQXQiyWwvug0rTfueQ03CGV2-DBHzDsg/w165-h220/IMG_2548%25282%2529.JPG" width="165" /></a></div>Robert’s neurologist sent me a message to come in at the end of August to try again. I was so happy that there was another way this device just might work! <p></p><p>I had a management meeting at work in the morning and Robert’s appointment in the afternoon. My brain was getting a workout today! Good thing I had fresh memories of our beach vacation floating around in my head to keep the stress at bay. </p><p>Dr. K, Robert’s epileptologist, came into the room as enthusiastic as ever. He clearly cares about his patients and is as disappointed when a treatment doesn’t work for Robert as we are. He will not be deterred, however! </p><p>I sat with my list of questions and Robert sat with the box holding the Patient Programmer (basically, a phone with an app) and a wireless recharger (the part that goes over the battery pack in his chest). </p>Dr. K explained that he talked with Stanford who conducted the DBS study that Robert had been in. The setting they used in the study was different than what Dr. K started with during the first activation. He was confident this different setting was going to have a better result. <p></p><p>How will the setting be different? </p><p>I am not a scientist but Dr. K was both patient and brilliant at explaining the process to me. I created a rudimentary illustration to show to my fellow non-scientists (apologies to any readers who are actually scientists!). </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiecYedngGrSFrpFHZCnRwKX1Wsnhm7Fx0wByhvYngoDXPPJejbaox_MRwfkp1EvEUPLjwTyGXYq1XHq59nypwWB-tsx7UOm3Ipdi3IS0VVbh_z44lhXyyt6hSzfyNy-yDwVvNktk9HppVP/s1080/Rudimentary+illustration+of+DBS+brain+leads+%25282%2529.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiecYedngGrSFrpFHZCnRwKX1Wsnhm7Fx0wByhvYngoDXPPJejbaox_MRwfkp1EvEUPLjwTyGXYq1XHq59nypwWB-tsx7UOm3Ipdi3IS0VVbh_z44lhXyyt6hSzfyNy-yDwVvNktk9HppVP/w225-h225/Rudimentary+illustration+of+DBS+brain+leads+%25282%2529.png" width="225" /></a></div><p>Basically, the first setting had sections 1 and 2 activated. That created a constant electrical current in the brain but, for Robert, it was too much too soon and it caused him to have seizures. </p><p>For this second try, only section 1 was activated. That allows for a more diffused electrical current which should be easier on Robert’s brain. We start at Setting A which is 2 milliamps in just that section 1 (in both leads). After two – four weeks I can increase it using the Patient Programmer and move the device to Setting B. That will deliver 3 milliamps – still in both leads but only in section 1. </p><p>If all goes well, a month after Setting B is activated we can go to Setting C (4 milliamps). Dr. K says we can eventually get up to 7.5 milliamps but that there is no statistical difference in performance between 5 and 7.5 milliamps. </p><p>I asked if we should leave it on longer this time if it does cause seizures again. Maybe Robert’s brain needs to get used to it? Dr. K said that might be a solution but also explained there were other settings he could try. He sounded very confident that we would be able to find a setting that worked for Robert. He said the amount of people that have an increase in seizures from the DBS is in the single digits. We just need to find the right setting for Robert. </p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIhMkZIrgWToDmcm6CVD9vcEw-br98Y0TdfoxnPvsjvyUGTrrvzy1vpUIQXYfafcT_WLJDrgkYQQdMkwetdYLD1xk0bE-fuwW3pDmi5R4tu0olB3_c7ewcQc6ZEHPB2pKk-Pb3RIkTCDny/s500/dbs+leads.webp" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="500" data-original-width="500" height="189" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIhMkZIrgWToDmcm6CVD9vcEw-br98Y0TdfoxnPvsjvyUGTrrvzy1vpUIQXYfafcT_WLJDrgkYQQdMkwetdYLD1xk0bE-fuwW3pDmi5R4tu0olB3_c7ewcQc6ZEHPB2pKk-Pb3RIkTCDny/w189-h189/dbs+leads.webp" width="189" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Photo of leads<br />(Credit: Medronic)</td></tr></tbody></table><p>Once it was activated again, Dr. K asked Robert if he felt any tingling. Robert said he didn’t feel anything (that is not unusual but some people do have a sensation on one side of their body when it is activated. That’s nothing to be concerned about.). </p><p>We talked about reducing his medications once we know it is working. Dr. K is very concerned about Robert continuing on the Depakote since it is affecting the ammonia levels in his liver so much (which causes confusion, sleepiness and mobility issues). </p><p>If this DBS actually starts working I will be thrilled to start reducing the meds. Getting Robert to have more functionality and mobility not only helps him but us. It also would greatly help once we are no longer able to care for him (I have to think about these things). </p><p>We left the office very hopeful (at least I did; Robert had long since fallen asleep while Dr. K and I talked about him). </p><p>Robert had a couple of seizures over the next few days but nothing like when we first activated it. Eventually, they subsided. </p><p>Was this working?? </p><p>Not yet. Robert’s typical seizure cluster came pretty much on schedule (every 2 – 3 weeks) and his most recent one was a doozy. He had close to three dozen seizures in 25 minutes. Even his rescue med (Nayzilam) took longer to work than usual. </p><p>Okay. The DBS at the lowest setting is not working. We didn’t really expect that setting to be the one that works but at least it didn’t cause more seizures. </p><p>Three weeks after the initial re-activation and a week after the seizure cluster, I increased the device to Setting B. Robert did feel like he was being “tickled” once I increased the setting but it went away after a few minutes. </p><p>The plan is to increase the device to Setting C in 3 – 4 weeks. If we see fewer seizures, that’s when we can start reducing his medications. I don’t want to get ahead of ourselves or jinx anything since we just got to Setting B but we are on our way! </p><p>I hope this information helps you understand the Deep Brain Stimulator from a patient or caregiver perspective. As I mentioned, I am not a scientist or a medical professional but I am happy to answer any questions about this surgery and the whole process. </p><p>Thank you for following Robert’s journey to, if not seizure freedom, at least seizure (and medication) reduction. I know a lot of people are rooting for this to be successful! </p><p>Oh, and to everyone asking the most important question: Yes, of course, Robert got a chocolate shake after the activation by Dr. K and chocolate ice cream after the increase to Setting B! </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBD4xxocPzk8hYIqWVyQNWmp583Lj9mcYrOvdaU8KHytsVJLd9DSpe_hHnw6WbMsMi8mIT8ca1cifHcPcNOFXdzUMI6Yd2e_75flyB7s8_ERSOWXINSOVqepDwcpvB9zaUNc8FVVPQNi1a/s2048/C1E74A4E-F124-4F1A-B53E-BAC87954BDDF.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1814" height="259" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBD4xxocPzk8hYIqWVyQNWmp583Lj9mcYrOvdaU8KHytsVJLd9DSpe_hHnw6WbMsMi8mIT8ca1cifHcPcNOFXdzUMI6Yd2e_75flyB7s8_ERSOWXINSOVqepDwcpvB9zaUNc8FVVPQNi1a/w229-h259/C1E74A4E-F124-4F1A-B53E-BAC87954BDDF.jpg" width="229" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><p><br /></p><div><br /></div><div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com0tag:blogger.com,1999:blog-3821611713908924761.post-68425515095525090472021-08-26T07:02:00.001-07:002021-08-26T07:02:38.487-07:00 The Deep Brain Stimulator for Epilepsy: Take 2!<p>One of the questions asked about Robert getting the Deep Brain Stimulator was: what do we hope to get from it? </p><p>While many may think the obvious answer is to reduce seizures the more complete answer is a bit more complicated. </p><p>At this point in Robert’s life, the anti-seizure medications are what are causing so many problems. High ammonia levels (from Depakote) leading to reduced mobility and functionality and increased confusion. Vimpat literally making him lose his balance and his ability to walk (putting Robert on a very low dose has helped with seizures but any increase will negatively affect his mobility). </p><p>Robert is on five different seizure medications along with a bunch of other meds to counter-act side-effects of those medications. He’s on so many a doctor seeing Robert in the hospital questioned him being on so many and said he’s never seen a patient on that many anti-seizure medications. The doctor clearly needs to spend more time in the neurology unit. </p><p>(He tried to make changes to Robert’s medication regimen but anyone who knows me knows that didn’t happen.)</p><p><i>Our hope is that this DBS will control Robert’s seizures so we can reduce his medications and he can maybe even regain some of his functionality and mobility. </i></p><p>That’s not asking too much, right? </p><p>Robert went through the <a href="http://www.robertssister.com/2021/08/the-deep-brain-stimulator-for-epilepsy.html" target="_blank">two surgeries</a> and we were able to move up the appointment to get the DBS activated. (Thank goodness the neurologist was on standby for jury duty and could squeeze us in!) </p><p>Time to activate this baby! </p><p>At the appointment, Robert and I patiently awaited the neurologist. I reviewed my questions I had written down and Robert cracked jokes. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDKzKsewiaj0jTsOv7rScmlg2c-PB5SVEILW1wsUIpzBtQP1o1lxPO74mk-mpqbl0aJgeiyzOlnHj5N8GUg5-nayBhLI_VIJnEZdps7dJVanWrVS8InwSE8ZcW-gkujM-y9hYvtLzFAFyb/s2048/IMG_2376.HEIC" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="261" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDKzKsewiaj0jTsOv7rScmlg2c-PB5SVEILW1wsUIpzBtQP1o1lxPO74mk-mpqbl0aJgeiyzOlnHj5N8GUg5-nayBhLI_VIJnEZdps7dJVanWrVS8InwSE8ZcW-gkujM-y9hYvtLzFAFyb/w196-h261/IMG_2376.HEIC" width="196" /></a></div><p>I thought about how fascinating this device is, and, really, nothing short of a medical miracle. Leads go into the brain, hook up to a battery in the chest and it can be controlled with a phone and a hand-held programmer device that goes over the implanted battery to activate it. </p><p>Robert has been very lucky with the quality of his epileptologists even though he’s had several of them. His current neurologist (Dr. K) is kind, smart and takes his time to explain everything. He knows we’re a team and he is as hopeful about this working for Robert as we are. </p><p>Another neurologist came into the room with Dr. K and she introduced herself as a fellow. She was learning about the DBS which I didn’t mind at all. They are part of an award-winning teaching hospital and I am thrilled to have these talented doctors and students as part of Robert’s care team. </p><p></p><div class="separator" style="clear: both; text-align: left;">Dr. K explained the DBS has three settings and delivers a constant electrical current. It starts out on setting A which delivers a low electrical current, then after a month (if it’s not yet controlling the seizures), the patient (or caregiver) can move it to setting B which delivers a little more of an electrical pulse. Setting C is the highest setting and that is where most patients end up but it takes three or four months to get there after the initial activation. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKbXBkV_JZvuBeLxvLDttJz3U6Hi4trEQS97RfsDpKPNSINTG_4w2-wY4mgQ3B1VZclbsIp2FdYEecBlbCPuG0wWuvCm3Nb3pqdsGrFA5LZqDWB2PFtoUICYPZNVoYKE9kMFxHwzz4_eAC/s2048/IMG_2380.HEIC" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKbXBkV_JZvuBeLxvLDttJz3U6Hi4trEQS97RfsDpKPNSINTG_4w2-wY4mgQ3B1VZclbsIp2FdYEecBlbCPuG0wWuvCm3Nb3pqdsGrFA5LZqDWB2PFtoUICYPZNVoYKE9kMFxHwzz4_eAC/s320/IMG_2380.HEIC" width="320" /></a></div><br />Dr. K activated the device, showing me the different settings and explaining some side-effects to watch for (depression or tingling on one side of the body). He explained how to control the device at home and said I could increase it to setting B after one month if Robert seemed to be tolerating it okay. </div><p>He said another MRI may be needed to be sure the electrodes are still placed correctly but he didn’t think that was necessary just yet. </p><p>It seemed simple enough to activate and control. It’s basically an app on a phone so I was comfortable with it once I figured out how to open the app and he took me through the steps to control it. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj637jLhW_83gZ3ejfyqEQMcbR7DXSDbMlwjYFsmTxkra2IZfKKt3UPztVuNkmyEu9hKljUe94CYONdtsivYwNbBAVYKdnajrpxVm3_DvAii-6kvkfHQNshAAW40vZNFwks9fZ5gdZpsQnc/s2048/IMG_2382.HEIC" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="201" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj637jLhW_83gZ3ejfyqEQMcbR7DXSDbMlwjYFsmTxkra2IZfKKt3UPztVuNkmyEu9hKljUe94CYONdtsivYwNbBAVYKdnajrpxVm3_DvAii-6kvkfHQNshAAW40vZNFwks9fZ5gdZpsQnc/w268-h201/IMG_2382.HEIC" width="268" /></a></div><p>How will we know it is working? If Robert has fewer seizures, it is working! Simple as that. Robert’s seizures come in clusters every two to three weeks. If the clusters don’t come, it’s working. If his seizures come as frequently as usual, we move to setting B. We left the office feeling very hopeful. </p><p>This is going to work! I just know it. </p><p>The next day Robert had a seizure cluster. I brushed it off since he was “due” (his seizures are pretty regular so I didn’t find it unusual that he had any). </p><p>The day after he didn’t have any. Phew! </p><p>The day after that, he had another cluster. Then another the next day. </p><p>He continued to have seizures almost daily for six days after the DBS was activated. </p><p>This was not a side-effect anyone expected. </p><p>I was in contact with Dr. K’s office and was told on the sixth day to turn it off. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqdJ_G4iHMLtNsoOXXfS1YR6c5_LHMZ45S7-JCneWwQqTNsEF66e-qnSQPSTJLIpKNHMhRUoBzRIdqG7obkO7nrdVuhgoz44DJiI4Oed2rj15dwBTZr3MOk8kv2cqIw83NYzJKwleRY2i6/s1440/DA2903D6-A98D-48B3-9E19-9C30680EAF72.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1440" data-original-width="1440" height="278" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqdJ_G4iHMLtNsoOXXfS1YR6c5_LHMZ45S7-JCneWwQqTNsEF66e-qnSQPSTJLIpKNHMhRUoBzRIdqG7obkO7nrdVuhgoz44DJiI4Oed2rj15dwBTZr3MOk8kv2cqIw83NYzJKwleRY2i6/w278-h278/DA2903D6-A98D-48B3-9E19-9C30680EAF72.jpg" width="278" /></a></div><p>It was heartbreaking to deactivate it. Robert had gone through so much (heck, we all had) to be able to use this device and now it is causing him more seizures. Knowing he had the electronics in his head and chest and it was just sitting there, not being used, going through all the surgeries and MRIs and appointments . . . </p><p>Heartbreaking. </p><p>I turned it off but did so while hoping the seizures would continue. I’ve never wished for Robert to have seizures but just this once I wish they would continue. I was hoping the seizures were caused by something else and that it was just a weird coincidence they happened after the DBS was activated. </p><p>No such luck. </p><p>The seizures stopped. He’s had a few (his normal) since then but nothing like the daily clusters he was having while the DBS was on. </p><p>We had planned a long weekend beach vacation for later in the month and made the most of it. It was what we all needed after such a stressful and disappointing process the last few months. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKsvyZNhhCptkSCuZbPCZeKClkzAa0wiIH3z_vN3VsHNWxqAANdYYKaX2NhPKH-CFTq_ULQZ05ZpMBnVp7OHyOxH0GEpBv7Xm8gbESfgUrCQPFUVZFHYDTfdJzLrmqOXEOLU49QV4g-iZH/s2048/IMG_2546%25282%2529.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="197" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKsvyZNhhCptkSCuZbPCZeKClkzAa0wiIH3z_vN3VsHNWxqAANdYYKaX2NhPKH-CFTq_ULQZ05ZpMBnVp7OHyOxH0GEpBv7Xm8gbESfgUrCQPFUVZFHYDTfdJzLrmqOXEOLU49QV4g-iZH/w263-h197/IMG_2546%25282%2529.JPG" width="263" /></a></div><p>On the last day of our vacation Dr. K messaged me and asked if we wanted to try again with a different setting. Yes! I am hopeful there is a setting that Robert’s brain can tolerate. Maybe there’s a setting below A that we can start with instead. Maybe we need to leave it on longer than a week and let his brain adjust. Maybe we need another MRI to make sure everything is still located where it’s supposed to be. </p><p>Maybe there is still a chance for this DBS to work for Robert. </p><p>Today we go in to try again. I have more questions. Robert will have more jokes. We know we have an army of people saying prayers, sending well wishes and hoping for the best for this second try. </p><p>Hope and support are what we are hanging onto. </p><p><br /></p><div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com1tag:blogger.com,1999:blog-3821611713908924761.post-76610549329003340412021-08-15T18:56:00.000-07:002021-08-15T18:56:47.266-07:00The Deep Brain Stimulator for Epilepsy<p><span style="color: #050505; font-size: 15.3333px;">It was a whirlwind of activity after making the <a href="http://www.robertssister.com/2021/05/hail-mary.html">decision </a>in May to move forward with the <a href="https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/deep-brain-stimulation-dbs">Deep Brain Stimulator</a> (DBS) for Robert. </span></p><p><span style="color: #050505; font-size: 15.3333px;">Sure, we started thinking about it three years ago but once we made the decision this year it was a flurry of pre-op appointments, MRIs, more MRIs, CTs, surgeries, and post-op appointments. </span></p><p><span style="color: #050505; font-size: 15.3333px;">I didn’t expect as many pre-op appointments so consider yourself warned if you decide on the DBS. Robert also ended up having three MRIs which is two more than we planned for. Robert cannot lay flat on his back without pain (which I mentioned when making the appointment) but apparently that was interrupted as “oh, I’m sure he’ll be fine.” </span></p><p><span style="color: #050505; font-size: 15.3333px;">Well, no. That means he will not be able to lay still. Really. He was squirmy throughout the entire procedure which made it last even longer than it should have. It also didn’t give the neurosurgeon good enough pictures to map the DBS placement. </span></p><p><span style="color: #050505; font-size: 15.3333px;">We tried for MRI #2 (with sedation this time) but Robert fell at home the day of his appointment and was so weak I couldn’t get him in the car to get to the appointment. Through a herculean effort by the surgery and MRI schedulers, they got him in two days later. I arranged for a transport van so I wouldn’t have to count on Robert’s ability to get in and out of the car. </span></p><p><span style="color: #050505;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="color: #050505;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM-guj-2u8FxHuKg70Lwt_2VEF8tSuGSIK9wvJ8MWyCi1Ia5HFi6LgHgzDcycm8PlwDiutosy-Yh2VfeE8WmVzDOQVbntTicQiDWejt6b1ZSMJi5N8rjKYlUctClwyL-wpm_0qBo52TzW6/s2048/IMG_2264.HEIC" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM-guj-2u8FxHuKg70Lwt_2VEF8tSuGSIK9wvJ8MWyCi1Ia5HFi6LgHgzDcycm8PlwDiutosy-Yh2VfeE8WmVzDOQVbntTicQiDWejt6b1ZSMJi5N8rjKYlUctClwyL-wpm_0qBo52TzW6/s320/IMG_2264.HEIC" width="240" /></a></span></div><p></p><p><span style="color: #050505;"><span style="font-size: 15.3333px;">They tried MRI #2 with a light sedative which didn’t work so they had to completely put him under. Finally, the MRI was done! </span></span></p><p><span style="color: #050505; font-size: 15.3333px;">Surgery was scheduled for the following Monday morning (again, we relied on a transport van and ended up using a couple of different transport services for all of Robert’s appointments and surgeries just to ensure we got to each one). As Robert was getting prepped for surgery the surgeon came in and said the MRI wasn’t done properly (the surgeon ordered three particular scans and only two of them were done). He couldn’t place the DBS without another MRI and he wasn’t sure if the MRI could be done that morning because of all the moving parts (holding a surgery room for post-MRI, getting the anesthesia team on board to put him under for the MRI, and figuring out if there was even an MRI machine available!). </span></p><p><span style="color: #050505; font-size: 15.3333px;">It's 6:00 a.m., it’s taken a huge effort to get Robert to this point and now we may not be able to do the surgery today? I wondered if this was a sign. Maybe we shouldn’t do the surgery after all. I stared dumbfounded at the surgeon. </span><span style="color: #050505;"><span style="font-size: 15.3333px;">A few tears of frustration leaked out. </span></span><span style="color: #050505; font-size: 15.3333px;">He was very apologetic, the nurses said they never had seen this happen before, everyone said how the MRI team never makes these mistakes and it was unheard of to see this happen. </span></p><p><span style="color: #050505; font-size: 15.3333px;">I get it. Mistakes happen. The whole MRI situation was chaos anyway so maybe the techs were overworked that day trying to squeeze us in and just got sloppy. Whatever the reason, the end result was Robert had to get another MRI before he could get his surgery. </span></p><p><span style="color: #050505; font-size: 15.3333px;">The surgeon was impressively calm talking to me about the situation but I could tell he was on a mission. I don’t know what he did or how he did it (or if anyone got fired over this ordeal) but he made the MRI happen. Robert was rushed off to get an MRI with the plan to do the surgery immediately afterwards. When Robert was wheeled away, the surgeon told me he was not even sure the hospital would hold open the surgery room for as long as he needed but he was going to give it a shot. </span></p><p><span style="color: #050505; font-size: 15.3333px;">That was surgery number one. The MRI got done (properly), the surgery room was held open and Robert got part one done of the DBS </span><span style="color: #050505;"><span style="font-size: 15.3333px;">implant</span></span><span style="color: #050505; font-size: 15.3333px;">. </span></p><p><span style="color: #050505; font-size: 15.3333px;">I am incredibly fortunate that none of this rattles Robert. He doesn’t worry, he just always goes with the flow with a smile for everyone no matter what is going on around him. </span></p><p><span style="color: #050505;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="color: #050505;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhlVpgtzt4gB_4wKpNKNi2CEPXTd9Uufpai5G66qSBFr1uudMFyScW3TTbX8glKpVU5Q2UmPRKPTUSJj9-vklEvbuNMoA-wfrqtZfXZFsa4C_4b9uKJu6mvtnh2xgMMdsxAFi9ETLXQ4Fd/s2048/IMG_2286.HEIC" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhlVpgtzt4gB_4wKpNKNi2CEPXTd9Uufpai5G66qSBFr1uudMFyScW3TTbX8glKpVU5Q2UmPRKPTUSJj9-vklEvbuNMoA-wfrqtZfXZFsa4C_4b9uKJu6mvtnh2xgMMdsxAFi9ETLXQ4Fd/s320/IMG_2286.HEIC" width="240" /></a></span></div><p></p><p><span style="color: #050505;"><span style="font-size: 15.3333px;">Usually, patients are in the hospital for just one night after the first surgery. Robert stayed three nights due to chest congestion and his white blood count going up. I was worried about aspiration pneumonia and insisted he get put on antibiotics before it got out of control but the doctors wouldn’t do it. (I was so insistent that a nurse practitioner put him on them for a day before the doctor overrode her.) </span></span></p><p><span style="color: #050505; font-size: 15.3333px;">The DBS is implanted in two stages. The leads are placed in the brain during the first surgery and the battery is placed in the chest and hooked to the leads during the second surgery. </span></p><p><span style="color: #050505; font-size: 15.3333px;">The second surgery was much less eventful – oh, well, aside from the earthquake that happened during it. Apparently, we felt it in the waiting room, the nurses felt it during surgery but the surgeon didn’t notice it at all. Because, apparently, he has one setting: cool as a cucumber. </span></p><p><span style="color: #050505;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="color: #050505;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6ZZdNpBHC56sX3Ep-sGbYGbRMOS_PThv1OtqdrMYg1P75e5Can2wapT95OruGrVEOeLZ0KYfC3hbeV4TAApTerDsUiEE5VaLtspJXvCvpAMNnmV_43C4Cw2QLKNIcA4kdbVXEcUm-SgVj/s2048/IMG_2269.HEIC" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6ZZdNpBHC56sX3Ep-sGbYGbRMOS_PThv1OtqdrMYg1P75e5Can2wapT95OruGrVEOeLZ0KYfC3hbeV4TAApTerDsUiEE5VaLtspJXvCvpAMNnmV_43C4Cw2QLKNIcA4kdbVXEcUm-SgVj/w240-h320/IMG_2269.HEIC" width="240" /></a></span></div><p></p><p><span style="color: #050505;"><span style="font-size: 15.3333px;">The last piece of the DBS process is to have it activated. After Robert’s second surgery, we were sent home with a box containing everything needed to activate the device. The surgeon doesn’t activate it as that’s done in the neurologist’s office. The appointment should be within a week of the second surgery but ours was six weeks out. The surgeon was going to try to work some more magic and get us in sooner with Robert’s neurologist. </span></span></p><p><span style="color: #050505;"><span style="font-size: 15.3333px;">Between the surgeon’s message, my calls and the luck of the neurologist not being called for jury duty, Robert was able to get an earlier appointment. </span></span></p><p><span style="color: #050505; font-size: 15.3333px;">DBS activation was on the books! </span></p><div><span style="color: #050505; font-size: 15.3333px;">My next post will be about activating the device but I also want to answer any questions you might have about the Deep Brain Stimulator. I’m not an expert, of course, but as a caregiver who has gone through this with my brother I can possibly address some concerns or questions you have if you are considering the DBS. </span></div><p><br /></p><p></p><p></p><div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com0tag:blogger.com,1999:blog-3821611713908924761.post-81199929414748581582021-05-31T14:39:00.000-07:002021-05-31T14:39:09.200-07:00Hail Mary<p>Robert will be getting the Deep Brain Stimulator (DBS) at the end of June. </p><p>It feels like a full circle moment since at the time we started caring for him, he actually had a Deep Brain Stimulator already implanted. The DBS wasn’t yet approved by the FDA but he was in a study through the UCSF Epilepsy Center. Unfortunately, he developed an infection in the area where the stimulator part is implanted in the chest and it had to be removed. His infection was so severe that they also needed to do a separate surgery to remove the leads that are implanted in the brain and he couldn’t continue to participate in the study. </p><p>It was disappointing but at least he survived the infection. (Robert has cheated death more times than I can even count.) <br /></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5butosiA9m1ckifQ1dZJHuXDL1RCmzlQJRt_V9baJ8eWgtwTUs_FdNGh4vVqQNihP-CI_jjf5kM8xb6qZQLjc4MLXJf8Tt5kRFYbCCJz20JasMjN2f0c7uou3XqXwt6YAeRgAMSOmgawJ/s2048/Robert+-+sick.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5butosiA9m1ckifQ1dZJHuXDL1RCmzlQJRt_V9baJ8eWgtwTUs_FdNGh4vVqQNihP-CI_jjf5kM8xb6qZQLjc4MLXJf8Tt5kRFYbCCJz20JasMjN2f0c7uou3XqXwt6YAeRgAMSOmgawJ/s320/Robert+-+sick.jpeg" /></a></div>Year after the device was removed I found out that Robert was in the part of the study with an active DBS and that it had helped reduce his seizures. The DBS was eventually approved by the FDA for treatment of severe epilepsy so his epileptologist suggested it as something to consider for Robert. <p></p><p>We talked to the surgeon in 2018 and, because it was such a hectic year with my husband’s health issues (not to mention me having a stroke that year!), I put the DBS on hold. </p><p>Robert continued to decline: he had frequent clusters of seizures, reactions to medications, hyper-ammonia from medications, worsening of mobility, functioning and memory (a result of a combination of seizures, medications and his neurodegenerative process). </p><p>The doctors tried new medications; various doses of medications; weekly physical therapy. </p><p>Richard and I tried a home caregiver (fantastic but she can’t help with Robert’s worsening physical mobility); we adjusted how we care for Robert (forget about daily baths or even street clothes); bought a new bath chair and a bedside commode. We learned tricks from the physical therapists on how to move him without hurting ourselves. We learned from the hospital nurses how to change him in bed when he was having a really bad day. We have a script for a hoyer lift. </p><p>The doctors adjusted to the decline. We adjusted to the decline. Robert continued to say he was doing “super, amazing, excellent and great” and didn’t even seem to notice a decline. (Only rarely does he get frustrated with his inability to stand or transfer.)</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuWGxA5-PIwaZLToVFYafj7kNjQW9V4bNS4thlzxS8-fpYoJL3toXizosBEl1g747bgSjmdGsDxzprXiTudArGvcxOqI08MGAi9AZnR6_lnRlTgE_mZW5sWhBTANO6vqO6eUKO09otW7sd/s2048/Robert+-+ice+cream.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuWGxA5-PIwaZLToVFYafj7kNjQW9V4bNS4thlzxS8-fpYoJL3toXizosBEl1g747bgSjmdGsDxzprXiTudArGvcxOqI08MGAi9AZnR6_lnRlTgE_mZW5sWhBTANO6vqO6eUKO09otW7sd/s320/Robert+-+ice+cream.jpeg" /></a></div>Robert’s support team has a deep bench (as they say in football) and we made as many adjustments as we could but, at this point, we need a Hail Mary. <p></p><p>I’m a huge fan of college football so I know a Hail Mary can work and it’s so exciting when it does. But that period when the ball leaves the quarterback’s hand and is sailing through the air and you don’t know if it’s going to be caught – that’s when you hold your breath and pray. </p><p>Robert has prayed his entire life for his seizures to go away. </p><p>Moving forward with the DBS is probably the last chance we will have to give him that. </p><p>I personally don’t think it will completely take away his seizures but I do hope this device will give him better seizure control. My hope is that it will allow us to reduce Robert’s medications which would then help with his mental fogginess and, maybe - just maybe - even improve his mobility. </p><p>That’s my hope. Maybe it’s more of a wish. It is probably as likely to happen as Robert’s prayers for zero seizures but I need to give him this chance. </p><p>I need to try the Hail Mary. </p><p>We will worry later about what comes next if this doesn’t work. </p><p>For now, we have one more chance for a win. </p><p>Time to hold our breath and pray. </p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg2JKOEA_vyjHUgT8y3FFs9mfEyMwLfmg5VUnMEg0poVbrkUIWBz2C1rFwViuXfXZcOLwEWRatuJbGsBn6P71Ak1LSose5B0VHq-NChcPxBqHMZwoOFuzY17mZ2RLzZSN5KlaIWLJLTrjR/s2048/Robert+-+cards.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg2JKOEA_vyjHUgT8y3FFs9mfEyMwLfmg5VUnMEg0poVbrkUIWBz2C1rFwViuXfXZcOLwEWRatuJbGsBn6P71Ak1LSose5B0VHq-NChcPxBqHMZwoOFuzY17mZ2RLzZSN5KlaIWLJLTrjR/s320/Robert+-+cards.jpeg" width="320" /></a></div><br /><p><br /></p><div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com1tag:blogger.com,1999:blog-3821611713908924761.post-89826132608897236422021-03-02T08:18:00.000-08:002021-03-02T08:18:53.185-08:00The Vaccine with a Side of Guilt<p>It's taken me a few days to post this because, well, I don't like being judged. (Just wait until I post this on Twitter!) </p><p>I am prone to feeling guilty about everything anyway but this might be something others can relate to so will risk the judging. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCJJ-Cik204UqK8P7vn8BMduYQzcaOjLVjqyNRtrXN5_CaaA3AKor1Y-HTetUa4FSWKHl2ZgYMj_b3lgD3O8kSxMOUr93_w72_CMBhUaY2A8sCCjG44QsGJLvf7qryE-uyAtCxdlwE2zht/s2048/IMG_0969.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="2048" data-original-width="1539" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCJJ-Cik204UqK8P7vn8BMduYQzcaOjLVjqyNRtrXN5_CaaA3AKor1Y-HTetUa4FSWKHl2ZgYMj_b3lgD3O8kSxMOUr93_w72_CMBhUaY2A8sCCjG44QsGJLvf7qryE-uyAtCxdlwE2zht/s320/IMG_0969.jpg" /></a></div><p>Because Richard and I are IHSS certified in California in order to care for Robert, we are eligible to get the vaccine. Richard got his appointment first but I had trouble getting one (mainly because I completed the survey incorrectly!). Rachel & Matt helped me secure an appointment when more sites opened up so I got my first shot last Friday. I definitely don't feel like I should be in the same category as "real" healthcare workers but I have a letter from IHSS that says otherwise. But, you know, guilt. </p><p>What I feel really guilty about is that Robert also got his shot. The nurse who gave Richard his shot said Robert would be eligible under the care home category (which, in California, is in the same category as the healthcare workers). We're not actually a board & care home but the nurse said he qualifies. So Robert and I had our appointments on the same day. I was prepared to hand over my IHSS letter. No one asked for it. I was prepared to answer questions about Robert's eligibility and accept he wasn't eligible but there weren't any questions. </p><p>We both got our shots. (And Robert got a chocolate shake afterwards for being such a good sport about it.)</p><p>I got a heaping serving of guilt. I feel guilty that maybe the nurse gave Richard wrong info and Robert really doesn't qualify; I feel guilty that I believed the nurse even though it didn't seem quite right; I feel guilty that we got our shots before others who need a shot got theirs; I feel guilty as a mom getting my shot before my kids get theirs (I recognize that as run-of-the-mill, typical mom guilt). </p><p>So, yeah, guilt. </p><p>I don't know if anyone else feels guilty about getting the shot before others do but I'm guessing there are a lot of us. Hoping the supply and distribution of the vaccine ramps up so everyone who wants a shot can get one. </p><p>And I can stop feeling guilty! </p><div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com2tag:blogger.com,1999:blog-3821611713908924761.post-7961094488030416282020-10-11T17:05:00.000-07:002020-10-11T17:05:28.777-07:00Looking for Answers<p>Something is going on with Robert that I haven’t yet figured out. </p><p>During the eleven years Richard and I have cared for Robert, there has been a dramatic decline in his functionality and mobility. It isn’t a straight downward decline but more like going down a staircase. Robert is stable for a while, then gets sick and loses some functionality and goes down to another step. He stays at that step for a while then gets sick again and we repeat the process. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhzydHQ5kJQdSe3IvkXkzpvymV06m7HK5_ozckkQjFlYvVsaiiz0csXMABrKlZcFnNURvQcIiTZovm1cu3vhfpa_00ICozyPs2RT-mpGcRM6-vXwouUA3eTquI1z0JZJ4B_yGYOM33EqFs/s2048/1+-+robert+in+bed.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="2048" data-original-width="2048" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhzydHQ5kJQdSe3IvkXkzpvymV06m7HK5_ozckkQjFlYvVsaiiz0csXMABrKlZcFnNURvQcIiTZovm1cu3vhfpa_00ICozyPs2RT-mpGcRM6-vXwouUA3eTquI1z0JZJ4B_yGYOM33EqFs/s320/1+-+robert+in+bed.jpg" /></a></div>In the last eleven years we have gone down a lot of steps. <p></p><p>Keeping Robert at baseline means doing my best to prevent him from getting sick. Seems easy enough but he gets sick not just because he picks up germs from other people but because he has a swallow disorder and easily aspirates which turns into pneumonia (which leads to another step down the staircase). </p><p>Robert’s bouts of decreased mobility are usually explained by three things: the flu, aspiration pneumonia or as an indicator of seizures (the prodromal phase). </p><p>He has very specific symptoms when he is getting sick. Increased pulse rate, decreased blood pressure, lots of confusion and weakness making it difficult to stand, walk or even transfer. If he has the flu or pneumonia he also runs a fever. </p><p>When his seizures are coming he has a high pulse rate and he’s confused. </p><p>Once we figure out what is causing these symptoms we can move on to treatment (rescue meds for seizures and usually the hospital for aspiration pneumonia or the flu since that usually turns into pneumonia). </p><p>I love puzzles but this can get complicated. </p><p>Robert started having worsening mobility and confusion about a month ago. He is acting just like he always does when he is getting sick. </p><p>However, his vitals are fine. His blood pressure is lower than normal but I attributed that to his overall weakness. </p><p>Since March, Robert has left the house only for physical therapy and for his flu shot so I knew it was highly unlikely he picked up COVID-19 or the flu. </p><p>He has had more frequent aspirations and choking episodes but he would run a fever if that was turning into pneumonia. </p><p>He had seizures one day during all this but not since. </p><p>There is something wrong but it’s not his usual three issues. </p><p>His GP moved back east and Robert was not set up with a new doctor yet so I reached out to his movement neurologist. She keeps an eye on his parkinsonism and knows how fragile he is. She speculated that he may have a urinary tract infection (UTI). This would explain the confusion and the mobility issues! She’s a genius! Robert would be good as new in no time! </p><p>Catching the urine was a whole other issue but I finally got some. Just a little but enough to run the test. </p><p>That came back normal. </p><p>Ugh! I was really hoping for a UTI! (I know that probably sounds ludicrous to anyone other than a caregiver but I just wanted an explanation.) The neurologist said it is possible “this represents progression in his underlying neurodegenerative process.”</p><p><i>No. That’s not what I want to hear. I want to find a problem that we can fix. </i></p><p>I was so frustrated that we didn’t have any answers that I asked his neurologist to run bloodwork to see if he had an indication of an infection and also asked for another urinalysis. Maybe if I got more urine for the test it would be more accurate. She obliged. </p><p>In the meantime, I set Robert up with a new GP. </p><p>I took him in for the bloodwork. Later that day, I was able to get a full cup of urine! I was never so happy to see so much pee! I rushed to the lab and got there fifteen minutes before they closed. PLEASE let this give us the answers we need! </p><p>The bloodwork came back mostly normal. The urinalysis took longer but came back Friday night. There were quite a few abnormal readings but the neurologist said it wasn’t a UTI and handed me over to the new GP to follow up. </p><p>In the meantime, Richard and I have had some very difficult days trying to get him up and around (Robert is a big guy). Richard and I struggle to move Robert around. It takes both of us to get him out of bed and into a wheelchair then over to the bathroom. I’ve given up on dressing him in anything other than his pjs. (Luckily, we’re in the middle of a pandemic and wearing pjs all day every day actually isn’t all that unusual now.) </p><p>Since we can’t risk hurting ourselves we decided to try new routines and found one that is working! We are changing Robert’s brief in the morning while he’s in bed. We give him breakfast and have him drink water and juice and watch television to wake up a little bit before trying to get out of bed. That is helping! He is definitely stronger and more mobile after eating and drinking. Plus, he has a newfound love of Star Trek and who doesn’t love breakfast in bed?! </p><p>It was such a relief to find something that makes even a little bit of a difference. Just making this one change helps us so we are not hurting ourselves and it helps Robert because not being able to move is getting frustrating for him. </p><p>We still have to find the underlying issue and my hope is that it is something that can be fixed. I worry about kidney damage from all of the medications he is on but hope it’s something simple like dehydration, which we can fix. </p><p>The puzzle of Robert continues but so does our persistence in finding answers so we can slow the inevitable steps down that darn staircase. </p><p><br /></p><div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com3tag:blogger.com,1999:blog-3821611713908924761.post-58961996684582014952020-06-06T14:56:00.001-07:002020-06-06T14:56:47.828-07:00Caregiving Decisions: All Day, Every Day<br />
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Decision fatigue can creep up on caregivers. I know when I
can’t even decide what to make for dinner that my decision making ability is on
overload. (I usually end up choosing breakfast for dinner at that point – easy and
comforting!)</div>
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<o:p></o:p></div>
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The pandemic has added even more decisions for caregivers to
make.<o:p></o:p></div>
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Shortly before the stay-at-home order in California, I made
the decision to keep Robert home from Day Program. They hadn’t yet closed but he
is prone to pneumonia and it is virtually impossible to social distance at Day
Program. <o:p></o:p></div>
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I decided it was safest for Robert to keep him home. <o:p></o:p></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp6ADH_fxPuIRTgi5qspKQtEN9Rr_nJ-Jov_dDAOqcexxsDYNDmrGFGcPSc_LtFVepDTkhpWqIlS1ycCVehmARvxBCAO0mZHEDV2HhQBa8zYsZh2ac7jZ4okvXlt4ZuMDqAskdshoqSLtC/s1600/IMG_7048.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp6ADH_fxPuIRTgi5qspKQtEN9Rr_nJ-Jov_dDAOqcexxsDYNDmrGFGcPSc_LtFVepDTkhpWqIlS1ycCVehmARvxBCAO0mZHEDV2HhQBa8zYsZh2ac7jZ4okvXlt4ZuMDqAskdshoqSLtC/s320/IMG_7048.jpg" width="240" /></a>There’s no set reopening date for the Day Program but, at
this point, I can’t send Robert back. Not any time soon anyway. He loves being
with friends but I can’t jeopardize his already precarious health. I am not worried
about his lack of socializing since, with the three of us home, Robert is more
engaged in our conversations, enjoying watching shows with Richard while I work
from the home office and loves petting Taz while telling him “I love ya a lot,
Taz” several times a day. He sleeps in when he needs to and can take as long as
he wants to eat a meal (now clocking in at close to three hours – per meal!).
As an added bonus, my conversations with him involve phrases other than “hurry
up, we’re late!” <o:p></o:p></div>
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For over two months, I decided it was best not only to keep
him home from Day Program but also his weekly Physical Therapy appointments. However,
I thought he would be fine since he walks more at home than he does being in a
wheelchair all day at Day Program. <o:p></o:p></div>
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After about two weeks at home, though, he was having more
trouble with his balance and with his legs “working.” Things got worse as the
weeks went by. It took both Richard and I to get him out of the recliner to
stand. It took both of us to help him walk down the hallway, all the while
telling him how to walk and sometimes patting his leg to “cue” him. We had to
literally tell him how to move. <o:p></o:p></div>
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Move your right foot. <o:p></o:p></div>
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Move your left foot. <o:p></o:p></div>
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Keep your head up.<o:p></o:p></div>
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Push the walker.<o:p></o:p></div>
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Move your right foot.<o:p></o:p></div>
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Move your left foot.<o:p></o:p></div>
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Keep your head up.<o:p></o:p></div>
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Push the walker. <o:p></o:p></div>
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Robert’s brain was having trouble communicating with his
legs. I worried that it was because I didn’t take him to PT; I worried that it
was permanent; I worried I would no longer be able to care for him like this. <o:p></o:p></div>
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I talked to his movement specialist and she thought it was a
progression of his Parkinsonism. She felt going back to PT might help. <o:p></o:p></div>
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I wasn’t convinced it would be safe to take him so mulled it
over a while longer. <o:p></o:p></div>
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Soon thereafter, Robert fell three times within a week. The
third time landed him in the ER to get checked out (nothing broken; no
concussion). <o:p></o:p></div>
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I called PT to see what their protocols were so I could
weigh the risks. They provide everyone with masks, limit the number of people
in the waiting room and gym area and thoroughly sanitize after each patient
session. <o:p></o:p></div>
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I decided it was time to get him back to PT.<o:p></o:p></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4MdgbGL06Tibv-_OnsuIm2cSufmBQEaKnescgQD-ZERzJSjo1_LpXRhF6fGEVygJRA3DR2G_WKQ9sJ9i3xdPQLi5ZdlJh49-KlvZ4UaG61WaKUViskTb4Nl15syCrQDlaGch0HkNoVCwc/s1600/IMG_1128%25281%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4MdgbGL06Tibv-_OnsuIm2cSufmBQEaKnescgQD-ZERzJSjo1_LpXRhF6fGEVygJRA3DR2G_WKQ9sJ9i3xdPQLi5ZdlJh49-KlvZ4UaG61WaKUViskTb4Nl15syCrQDlaGch0HkNoVCwc/s320/IMG_1128%25281%2529.jpg" width="240" /></a></div>
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He was happy to return to “work out” and I was happy to
learn that he still had muscle strength so I didn’t need to feel guilty about
not taking him to PT. <o:p></o:p></div>
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(Guilt is so often an unwelcome companion of
decision-making.) <o:p></o:p></div>
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The therapist mentioned that he should be sitting up instead
of in a slouched position which makes me think the recliner might have had
something to do with exacerbating his decline. I also decided to slightly
reduce one of his anti-seizure meds that I know affects his mobility. It had
been increased to the current dose in January but maybe a slight reduction
would give him the “boost” his brain needed. The risk is that we will see an
uptick in his seizures. <o:p></o:p></div>
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I have to decide between mobility and an increase in
seizures. <o:p></o:p></div>
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For now, Robert is going to PT weekly again, his problematic
medication was slightly reduced and he does not sit in the recliner
(thankfully, he hasn’t even asked about it!). <o:p></o:p></div>
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All these decisions have helped. He is still not as mobile
as he used to be and I haven’t dared see if he can walk down the hallway yet
but he’s better at transferring and standing up. <o:p></o:p></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvMpSF2_d6POXxPspZs4E2t504sC4-ZF2MbN9HuoqZz63UhNE2jaVHCEFsfKLnXM5CutggvVFTXDUEhbQ-RPu-a3MJJ_IGVOymxPl05pWkR4ocz8c9NhTRfTbH_X2kwt4Nnzlngv2e5EJJ/s1600/IMG_0969.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1203" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvMpSF2_d6POXxPspZs4E2t504sC4-ZF2MbN9HuoqZz63UhNE2jaVHCEFsfKLnXM5CutggvVFTXDUEhbQ-RPu-a3MJJ_IGVOymxPl05pWkR4ocz8c9NhTRfTbH_X2kwt4Nnzlngv2e5EJJ/s320/IMG_0969.jpg" width="240" /></a>With all the mobility issues, I decided to let go of his
daily showers since he doesn’t have the stamina for that and I let go of the
idea of putting him in pants and a shirt every day since I don’t have the
stamina for that. Some days he is in pajamas all day and that’s fine for both
of us. <o:p></o:p></div>
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These are just a few of the decisions Richard and I grapple
with while caring for Robert during the pandemic. There are others, of course.
Do we all wear masks when we venture out? (That’s a resounding yes.) Do we go
out to eat? (No, that is not a good decision for us right now.) Do we order
take-out? (We didn’t for a couple of months but we do occasionally now.) Do I
keep Robert’s non-essential medical appointments? (No, it’s only essential
appointments for now, of which PT is included.) <o:p></o:p></div>
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Caregivers make decisions every day, all day long. They may
not be the decision that other caregivers would make but each caregiver knows
what is best for them and their loved one. <o:p></o:p></div>
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What works for someone else may not work for you. Sometimes
we might even make a decision and then change our mind! That’s allowed! <o:p></o:p></div>
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And sometimes you can give your brain a break and let
someone else decide what is for dinner (let me help you: breakfast for dinner
is always a good decision!).<o:p></o:p></div>
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<br /></div>
<div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com0tag:blogger.com,1999:blog-3821611713908924761.post-42157682993367814142020-05-31T20:51:00.000-07:002020-05-31T20:51:32.161-07:00Making Decisions: A Lesson From Dad<br />
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The topic of "decisions" has been on my mind
lately and I now realize why. </div>
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Dad died ten years ago today and he made his own
decisions about treatment for his kidney failure (deciding against it). It was not the decision I would have made for him but,
strangely enough, I have to make a similar decision about my puppy, Taz (he's 7
but always my puppy). Taz doesn't have cancer but he has a parathyroid tumor
causing hypercalcemia, requiring surgery. Without it, Taz could eventually go
in to kidney failure.</div>
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<o:p></o:p></div>
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<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8kMK4cdySue2riI8It33OCXOXt0Eyk1K53oQcMnaNheRXIL-Bshg02uQtgvlWNYz2kCow4GJ-dlzXKa5CGANg4gUHICNjO5XkUBzjkWMViqvo7WlsD-TzrZeQGs0ZRGF0P_i2xRpSnl6Q/s1600/AL+Photo+2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1367" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8kMK4cdySue2riI8It33OCXOXt0Eyk1K53oQcMnaNheRXIL-Bshg02uQtgvlWNYz2kCow4GJ-dlzXKa5CGANg4gUHICNjO5XkUBzjkWMViqvo7WlsD-TzrZeQGs0ZRGF0P_i2xRpSnl6Q/s320/AL+Photo+2.jpg" width="273" /></a></div>
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Taz is the most temperamental dog (or cat for that matter)
that I've ever had. He's picky about his food, doesn't like to be disturbed
when he's asleep (but loves to hog the bed), gets grumpy with other dogs when his tummy hurts and
absolutely refuses to take medication. Both our vet and dog walker said he is
the original social distancer but if you're in his tribe (or eventually lets
you in to his tribe), he adores you, cuddles with you and makes you feel like you’re
his favorite person in the whole world! <o:p></o:p></div>
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<br /></div>
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The surgery requires a several day stay in the doggie ICU after
surgery and, quite possibly, <o:p></o:p></div>
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medication for life. <o:p></o:p></div>
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I honestly don't know that I want to put my little sensitive
guy through all that. <o:p></o:p></div>
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<br /></div>
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For a long time, I was upset with Dad for choosing not to
investigate the cause of his kidney failure (most likely, his cancer had returned) much less treat it. I have come to
realize that was the best choice for him. <o:p></o:p></div>
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We all have to make our own decisions. <o:p></o:p></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgW5AjBaMPB-NT0yxsZq-1FiVE7CUFkwbhI9nrWRjq_htYf7n7gLWdxF7F4-h12VKpOgvQ_C9gmUvdpnaAFA4t9BYFkPwXTHzyqcmwdV5UxiDhHoPMMcFJ_rZXV9gcCXyzSdLgw7J4JmIpB/s1600/image%2528392%2529.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1024" data-original-width="768" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgW5AjBaMPB-NT0yxsZq-1FiVE7CUFkwbhI9nrWRjq_htYf7n7gLWdxF7F4-h12VKpOgvQ_C9gmUvdpnaAFA4t9BYFkPwXTHzyqcmwdV5UxiDhHoPMMcFJ_rZXV9gcCXyzSdLgw7J4JmIpB/s320/image%2528392%2529.jpeg" width="240" /></a>We haven't decided about Taz yet but I am enjoying each day
with him while I mull over the options.<o:p></o:p></div>
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<br /></div>
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As for Dad, he was an avid individualist full of
contradictions which was both maddening and fascinating. He would never listen
to reason but he was one of those people who would light up a room with his
presence. He adored his kids and grandkids but was married and divorced more
than a couple of times. He made and lost a boatload of money and then made it
again (and lost it). He didn’t have a lot of friends but people loved to be
around him!</div>
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<br /></div>
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He had the bluest eyes I've ever seen and a mischievous grin
that he flashed not only throughout his life but at his granddaughter, Rachel, as
he was dying.<o:p></o:p></div>
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<br /></div>
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I used to get so mad at him for a million different things
(all absolutely legit, believe me) but I also recognize that I have wonderful
memories of him and wouldn’t be the person I am today without his influence (whether
it was negative or positive). <o:p></o:p></div>
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<br /></div>
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Of one thing I am sure and Rachel reminded me of this today:
I was his favorite daughter. <o:p></o:p></div>
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<br /></div>
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(As his only daughter, it was a fun little running joke we had my entire life.) <o:p></o:p></div>
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<br /></div>
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Make the decisions that are right for you. Enjoy every
moment with the people (and animals) in your life and every now and then, flash
a mischievous grin – just for the heck of it. <o:p></o:p></div>
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Miss you, Dad. Don't cause too much trouble up there. </div>
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<br /></div>
<br /><div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com0tag:blogger.com,1999:blog-3821611713908924761.post-7526675225761408112020-04-22T20:05:00.000-07:002020-04-22T20:05:17.573-07:00Tips to Help Caregivers Manage during this Pandemic<br />
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The COVID-19 pandemic put much of our world on pause. Millions
have lost their jobs or have seen a decrease in their work hours. Small
businesses are going out of business or, at the very least, struggling to stay
afloat. In the US alone, hundreds of thousands have been or are sick and tens
of thousands of people have died. Families are caring for sick loved ones and
grieving those they have lost.</div>
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<o:p></o:p></div>
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<br /></div>
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Life is very, very different. <o:p></o:p></div>
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<br /></div>
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Life is different for caregivers, too. More than 40 million
people in the US provide care for a loved one or friend and a great many of
those are also employed. With the stay-at-home orders, loss of income,
difficulty getting supplies, and the lock down of many hospitals and care
facilities, the stress on caregivers and those they care for is at an all-time
high. <o:p></o:p></div>
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<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEht-vxCLtTOtV8zFu8iBr2puEsYBPm7GvBuGmoEM2v9Nv2e5IWzIdix4YeNcMqR7lKDVLD5WMt1TWMQ7l2NQjyu0hGCQ0Dczo3sMt2_daYtjJSUZF35WuhorPw7XiKIldnIqyTi4W96B_Yu/s1600/IMG_0969.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1203" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEht-vxCLtTOtV8zFu8iBr2puEsYBPm7GvBuGmoEM2v9Nv2e5IWzIdix4YeNcMqR7lKDVLD5WMt1TWMQ7l2NQjyu0hGCQ0Dczo3sMt2_daYtjJSUZF35WuhorPw7XiKIldnIqyTi4W96B_Yu/s320/IMG_0969.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Trish, Robert and Richard</td></tr>
</tbody></table>
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What can caregivers do to cope with these situations and
reduce their stress? These are a few suggestions to help you get through
this extraordinary crisis. <o:p></o:p></div>
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<b style="mso-bidi-font-weight: normal;"><u>Stay-at-home
Orders</u></b>. The Stay-at-Home orders are critical to keep people safe. <a href="https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/social-distancing.html">Social
distancing</a> works. However, caregivers who live with their loved one know it
is impossible to keep a distance while also caring for our loved one. <o:p></o:p></div>
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<br /></div>
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The best we can do is wash our hands frequently, wear gloves
and a mask when possible, and keep commonly used surfaces disinfected. Many of
us are spending even more time on caregiving duties because the outside
caregiver can no longer come over or the day program has closed. This puts an
even greater strain on us and adds to the stress of this already stressful
time. <o:p></o:p></div>
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<span style="mso-tab-count: 1;"> </span><o:p></o:p></div>
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<span style="mso-tab-count: 1;"> </span><b style="mso-bidi-font-weight: normal;"><u>Self-Care Tip</u></b>. Caregivers cannot
leave their home to get a break but we can find ways to take a break and reduce
our stress. Spending 24/7 with our loved one means we are going to get on each
other’s nerves (it’s okay; that’s normal). Find ways for both of you to have
your own time and space. Can you go out in the backyard while your loved one is
eating? Can your loved one do a puzzle book while you read in the other room?
Even spending time together doing an activity like watching a movie can reduce
your stress and keep that connection with your loved one. <o:p></o:p></div>
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<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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<b style="mso-bidi-font-weight: normal;"><u>Loss of Income</u></b>.
Losing your job or having your hours cut is devastating to someone on a strict
budget. A dramatic loss in income creates worry and stress not only for you but
your loved one as well. <o:p></o:p></div>
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<br /></div>
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While this is a terribly depressing time it is also time for
action. Apply for unemployment as soon as possible. The <a href="https://www.dol.gov/coronavirus/unemployment-insurance">CARES Act</a>
extends unemployment benefits so even if you didn’t qualify before you might
qualify now. If possible, reach out to other family members for financial help.
Contact your local food bank or <a href="https://www.mealsonwheelsamerica.org/">Meals
on Wheels</a> for help with food. Reach out to creditors and landlords or
mortgage companies to see if they can defer payments for a few months. <o:p></o:p></div>
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<span style="mso-tab-count: 1;"> </span><b style="mso-bidi-font-weight: normal;">Self-Care Tip</b>. There is nothing more
stressful than not knowing how you will pay your bills or feed yourself and
those you care for. Taking action will help get you back on your feet but it is
also critical for you to do something to reduce that overwhelming stress in the
moment. <o:p></o:p></div>
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<br /></div>
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The best way to do that is to breathe. (Bear with me.) Close
your eyes. Take a deep breath. Repeat. You need to reduce your stress if you
are going to be able to take that action described above. You need your full
energy right now and that means taking care of yourself and allowing yourself a
few moments to breathe and tell yourself you will get through this. You will.
You will get through this. <o:p></o:p></div>
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<br /></div>
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<b style="mso-bidi-font-weight: normal;"><u>Where are the
supplies?! </u></b>The lack of everyday supplies is maddening. Not to mention
caregivers needed PPEs before anyone knew what a PPE was! (We need toilet
paper, too, and it makes zero sense why there is a shortage of that right now.)
How do we get the gloves we need or masks when all the stores are sold out?
(And who the heck has all the toilet paper?) Luckily, caregivers are both
persistent and creative. A few tips to find those necessary supplies: <o:p></o:p></div>
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<br /></div>
<div class="MsoListParagraphCxSpFirst" style="margin-left: 78.0pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><u>Call your health care professional</u>. A
home health nurse, your doctor, a case worker or pharmacist might be able to at
least steer you in the right direction if not order supplies for you. We have
personally had luck with a home health nurse getting us gloves and alcohol prep
pads. We also had luck with ordering gloves through one of our incontinence
supply vendors. <o:p></o:p></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 78.0pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><u>Create online orders in the middle of the
night</u>. A friend gave me this tip and said product availability and
available delivery times were better in the middle of the night. <o:p></o:p></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 78.0pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><u>Take advantage of senior hours</u>. If
possible, take advantage of the early hours some stores are setting aside for
seniors or those with serious health conditions. I do not know if being a
caregiver of someone will get you in early but it can’t hurt to try. Supplies
seem to be more plentiful during these hours – even for paper products!<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 78.0pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><u>Ask friends and neighbors</u>. If there is a
positive in this pandemic it is the connection people are creating with others.
Neighbors are helping neighbors and friends and family are finding creative
ways to help one another. Ask these people (even if you don’t know them!) where
to find something you need.<o:p></o:p></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 78.0pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><u>Check non-traditional suppliers</u>. Some of
the essential businesses are now selling things like toilet paper and paper
towels. Check stores like Home Depot or Lowes for disinfectant wipes and toilet
paper. There are even restaurants selling not only their to-go food but also
rolls of toilet paper! <o:p></o:p></div>
<div class="MsoListParagraphCxSpLast" style="margin-left: 78.0pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><u>Make your own mask/face covering</u>.
Homemade masks and face coverings are springing up. There are a few sites to
help you make your own but this <a href="https://www.cnn.com/2020/04/04/health/how-to-make-your-own-mask-wellness-trnd/index.html">one</a>
has directions for both a no-sew version and one that requires sewing. <o:p></o:p></div>
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<b style="mso-bidi-font-weight: normal;"><u>Self-Care Tip</u></b>. Connect with others! Whether by phone,
FaceTime, email, social media or texting, it is important to stay connected
with others. Friends, family and strangers alike can not only help you find
needed supplies but can also lend support and words of encouragement while you
care for your loved one at home. <o:p></o:p></div>
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<br /></div>
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<b style="mso-bidi-font-weight: normal;"><u>Lockdown Orders</u></b>.
Not being able to visit our loved one in the hospital or a care facility is not
only tough to go through but frightening for caregivers. Just the possibility
of having to send our loved ones to a hospital is even more stressful than
usual because of the lockdown orders. There is no simple solution for this
situation. <o:p></o:p></div>
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<br /></div>
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As caregivers, we are pros at advocating for our loved ones,
keeping in constant communication with the hospital or the care facility caring
for our loved one. We are used to being right by their side during a
hospitalization and are a frequent visitor when they are in a care facility.
Right now, that can be dangerous for us and for our loved one. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The best we can do at this time is get and give information
over the phone. This is not ideal since hospitals and care facilities are
busier than ever so enlist an advocate within the healthcare system, if
possible. Do you have online access to the medical records of your loved one?
You can check on blood work and other test results once they are posted online.
Enlist your GP to see if they can get additional information from the hospital.
Implore a contact at the care facility to keep you posted on your loved one. <o:p></o:p></div>
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<br /></div>
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If possible, keep in contact with your loved one through
phone or text. However, this is not always reliable since our loved one may not
be well enough to communicate with us or they may have dementia or otherwise
unable to use a phone. Ask the healthcare professionals providing care for
other ways you can best be kept apprised of your loved one’s condition.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-tab-count: 1;"> </span><b style="mso-bidi-font-weight: normal;"><u>Self-Care Tip</u></b>. This is very
stressful situation to go through and you will need to care for yourself so
that you do not end up with your own health issues. Make sure you are eating
properly, drinking enough water and getting enough sleep. This may seem like
obvious advice but every caregiver knows that during stressful times we forget
to do all of these things. You have to stay well to prepare for your loved one’s
return home so please take care of yourself. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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Caregiving is more challenging than ever right now but we
will get through this. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Stay safe and stay well. Take care.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Trish<o:p></o:p></div>
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Trish Hughes Kreis is co-author of the <a href="http://www.lulu.com/spotlight/TrishHughesKreis"><i style="mso-bidi-font-style: normal;">365 Caregiving Tips: Practical Tips from Everyday Caregivers</i></a>
book series and works as a full-time Legal Administrator. She is also a
freelance writer who advocates on behalf of her disabled youngest brother,
Robert. Robert lives with intractable epilepsy, has an unwavering faith and a
delightful way of declaring everything excellent. Robert has lived with Trish
and her husband, Richard, for several years and they do their best to keep him
in a never-ending supply of Rocky Road ice cream, happy, healthy, and, of
course, excellent. <o:p></o:p></div>
<br /><div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com0tag:blogger.com,1999:blog-3821611713908924761.post-30048517021286408792019-10-27T19:49:00.001-07:002019-10-27T19:49:25.593-07:00The Caregiving Snowball<br />
<div class="MsoNormal">
It’s hard to tell when you’re in what I call the caregiving
snowball.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Here’s how it works: you have survived the beginning of
caregiving where everything is whirlwind: doctors’ appointments, diagnoses, documents
to create, decisions to make but then things get pretty steady. Things are
certainly not easy but steady enough to establish routines with only occasional
hospitalizations or emergencies.<span style="mso-spacerun: yes;"> </span>The
length of this period is as varied as there are caregiving situations.<span style="mso-spacerun: yes;"> </span>Some skip it altogether and go straight to
the snowball. </div>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJIl995hOjGfLBybVpPAwiby85UIPbX_uqPeQCdjimsLbSeYJrKWs1jFaPi8VGmrcripKMRbsXbhSp0CBSdfb63m2edFPmUyW8dAuIrYkrBc5IgCpz7KxCGa6-sXykVXSdvcx5Kqn5mANU/s1600/IMG_2218.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJIl995hOjGfLBybVpPAwiby85UIPbX_uqPeQCdjimsLbSeYJrKWs1jFaPi8VGmrcripKMRbsXbhSp0CBSdfb63m2edFPmUyW8dAuIrYkrBc5IgCpz7KxCGa6-sXykVXSdvcx5Kqn5mANU/s320/IMG_2218.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The crew happy to be home</td></tr>
</tbody></table>
The snowball is when things get crazy. <div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There are possibly several falls, repeated illnesses and multiple
hospitalizations or stays in a Skilled Nursing Facility. The rebounding isn’t
quite like it used to be. It takes longer to recover from pneumonia or a fall. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The days of routine look pretty good right about now.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Sometimes I wonder if we are in the snowball period with
both Robert and Carol. I think it’s really impossible to tell when a caregiver
is actually in it but, boy, it sure feels like it sometimes. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEVqj5EalPAQpdo2IdsdZiJpQoLimuqQoq4tO37gkgLpCFgq2fQzz0KnH76k1QDNU2NKb_Uwz4b4jMcIYvTbby1MA9vw0G0_Zc6ki3PCr-0rKXsURk9NgC21g8NDVMs0Ta3UhXG4tVOCW3/s1600/7D00A6D1-4F72-43C7-9F93-35ACAC7F4B4D.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEVqj5EalPAQpdo2IdsdZiJpQoLimuqQoq4tO37gkgLpCFgq2fQzz0KnH76k1QDNU2NKb_Uwz4b4jMcIYvTbby1MA9vw0G0_Zc6ki3PCr-0rKXsURk9NgC21g8NDVMs0Ta3UhXG4tVOCW3/s320/7D00A6D1-4F72-43C7-9F93-35ACAC7F4B4D.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We have to celebrate with cake!</td></tr>
</tbody></table>
<div class="MsoNormal">
Robert has gone from getting sick with bronchitis or
pneumonia one or two times a year to four to six times a year. It is getting
more difficult to treat him at home when he becomes ill because his mobility
goes out the window and he goes downhill so quickly. Not to mention the oral
antibiotics that his doctors prescribe are losing their efficacy. He requires
IV antibiotics when he’s this sick and that’s something we can’t do at home. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Recovery takes much, much longer. He may end up in the
hospital for a week but then needs a few weeks in a SNF to get his strength
back. Even when he’s back home, there is a noticeable decline. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The snowball to me means longer recovery times and a steady,
permanent decline in Robert’s overall health and mobility. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
With Carol, she may have more frequent falls and
hospitalizations but she seems to bounce back without an additional decline. At
least, if she has a decline in mobility it’s more minor than I have witnessed
in Robert. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzyYYXtatSX7-IJVoY5g65JXxfqimLbqF6qnrL7jOTAauarunzfzr5hmrdBP1O5hAGV9R7azHErGYIFMLSrKEgCaybsjE4AjUJ4-pHVuAzRzXdAsWlDm3oPjU-EnlJPMVLA_o2lRQmbnww/s1600/IMG_2215.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzyYYXtatSX7-IJVoY5g65JXxfqimLbqF6qnrL7jOTAauarunzfzr5hmrdBP1O5hAGV9R7azHErGYIFMLSrKEgCaybsjE4AjUJ4-pHVuAzRzXdAsWlDm3oPjU-EnlJPMVLA_o2lRQmbnww/s320/IMG_2215.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Freedom!</td></tr>
</tbody></table>
<div class="MsoNormal">
Both Robert and Carol are back home and the caregiving snowball
has been on my mind. They both got home on a Thursday and by Friday, Robert
couldn’t walk, had a very tight cough and was exhibiting his usual symptoms of getting
sick. His vitals were good but I was concerned, especially since he had
choked/coughed a lot during the welcome home dinner! <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
Thankfully, Robert had a scheduled appointment with his
pulmonologist who did an ultrasound to see if there was any fluid lurking in
his lungs and agreed with me that antibiotics would help stave off any possibility
of an infection. A couple of days of rest and the antibiotics as well as his
more aggressive nebulizer treatment (three times a day instead of the usual
two) seems to be working. Robert is moving around a bit better but we’re not
pushing it. He is using the wheelchair more than usual but we are also letting
him walk with the walker for short distances so he can build up his strength.<br />
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxTxZi430ufwjoZ1ZYXzRcOTmwl6rgUZyCISJXYjuzXnW7Jx-ZxwPiWgJwNxV_ZilojquDV0OIiWNatX82kZJL0Dqu7XjeqkJukqtcbmnLIW7l45oaMGmRKUc-H2ZhvHovKjG1NZsdAM6V/s1600/3B94379F-7A8F-4378-AF93-79477ECFDFF8.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1440" data-original-width="1440" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxTxZi430ufwjoZ1ZYXzRcOTmwl6rgUZyCISJXYjuzXnW7Jx-ZxwPiWgJwNxV_ZilojquDV0OIiWNatX82kZJL0Dqu7XjeqkJukqtcbmnLIW7l45oaMGmRKUc-H2ZhvHovKjG1NZsdAM6V/s320/3B94379F-7A8F-4378-AF93-79477ECFDFF8.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sleeping but happy</td></tr>
</tbody></table>
<div class="MsoNormal">
Carol is sleeping quite a bit but Richard is making sure she
is taking her medication and drinking water as well as eating a little
something. She eats then goes back to sleep. Sometimes this is an indication
she has something brewing but we are chalking it up to not getting good sleep
in the facility. (Because we are going to think positive!)<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So I don’t know if we are in the caregiving snowball yet or
not. I’m happy to have Robert and Carol home, just where they belong and whether
we are or not in the snowball really doesn’t matter since Richard and I will
move along this journey where it leads us. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am grateful to have Richard beside me during this crazy
caregiving experience and, if we are in the snowball, well – we both love a
good snowball fight so I guess things will work out just fine.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO17uWpahefYySePwPE662_jB73du8Rmg7qPCWEYGOQHuZ5fjbdjJiQCC-n5URqouMMhzvXyu0k88Hsgp1TBXdoMnhZYJj8BphBr-RbqNk_GFQVAQdaKY0P7GcbLkXj_J_ntnx7hW_tcxN/s1600/5DAEDC59-C168-4377-8A19-69FFFE097DF1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1440" data-original-width="1440" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO17uWpahefYySePwPE662_jB73du8Rmg7qPCWEYGOQHuZ5fjbdjJiQCC-n5URqouMMhzvXyu0k88Hsgp1TBXdoMnhZYJj8BphBr-RbqNk_GFQVAQdaKY0P7GcbLkXj_J_ntnx7hW_tcxN/s320/5DAEDC59-C168-4377-8A19-69FFFE097DF1.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My co-pilot</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p><br /></o:p></div>
<div class="MsoNormal">
<o:p><br /></o:p></div>
<div class="MsoNormal">
<o:p><br /></o:p></div>
<br /><div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com0tag:blogger.com,1999:blog-3821611713908924761.post-55748481149955442872019-09-29T19:02:00.001-07:002019-09-29T19:02:47.329-07:00Caregivers: We Can Do Hard Things (but Don’t Have to All the Time)<br />
<div class="MsoNormal">
I fell in love with this sign: “I CAN DO HARD THINGS.” Yes!
I can do hard things! I am proud of myself for doing hard things!</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3WZtB2v09TPNFYXl031usTPmjIDcIqQlVregFnNYtLlojGIyUi38dHfgBFDLo-_feEEnhjsKabSPTG3oFZmM2k03qsGVlor_UJ9VRokiWjAMTmUo-8OgBl81iTB9whnr72FHL8VNM-x0D/s1600/IMG_9309.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3WZtB2v09TPNFYXl031usTPmjIDcIqQlVregFnNYtLlojGIyUi38dHfgBFDLo-_feEEnhjsKabSPTG3oFZmM2k03qsGVlor_UJ9VRokiWjAMTmUo-8OgBl81iTB9whnr72FHL8VNM-x0D/s320/IMG_9309.JPG" width="240" /></a>I found it while organizing an office move. This is one of
my specialties – I’ve worked at just a few law firms but have been in charge of
at least half a dozen moves. This last big move involved more than 60 people,
half of whom are timekeepers – meaning their time is what pays our bills. Getting
them to take time out of their already busy and stressful days to prepare for
an office move requires a little bit of begging, cheerleading, humor, my best
impression of a drill sergeant and a whole lot of rolling up my sleeves to help.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In other words, it is hard work. But I CAN DO HARD THINGS! <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Other Brother’s words of wisdom ring in my ears when I am
doing these hard things: work smarter, not harder. (To his credit, Other
Brother works both smart and hard!) I understand the meaning behind these
words: be efficient! Between checklists, spreadsheets, team building and
timelines, the moves are stressful but I have earned the trust of partners and
staff alike to get us moved and up and running on schedule. So, yeah, I am
working smarter but it is still HARD. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Caregiving is like that too. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Caregivers CAN DO HARD THINGS! I work hard every single day
at keeping Robert well. I work hard to make sure Robert has the best treatment
plan for his epilepsy. I work hard to help him keep as mobile as possible for
as long as possible. I make hard decisions about Robert’s health care multiple
times a day. When Robert was hospitalized for the gazillionth time for
aspiration pneumonia I refused a doctor’s recommendation of a feeding tube for
Robert. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Why? Because one of Robert’s greatest joys in life is
eating! Even if he can continue to eat a little something with a feeding tube,
I just cannot take one of his joys away from him. Hearing the doctor – a doctor
who had never met Robert before in his life – explain to me the dire
consequences of me declining the feeding tube was HARD. I could tell he thought
I was supposed to feel a little guilty about this decision. Maybe even that I
should realize what he was saying was “for the best.” <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Standing up to the doctor and repeating my refusal of the
feeding tube was even harder than the actual decision but I had no problem
doing it. I stood up a little straighter, looked him in the eye and told him I knew
it was the right choice for Robert. (I had other doctors come in a little later
to tell me they supported my decision and, of course, Robert’s regular team of
doctors agreed with my decision.) <o:p></o:p><span style="font-family: "Times New Roman", serif; font-size: 12pt;">Robert will continue to aspirate and get
pneumonia but he can aspirate on saliva during a seizure so a feeding tube will
not completely eliminate the risk. </span><span style="font-family: "Times New Roman", serif; font-size: 12pt;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, yes, caregivers CAN DO HARD THINGS and we do them every
damn day! <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This is why I have a love/hate relationship with this sign
that alternates between hanging in my closet and sitting on a shelf underneath
some scarves. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I can do hard things. I can work smarter. Sometimes, though,
I (and probably millions of other caregivers <span style="font-family: "Times New Roman", serif; font-size: 12pt;">like me</span>) just want to take a little break.
Let’s ease up on the hard work that we know needs to be done and that we know
we can do. We need to be gentle with ourselves, pat ourselves on the back for a
job well done, for working our butts off to keep our loved one alive and happy
and joyful for as long as we possibly can.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And we need to work as fiercely hard for ourselves as we do
for others. For me, that means taking 20 minutes to walk. That means ordering
take-out instead of making dinner. That means getting a pedicure with my
daughter or taking a respite with my husband or, sometimes even, just not worrying
about my to-do list. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I CAN DO HARD THINGS but I don’t have to do them all the
time. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And neither do you. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Take your break. Be gentle with yourself. Do not let the
guilt creep in; instead, feel your own joy. Set aside that to-do list. Breathe.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Then go back to doing those hard things that are inevitable
but do them with renewed energy and peace. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com0tag:blogger.com,1999:blog-3821611713908924761.post-36437496673572612952019-08-18T20:00:00.000-07:002019-08-18T20:00:03.024-07:00Confessions of a Caregiver: Accepting Help is as Tough as Finding It<br />
<div class="MsoNormal">
</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
Certainly I don’t need help.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Robert goes to a Day Program while I work so that’s already
more help than some of the other 40 million caregivers get. I feel fortunate I
have this great resource. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Almost 11 years ago when I started caring for Robert he
could walk unassisted and get dressed by himself. He needed help with
medications, time management, toileting, and making safe and healthy decisions
(like not wearing urine soaked clothes that had dried overnight). <span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The decline has been slow and steady but brutal. It is hard
to see a steep decline when living it day to day but sometimes it hits me just
how significant of a decline it has been. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWWFGYYILXubEjzJwDJ-dM4UjEWeSXxyLvbHEqBZ1liVLFtlycb5V4ABeIKiKM2dUg90krTwK80KUg53sUNYGXDIIpqWv_2_a66w1qAfQV6Qu_uaD-nRfxpgf2Uy0fddK-LLBgxZHsYjVH/s1600/IMG_5074.jpeg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWWFGYYILXubEjzJwDJ-dM4UjEWeSXxyLvbHEqBZ1liVLFtlycb5V4ABeIKiKM2dUg90krTwK80KUg53sUNYGXDIIpqWv_2_a66w1qAfQV6Qu_uaD-nRfxpgf2Uy0fddK-LLBgxZHsYjVH/s320/IMG_5074.jpeg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Robert and Aunt Evelyn</td></tr>
</tbody></table>
<div class="MsoNormal">
After each bout of pneumonia or the onset of Parkinsonism or
the relentless, ongoing seizure clusters, Richard and I picked up the slack with
the tasks Robert can no longer manage. Dressing has gone from picking out his
clothes and prompting him to pull up his socks to completely dressing him. Walking
unassisted transitioned to using a wheelchair just for long distances to using
it most of the time. Robert may use the walker at home but he can’t do so
unassisted. We walk next to him so he doesn’t fall but he still does fall. Falling
(or almost falling) means catching him or picking him up. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
All 210 pounds of him.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Robert has developed other health issues which require
additional maintenance and medications to keep him as healthy as possible. I
now brush his teeth to reduce the bacteria in his mouth so there’s less of a
chance of pneumonia when he aspirates. We put the nebulizer mask on him twice a
day to keep his lungs open and healthy. His medications have changed and
increased so much that, for fun, I’d like to walk into a pharmaceutical school and
take their final exam to see how I do. I may not get an “A” but I think I’d
pass. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I have a strange idea of fun. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Incontinence has moved from urinary incontinence to
occasional bowel incontinence. Robert’s memory is so inconsistent that sometimes
I have to remind him which way to turn out of the bathroom to get to his
bedroom or explain that it’s breakfast time and not time for a scoop of Rocky
Road ice cream. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Still, I didn’t think we needed help. After all, there were
two of us taking care of Robert. The bulk of the physical work fell to me since
Richard has his own health issues but I was managing it okay – until I wasn’t. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My stroke last year was a wake-up call and I was determined
to make changes. I immediately started walking regularly, taking medications to
prevent another stroke and have greatly reduced my carb intake. For good
measure, I feel even more guilt than usual when I cave to those sugary
cravings. I do better about managing my stress and have no trouble saying “no”
to doing too much for too many on any given day. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My longer term goals related to caregiving were to hire a
housekeeper, take a respite and hire in-home care for Robert. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
These goals took a little bit more work but I hired
housekeepers, fired them after not showing or calling and promptly hired
another company. I absolutely love this extra help and am grateful to be able
to afford such a luxury. Richard and I took a respite within a few months of my
stroke. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Two goals down; one to go. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I started my search for in-home care by posting an ad on
NextDoor and Care.com, telling friends and family I was looking and calling
several agencies. The referrals from friends were already working elsewhere,
replies to the ads were minimal at best and the agencies either didn’t show up
or were too expensive. (One rep came in and declined my offer to talk with
Robert. She wanted to get straight to the services, their cost and even pulled
out a contract. Um, thanks but no.)<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The other problem with agencies?<span style="mso-spacerun: yes;"> </span>They only do medication “reminders.”<span style="mso-spacerun: yes;"> </span>I’m sorry, but no amount of reminding is
going to get Robert to take the correct medication. He needs to be handed a cup
with two pills at a time and told to take the meds. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Even while looking, I was having trouble nailing down
exactly what someone would do but decided a few hours a couple of days a week
would be helpful. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
One of the hardest parts of providing care to Robert is the
constant interruptions and needs. He probably needs something every ten minutes.
If it isn’t him asking for something, I am restocking supplies and medications,
doing laundry, ordering more supplies and calling medical professionals and
health agencies. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It would be nice to have a two hour break a few days a week
but because it was proving to be so difficult to find care, my head started the
excuses reel: <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
How can someone help me for just a few hours a week?<span style="mso-spacerun: yes;"> </span>Will that really be helpful?<span style="mso-spacerun: yes;"> </span>I mean, I can change him myself and let him
watch Family Feud and have a few minutes to restock or do laundry or make calls.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Plus, what about our dog?<span style="mso-spacerun: yes;">
</span>We have an older dog who doesn’t mind strangers but our “puppy” (who is
actually pushing seven years old) takes a while to welcome people into his
tribe. I wasn’t sure he would get used to someone. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfcNbHxRUbKT2RE0RvJWhIH8z6Eq5RbD-I2Y6VWWqDdCSWwamIJi-_uBKtGnavAKhYF21Az7Iaf0qvUOSX8UlNYy75xq4H58PEq7zn631nAVtVOa2jD1dRBFPU-sWtUAUxC_m3WX17Qdym/s1600/image%252844%2529.jpeg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="768" data-original-width="1024" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfcNbHxRUbKT2RE0RvJWhIH8z6Eq5RbD-I2Y6VWWqDdCSWwamIJi-_uBKtGnavAKhYF21Az7Iaf0qvUOSX8UlNYy75xq4H58PEq7zn631nAVtVOa2jD1dRBFPU-sWtUAUxC_m3WX17Qdym/s320/image%252844%2529.jpeg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Puppy and Oz</td></tr>
</tbody></table>
<div class="MsoNormal">
Other Brother asked me how my search was going and how he
could help. I appreciated his offer to help pay for services but I refused to
pay an exorbitant amount for a small amount of in home care – no matter whose
money I was spending. Especially when Robert has the benefit of IHSS hours
(which means we can hire a care provider using these hours and the state pays
the person instead of us paying out of pocket). <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I suppose that is one more excuse I was coming up with not
to hire help but I really tried to find in-home care. It just was not working
out – excuses or no excuses. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It became more difficult to find help than any benefit that
I could gain even if I did find it. I told myself that all the other changes I
had made after my stroke were enough. We were managing just fine, thank you
very much. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Over the next several months, the decline in Robert’s
mobility and health continued. There are more frequent bouts of pneumonia and
his mobility takes a worse hit each time. The last bout of pneumonia really
knocked him for a loop and he was in a Skilled Nursing Facility for a few weeks
to get intensive physical therapy. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Not showering Robert. Not dressing him. Not sorting his
medications. Not doing five loads of laundry a day (no joke). Not helping him
stand or keeping him upright while he was walking. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This was nice. I really, really liked having a break from
the physical part of caring for Robert. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We saw his mobility neurologist about a week after Robert
returned home and she saw just how much trouble he was having even just
adjusting himself in the wheelchair. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She looked at me and said, “You need to get in-home help.
This is too much.” <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I love this doctor. She cares for Robert but also cares
about the impact caregiving has on me. She is smart and helpful and kind.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And she validated that what I am doing is a lot. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
For some reason, I couldn’t do that for myself so let the
reasons for not hiring in-home care pile up. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She told me she hired caregivers for her mom who has
dementia and lives in an assisted living facility. She reminded me about
Care.com. She gave me a goal of finding a caregiver. Interview caregivers at
Starbucks, she said. Find someone you like then bring them into your home. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She gave me the steps to find someone. Her words were what I
needed to hear. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I told my best friend. I told Richard. I told Rachel. I told
Other Brother. Rachel had been trying to convince me to get help on our nightly
walks. My best friend told me she had been very close to calling Rachel and
staging an intervention so I would get some help.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
They all agreed we needed help. They knew all along. It just
took me some time to see the benefit was worth the effort. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I renewed my efforts to find help. I placed another ad on
Care.com and got several applicants this time. I took time off work and set up
interviews at Starbucks. Some showed up, some were terrible, one was most
likely impaired. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
None were right. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I continued screening applicants. I did a phone interview
and fell in love with someone but she had transportation issues. Then
scheduling issues. It didn’t look like this would work out. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Then, a miracle happened. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My son-in-law saw a post on NextDoor from a woman who only
wanted to work ten hours a week, was IHSS certified and lived a couple of miles
away. He texted me her info and I immediately called her. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She was everything I had thought would be a perfect
candidate: IHSS certified and she could work in the afternoons when Robert gets
home from Day Program.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She even liked dogs. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmmNUjzcScbWtzBJ_AvGtMpONcbryXPYrg_hP8w2H_prT6dAET7TfIdpnYx7x7Eg0WIlOHFHr7ER52VEpAJZFnWQ3oXvaMuDjrKF2NgzFAyCmvDKtsRM5wSwDn16fvv5effrptw65lg_0_/s1600/image%252855%2529.jpeg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1024" data-original-width="768" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmmNUjzcScbWtzBJ_AvGtMpONcbryXPYrg_hP8w2H_prT6dAET7TfIdpnYx7x7Eg0WIlOHFHr7ER52VEpAJZFnWQ3oXvaMuDjrKF2NgzFAyCmvDKtsRM5wSwDn16fvv5effrptw65lg_0_/s320/image%252855%2529.jpeg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Crazy Puppy</td></tr>
</tbody></table>
<div class="MsoNormal">
She came over and met Robert and Puppy. She loved Robert and
didn’t run screaming from the barking Puppy. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I hired her on the spot.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Puppy barked at her the first day and Evelyn took it in
stride. She gave him treats and Richard took him in the bedroom after a while so
she could work with Robert. I showed Evelyn the routine for after Day Program
and before we knew it, two hours had gone by. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Still, after the first day, I wasn’t sure if this was going
to work. Puppy and Richard can’t stay in the bedroom for hours every day.
Evelyn wanted someone who was mobile and Robert is, well, mostly mobile. I
worried about that “mostly” part. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And Puppy. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I felt better after Day Two. Evelyn told me she wanted to do
everything. She said I didn’t need to help her. She sweetly called me a mama
bear (I can’t argue with her there). I went in the office and worked on a
writing project. It was two hours of mostly uninterrupted time and it was
glorious. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Puppy was even warming up to her. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
By Day Three, we were calling her Auntie Evelyn and Puppy
was comfortable enough to hang around her without barking. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Day Four Richard gave her a house key. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On Day Five, Richard had his first post-surgical appointment
at the time Robert was due home and I wanted to attend with him. We weren’t
sure if Evelyn and Puppy were ready to be alone together but Evelyn said she
was ready. Puppy was ready too – he ran circles around her when she came in and
then brought her a toy! <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Mama Bear leaves them alone now; Auntie Evelyn and Robert
watch Family Feud after she gets him into his pajamas and while she folds
laundry. They laugh like old friends and are plotting how they can get on
Family Feud together. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She is everything I wanted in a caregiver. It took a year
but the effort to find help was worth it. <o:p></o:p></div>
<br /><br />
<br />
<div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com0tag:blogger.com,1999:blog-3821611713908924761.post-179845482515846972019-01-02T06:47:00.000-08:002019-01-02T07:14:18.640-08:002018: Goodbye Awful, Hello Gratitude<br />
<div class="MsoNormal">
I fully intended to write about the awfulness that was
2018. For most of the year, I have been
saying it has ranked high on the list of “worst years ever.” <br />
<br />
After all, 2018 brought us Carol passing out in
our dining room and smacking her head – lying unconscious for long enough that
I was convinced she had died. </div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHH5FHtDQfGvcuLEdq7_YlhiF38dnfv4eALYLc8K3u6NX-hGmNvoHRgyyP56a24bXyzrHm69vKnQGNpILlExF5_dZ74v-7PuQ2joy9tcczun_UkzDS6IZLbqxriLHSuuNPl_X8Mqg8_dNY/s1600/IMG_8753.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHH5FHtDQfGvcuLEdq7_YlhiF38dnfv4eALYLc8K3u6NX-hGmNvoHRgyyP56a24bXyzrHm69vKnQGNpILlExF5_dZ74v-7PuQ2joy9tcczun_UkzDS6IZLbqxriLHSuuNPl_X8Mqg8_dNY/s320/IMG_8753.JPG" width="320" /></a></div>
<div class="MsoNormal">
<br />
Robert was hospitalized three times due to a variety of reasons: the flu (even
after getting the shot), sepsis, pneumonia (twice before March), RSV (respiratory
syncytial virus), and a week-long video EEG (which caused yet another bout of
pneumonia).<span style="mso-spacerun: yes;"> </span>He had his usual episodes of
aspiration pneumonia which didn’t get severe enough to get him to the hospital
but which knocks him out for at least a week.<span style="mso-spacerun: yes;">
</span>Oh, and the usual seizure clusters (at least twice a month) which almost
seem like the least of the problems he had in 2018.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Richard underwent four skin grafts on his never-healing
wound and saw each one fail.<span style="mso-spacerun: yes;"> </span>Even after
spending many days in the hospital on aggressive antibiotics and wound
care.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And 2018 also brought me my own huge wake-up call: a stress-related stroke that left me with numbness in my thumb and face. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZamU1ssmsIex9u8ydOK2ZapLrrU9ynhzn4BGM_HAk-ScvhH-0Id8tejgaOrvKWPUTQtT3cAo5l0mnJKOGg1-Vn3Y06yaBj2gea3qYWL-PR5rO-nC3Le8Z4g4gI3ZvvgljXZ1XVJL-bT9d/s1600/IMG_0395.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZamU1ssmsIex9u8ydOK2ZapLrrU9ynhzn4BGM_HAk-ScvhH-0Id8tejgaOrvKWPUTQtT3cAo5l0mnJKOGg1-Vn3Y06yaBj2gea3qYWL-PR5rO-nC3Le8Z4g4gI3ZvvgljXZ1XVJL-bT9d/s320/IMG_0395.JPG" width="320" /></a>I almost forgot! 2018 also decided it was a good year for me to get side-swiped by a semi which left me very shook up but, thankfully, unharmed.</div>
<br />
<div class="MsoNormal">
At first glance, yes, 2018 was nothing short of awful and stressful and, most certainly, difficult.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was the most overwhelmed I have been in my ten years of
caring for Robert last January when both he and Carol were in the hospital at
the same time and Richard was still recovering from his first skin graft.<span style="mso-spacerun: yes;"> </span>And that was the first month of the year – before
the weight of the year really bore down on us! <span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I had no idea we were just getting started with our “epic”
year.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, yes, 2018 was just awful but as I was looking through my
calendar and photos from the year, I realized it was something else:
wonderful!<span style="mso-spacerun: yes;"> </span>I was so focused on how
stressful it was that I had minimized the beauty of it.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCUg4LAEMbQjp3E4vUCPsvtq594PE8VLaxVKScHA-cEk2s-d1_I3EHnra6IvgyYvBzgXHJIycK1I7zZJVYW7RzdkWUQfeTMophEHemMlFlM38pDQKBygLcEB5PBX5r6awAeA3T5vzMzk_P/s1600/IMG_9500%25281%2529.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCUg4LAEMbQjp3E4vUCPsvtq594PE8VLaxVKScHA-cEk2s-d1_I3EHnra6IvgyYvBzgXHJIycK1I7zZJVYW7RzdkWUQfeTMophEHemMlFlM38pDQKBygLcEB5PBX5r6awAeA3T5vzMzk_P/s320/IMG_9500%25281%2529.JPG" width="320" /></a>While Carol and Robert were in the hospital early in the
year, our son-in-law spent hours converting our bathroom tub into a walk-in
shower. It is not only so much easier for both of them to get in and out of but
it is absolutely gorgeous!<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My best friend married the love of her life and one of my
other dear friends drove me the five and half hours to the beautiful ocean-side
wedding so I could be there for Joelle!<span style="mso-spacerun: yes;">
</span>Sarah and I made the trip in one day so we only missed one day of work
but we had a blast surprising Joelle and she got us there and back safe and
sound (even with me cringing in the passenger seat because of the ridiculous drop-offs
on some of the “roads”).<span style="mso-spacerun: yes;"> </span>Bonus: I got to
see the ocean!! <o:p></o:p></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifSitdSVAI76x9-PHnwOAJ4noheUbB14KuCBlpq5iHGRN9Zw_FL77VYyXVMnhz4o3U-LTseyCInzXQBNZeYFGrxRhdCtFtM3dKbapbOKlmo218RHai8le-orHcnREF-KmZvzjnLYS5pZnL/s1600/IMG_9855.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifSitdSVAI76x9-PHnwOAJ4noheUbB14KuCBlpq5iHGRN9Zw_FL77VYyXVMnhz4o3U-LTseyCInzXQBNZeYFGrxRhdCtFtM3dKbapbOKlmo218RHai8le-orHcnREF-KmZvzjnLYS5pZnL/s320/IMG_9855.JPG" width="320" /></a></div>
<div class="MsoNormal">
Richard and I took a trip to Alaska – just the two of
us!<span style="mso-spacerun: yes;"> </span>It was so relaxing and so much fun
to spend time together without having to worry about hospitals, seizures,
medications or caregiving. We saw whales and seals and more bald eagles than I
thought I would ever see in my life!<span style="mso-spacerun: yes;"> </span>The
trip fueled my soul and I could feel the stress washing away.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We had a second wedding later in the year when my
step-daughter was also married and which brought an opportunity for family (including
the siblings) to be together.<span style="mso-spacerun: yes;"> </span>Two
weddings in 2018! <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our annual trip to Disneyland for Epilepsy Awareness Day
brought a reunion of sorts with my co-authors.<span style="mso-spacerun: yes;">
</span>It feels as if they are always by my side (which they are) but we rarely
are able to see each other in person. Hugging them was just what I needed in
2018.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiaiVAeKTW6pAfRHZHbeB7gjIzaPs3P2ZF0gKZEePcK66BZ8C8eM8Y_QC1NP7Bkf9b3wrmUIgZsRHk4ZXb7u9ZvyDeD7CcihNDhP0xwTClF8FgzX9tWaWaAQSJjfg1f5OjClXUqLwxt4_b/s1600/IMG_9956.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiaiVAeKTW6pAfRHZHbeB7gjIzaPs3P2ZF0gKZEePcK66BZ8C8eM8Y_QC1NP7Bkf9b3wrmUIgZsRHk4ZXb7u9ZvyDeD7CcihNDhP0xwTClF8FgzX9tWaWaAQSJjfg1f5OjClXUqLwxt4_b/s320/IMG_9956.JPG" width="320" /></a>2018 also led me to a writer’s conference which introduced
me to people I probably would have never met if I hadn’t taken the step to
attend.<span style="mso-spacerun: yes;"> </span>(I’m actually not sure I would
have pushed myself to attend if I hadn’t had a stroke.)<span style="mso-spacerun: yes;"> </span>It was out of my comfort zone but it is
possible this will lead to more exposure for our books and some wonderful
opportunities (fingers crossed)!<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And I don’t want to jinx anything but my face and hand numbness
seems to be lessoning in intensity!<span style="mso-spacerun: yes;"> </span>With
any luck, I am hoping it will go away completely.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE802zDETR_GewVQLI0FvvBhbUwCEvc_2ucBE7_X2wPhqkhTVHZ2Ot4fmwccp5nBOUg-jx6svjL9i0cqdW_kGAg5iYLxlwgRkYh3o_bDqR2kx-_f3Z5mYjpSzU0fycG5b-RqgCyHqk4vFw/s1600/IMG_3276.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE802zDETR_GewVQLI0FvvBhbUwCEvc_2ucBE7_X2wPhqkhTVHZ2Ot4fmwccp5nBOUg-jx6svjL9i0cqdW_kGAg5iYLxlwgRkYh3o_bDqR2kx-_f3Z5mYjpSzU0fycG5b-RqgCyHqk4vFw/s320/IMG_3276.JPG" width="240" /></a>When my mom became sick almost 20 years ago and we knew she
only had few months to live, our motto became “there is no time like the
present.”<span style="mso-spacerun: yes;"> </span>We visited the ocean, we
welcomed visitors we hadn’t seen in years, we shopped; we shared recipes,
watched movies and played games. If 2018 taught me anything, it was to remember
that motto and to live like there is no time like the present – whether we are
dying or not. I did not need a terminal illness to remember that lesson (although,
apparently, I did need a somewhat dramatic kick in the pants.)<o:p></o:p></div>
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Most importantly, throughout the year, I had the incredible love
and support of my family and friends. I
know many caregivers are not as lucky as I am and, unfortunately, have family
who abandon them. I am fortunate – no, I
am blessed (and I know that word is overused but I have to use it) – to have a
daughter who spends time with me and who makes me laugh; a husband who pushes
himself through pain to help alleviate my caregiving load and loves me so much;
friends who listen to me rant at any time; a son-in-law who, regardless of how
busy he is, spends hours helping us with home projects; a beloved mother-in-law who is there for both Richard and I as much as we are there for her; extended family who
make me laugh and help whenever we need it and a sibling who not only
appreciates the care I give to our brother but who is extraordinarily generous (beyond
– I mean, he gifted me with a new car for my birthday! Who does that?!?!). He is not only extremely generous but also
emotionally supportive (and even came through in a pinch when I needed someone
to stay with Robert during wedding #2). I
am happy to report that he and Taz are now pretty much best friends. <o:p></o:p></div>
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My year may have been overwhelming and over-the-top
stressful but through it all there were always smiles (sometimes through the
tears or after them). 2018 ended with
gratitude and love and the realization that we came out alive but also with a
hope for a quieter 2019. </div>
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<br /></div>
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I’m all for
lessons and challenges and don’t want to be selfish but a less eventful year
would be a welcome relief. <o:p></o:p></div>
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<br />
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Here’s wishing all of you a happy, healthy and hopeful
year! May 2019 be <i>excellent</i> for all of us! </div>
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<o:p></o:p></div>
</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEic4IzclM9WN0tVN7nmi2U912N5QGXGHsPvwVsPfmvAU1fFbfwLN3Eej2XAKnhZHnlRdePXe-fAdNoaoLOzd6Hubawi_rOyalmjdbxY-iQMzGJiP88IKMpCTpb7e2DUnimZy06fhxYK0zTq/s1600/IMG_0313.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEic4IzclM9WN0tVN7nmi2U912N5QGXGHsPvwVsPfmvAU1fFbfwLN3Eej2XAKnhZHnlRdePXe-fAdNoaoLOzd6Hubawi_rOyalmjdbxY-iQMzGJiP88IKMpCTpb7e2DUnimZy06fhxYK0zTq/s320/IMG_0313.JPG" width="320" /></a></div>
<br /></div>
<br /><div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com0tag:blogger.com,1999:blog-3821611713908924761.post-45216347679211981462018-09-05T20:45:00.001-07:002018-09-05T20:45:37.174-07:00Respite: Let’s Do This Again <br />
<div class="MsoNormal">
Richard and I have cared for Robert for ten years and five
of those have been in our home. Robert
loves to say “cheers” at dinner and usually says “cheers for our drinks” or
“cheers for a good dinner” but recently threw out “cheers to family.” He didn’t stop there: “cheers to a great
family.” </div>
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<o:p></o:p></div>
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<br /></div>
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It is those moments that make up for the challenging ones
when Robert’s medications are changed and he gets grumpy or when the physical
demands of caring for him wear me out. <o:p></o:p></div>
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Those moments are precious and I wouldn’t trade them for
anything but I have come to realize that a real respite is needed in order to
refuel.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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<br /></div>
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Caregiving is one tough job and we need to be as physically
and mental fit as possible to do it.<span style="mso-spacerun: yes;">
</span>Respite is hard to come by and shouldn’t be as tough to get as it is but
it is definitely worth fighting for.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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We were fortunate to be able to take a cruise to Alaska. I
understand just how lucky we are to have been able to take such a spectacular
trip and hope you don’t mind my sharing our respite days with you.<span style="mso-spacerun: yes;"> </span>The trip is in a couple of parts so your eyes
don’t glaze over with our vacation pictures.<span style="mso-spacerun: yes;">
</span>You can read part one <a href="http://www.robertssister.com/2018/09/respite-just-what-doctor-ordered.html">here</a>.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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<b style="mso-bidi-font-weight: normal;">Day 6 (Tuesday)</b>.<span style="mso-spacerun: yes;"> </span>We are heading into Glacier Bay today!<span style="mso-spacerun: yes;"> </span>Richard seemed to sleep okay – only waking up
a couple of times.<span style="mso-spacerun: yes;"> </span>I didn’t hear him at
all but woke up at 5:00 because somehow his watch alarm went off.<span style="mso-spacerun: yes;"> </span>Grr.<span style="mso-spacerun: yes;">
</span>Oh well, I can always go back to sleep.<span style="mso-spacerun: yes;">
</span>I was wide awake for some reason so actually didn’t go back to
sleep.<span style="mso-spacerun: yes;"> </span>I felt fairly well rested after seven
and a half hours but woke up a little grumpy.<span style="mso-spacerun: yes;">
</span>I don’t know what if it was because of the alarm or because I miss our
regular routine or something in the air.<span style="mso-spacerun: yes;">
</span>I went for a walk on the ship a little earlier than usual and walked six
and half times around (the extra half was so I could get closer to the entrance
that brings me to the elevator leading to a cafe).<span style="mso-spacerun: yes;"> </span>It was raining but not pouring and it didn’t
really matter as I have a hood on my sweatshirt (otherwise known as Richard’s
sweatshirt since I didn’t bring one.)<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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I went to get a caramel latte for Richard and a decaf mocha
for me after my walk.<span style="mso-spacerun: yes;"> </span>Starbucks hasn’t
quite infiltrated the ship but there is a café that makes espresso drinks so
this is not the trip to break that habit of ours.<span style="mso-spacerun: yes;"> </span>On my way back to the room, a woman got into
the elevator and said what a miserable day it was. Oh no! <span style="mso-spacerun: yes;"> </span>What a shame! <span style="mso-spacerun: yes;"> </span>I asked what had happened (I am thinking
something terrible happened to her this morning: getting bad news, falling,
something). <span style="mso-spacerun: yes;"> </span>“It’s raining.”<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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Ahh.<span style="mso-spacerun: yes;"> </span>I mumbled
something about it not coming down too hard as I exited the elevator.<span style="mso-spacerun: yes;"> </span>Apparently, I wasn’t the only one who woke up
a little cranky.<span style="mso-spacerun: yes;"> </span>Maybe it was something
in the air.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2QGArJcK9ta4CYlpOyFMVgU2_6HjuOS72m5pfEMaBUDhG6h_6iQUtsId39OPOPiuruReloH5Gv9u5HcuOCv3Cj-QhDu5FCprZVel5nnE1KYf4BpDE0ezH2TZ698rOkpbMNbrdDr_m3pZ3/s1600/IMG_9687.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2QGArJcK9ta4CYlpOyFMVgU2_6HjuOS72m5pfEMaBUDhG6h_6iQUtsId39OPOPiuruReloH5Gv9u5HcuOCv3Cj-QhDu5FCprZVel5nnE1KYf4BpDE0ezH2TZ698rOkpbMNbrdDr_m3pZ3/s320/IMG_9687.JPG" width="240" /></a>Richard and I got ready for the day – I showered; he wrapped
his leg and then we went to the regular ship restaurant for breakfast.<span style="mso-spacerun: yes;"> </span>We had been frequenting the buffet every day
but wanted to try something a little different.<span style="mso-spacerun: yes;">
</span>We enjoyed a nice breakfast and then made our way to the spa for our hot
stone massages. (We treated ourselves and I am loving this spa!)<span style="mso-spacerun: yes;"> </span>We should be entering Glacier Bay just about
when we are done with the massages.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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The Universe is looking out for me because my massage
therapist used to be a physical therapist who worked with stroke victims.<span style="mso-spacerun: yes;"> </span>We talked about my stroke and she gave me
hope that my numbness would actually go away (yes, I still have numbness).<span style="mso-spacerun: yes;"> </span>She said in her experience it takes six
months to a year to go away.<span style="mso-spacerun: yes;"> </span>That is
similar to what my neurologist had said (“weeks to a year to never”) so it was
nice to have that validated again. <o:p></o:p></div>
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Of course, she tried to sell me some products after the
session but they all do that and I politely declined.<span style="mso-spacerun: yes;"> </span>She did talk me into getting another massage
later in the week but I’m not sure if I will keep the appointment.<span style="mso-spacerun: yes;"> </span>On the one hand, I would love to splurge and
treat myself (I get massages at home but never twice in one week!) but it is
costly and would be oh so indulgent! <span style="mso-spacerun: yes;"> </span>We’ll see.<span style="mso-spacerun: yes;">
</span><o:p></o:p></div>
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We spent the day in Glacier Bay and were able to see all
kinds of wildlife. We saw a brown bear on the shore, sea otters, sea lions and
even a splash which was an indication of the possibility of a whale.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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We had our second anniversary dinner at the dining room. <span style="mso-spacerun: yes;"> </span>This is supposed to be our 20<sup>th</sup>
Anniversary cruise but we actually celebrate 21 years next week (we couldn’t
come last year). <span style="mso-spacerun: yes;"> </span>We even got Happy
Anniversary balloons on our room door, a glass of champagne at the dinner and a
special tiramisu cake.<span style="mso-spacerun: yes;"> </span>All the servers
even came over and sang a happy anniversary song to us (I only know this
because I recognized the word “amore”) and the table next to us raised their
glasses to toast us!<span style="mso-spacerun: yes;"> </span>It was very
special.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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<b style="mso-bidi-font-weight: normal;">Day 7 (Wednesday)</b>.<span style="mso-spacerun: yes;"> </span>Today we docked in Sitka! <span style="mso-spacerun: yes;"> </span>I slept seven and a half hours and woke up on
my own just before 5:00 a.m.<span style="mso-spacerun: yes;"> </span>Richard’s
alarm went off again at 5:00 – he said he silenced it so we’re not sure what is
going on.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
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Richard slept okay.<span style="mso-spacerun: yes;"> </span>He
was up a couple of times but not in excruciating pain.<span style="mso-spacerun: yes;"> </span>Today will be a day in town so there will be
more walking again.<span style="mso-spacerun: yes;"> </span>He plans to bring
his scooter to help alleviate some pressure on his leg.<span style="mso-spacerun: yes;"> </span>I hope that helps. <o:p></o:p></div>
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Sitka was a spectacular day!<span style="mso-spacerun: yes;">
</span>Apparently, it rains most of the year yet our day was sunny and 65
degrees.<span style="mso-spacerun: yes;"> </span>It was fabulous!<span style="mso-spacerun: yes;"> </span>It is such a beautiful area, too. We hadn’t
pre-purchased any excursions but bought one once we were in town.<span style="mso-spacerun: yes;"> </span>Before heading out for the tours, we walked
around the town and visited the local shops and found a place for a mocha and
cappuccino. They had frozen yogurt but it was too early for that.<span style="mso-spacerun: yes;"> </span>I miss our FroYo runs with Rachel!<span style="mso-spacerun: yes;"> </span>I hope our little local shop hasn’t gone out
of business since we’ve been gone – we give them a LOT of business.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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Our tours were a trip to the <a href="http://www.fortressofthebear.org/">Fortress of the Bear</a> and the <a href="https://alaskaraptor.org/">Raptor Center</a> and driven by a very nice
(and funny) man named Lionel.<span style="mso-spacerun: yes;"> </span>We saw
more bears but these were in a rescue center that takes care of bear cubs after
their moms were killed.<span style="mso-spacerun: yes;"> </span>The Raptor
Center showed us more bald eagles than I will ever see again!<span style="mso-spacerun: yes;"> </span>Beautiful creatures.<span style="mso-spacerun: yes;"> </span>This center also rescues injured or starving
birds and releases them back into the wild once they’re fixed and in good
shape.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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We lunched on fantastic chowder before heading back to the
boat.<span style="mso-spacerun: yes;"> </span>Richard was hurting and very tired
so we stayed in the room for the night.<span style="mso-spacerun: yes;">
</span>He suggested room service which was a good idea.<span style="mso-spacerun: yes;"> </span>I really was so full I didn’t think I would
eat but we had a light meal from the Japanese restaurant on the ship.<span style="mso-spacerun: yes;"> </span>Richard had to order dessert (he had to!) but
I could only choke down a bite!<span style="mso-spacerun: yes;"> </span>I am not
usually too full for dessert so that’s saying something! <o:p></o:p></div>
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While sitting on the deck of our room when the ship pushed
off from Sitka we were fortunate to see sea lions and even a whale!<span style="mso-spacerun: yes;"> </span>I couldn’t get a picture fast enough before
the tail disappeared into the sea but, oh my!<span style="mso-spacerun: yes;">
</span><o:p></o:p></div>
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We went to sleep around 10:00.<o:p></o:p></div>
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<b style="mso-bidi-font-weight: normal;">Day 8 (Thursday)</b>.<span style="mso-spacerun: yes;"> </span>I woke up around 5:30 and Richard was asleep,
sitting on the couch.<span style="mso-spacerun: yes;"> </span>His leg must have
been hurting through the night.<span style="mso-spacerun: yes;"> </span>I dreamt
about Taz – more of a reality dream than anything.<span style="mso-spacerun: yes;"> </span>I was making dinner, dished up a plate and
left it on the counter, walked into the next room and glanced over to see him
with paws on the counter eating off the plate.<span style="mso-spacerun: yes;">
</span>Yep, that’s my boy! <o:p></o:p></div>
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We do miss our dogs!! <o:p></o:p></div>
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I went for my daily two mile walk around the ship and
watched as we docked at our next port, Ketchikan.<span style="mso-spacerun: yes;"> </span>I tried to get a mocha but the café wasn’t
open yet. <span style="mso-spacerun: yes;"> </span>I returned to the room,
showered and we got ready to disembark.<span style="mso-spacerun: yes;">
</span>It will just be a short time in town before the ship heads out again
toward Victoria.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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We had coffee and bagels at a local shop and then walked
around the town before our tour.<span style="mso-spacerun: yes;"> </span>We made
our way to the Visitor’s Center so we could check in for the tour.<span style="mso-spacerun: yes;"> </span>We were super early so Richard sat to rest
his leg and I walked around the shops a bit more.<span style="mso-spacerun: yes;"> </span>The tour included watching a gentleman work
on carving a new totem pole and he gave a talk about how he carves them and
makes his own tools.<span style="mso-spacerun: yes;"> </span>He was an
interesting character and a seemingly gentle soul - very kind.<span style="mso-spacerun: yes;"> </span>Richard and I talked to him after the
presentation and we learned more about him.<span style="mso-spacerun: yes;">
</span>Justin has had three strokes (two small and one more devastating).<span style="mso-spacerun: yes;"> </span>He couldn’t walk but now has regained his
mobility and can still carve.<span style="mso-spacerun: yes;"> </span>He said
the medical care in Ketchikan was terrible but he finally got a referral to a
doctor in Seattle.<span style="mso-spacerun: yes;"> </span>He said he has a
couple of tumors in his brain and his sinuses and he doesn’t know what all will
happen.<span style="mso-spacerun: yes;"> </span>He said the stroke changed him
and he talked lovingly about his family. We told him how much we enjoyed
visiting with him and left to finish our tour.<span style="mso-spacerun: yes;">
</span>I left even more grateful to live in an area that has good
healthcare.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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Our next stop: salmon!<span style="mso-spacerun: yes;">
</span>We saw salmon swimming upstream in a beautiful stream surrounded by
woods (and a bunch of ship people, but that’s okay). <o:p></o:p></div>
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Our next stop was another stream under a bridge where we
hoped to see a bear.<span style="mso-spacerun: yes;"> </span>Lucky for us, there
actually was a black bear looking for fish.<span style="mso-spacerun: yes;">
</span>He caught a salmon and we watched him lay on the grass eating his lunch
then wander back into the woods, oblivious to the throng of people watching
him.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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A local resident lived next to the stream and, apparently,
had a deal with certain tour companies allowing them on to the property for a
fee.<span style="mso-spacerun: yes;"> </span>Good entrepreneurship! <o:p></o:p></div>
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Our last stop on the tour was a totem pole area which was
interesting and rich in history.<span style="mso-spacerun: yes;"> </span>Apparently,
Abe Lincoln’s Secretary of State owes these people a huge debt and they have
not forgotten that!<span style="mso-spacerun: yes;"> </span>It has been great
learning so much about Alaska!<span style="mso-spacerun: yes;"> </span>Not to
show too much of my ignorance but I didn’t realize there were rain forests in
Alaska. <o:p></o:p></div>
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Richard was thrilled to see a fishing boat that is featured
on one of the Alaska reality shows he watches (“Time Bandit”). I took photos of
him near the boat since we didn’t choose that tour – that will have to be good
enough!<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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We were back to the ship around 12:30 – just before the
deadline! <span style="mso-spacerun: yes;"> </span>The line was long to board so I
left Richard and ran back to one of the stores to get some candy Richard had
wanted.<span style="mso-spacerun: yes;"> </span>Luckily, I didn’t miss the
deadline to be back on the boat or those would have been some costly sour gummy
worms! <o:p></o:p></div>
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Today Richard is going to play bingo while I get another
massage.<span style="mso-spacerun: yes;"> </span>I do feel very indulgent but I
have to stock up and refill my caregiver bucket!<span style="mso-spacerun: yes;"> </span>Plus, I’m hoping he wins at bingo so I won’t
feel so bad spending the money.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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I keep thinking about Justin, the carver.<span style="mso-spacerun: yes;"> </span>Talking to someone local who had a stroke
made me realize (more than I had already) just how lucky we are to have access
to good healthcare.<span style="mso-spacerun: yes;"> </span>The small towns
we’ve been in do not have great accessibility for people in wheelchairs; many
homes have steep stairs leading into their homes.<span style="mso-spacerun: yes;"> </span>What happens after surgery for them?<span style="mso-spacerun: yes;"> </span>What about anyone with mobility issues?<span style="mso-spacerun: yes;"> </span>To think people have to travel to Seattle for
specialty healthcare is quite unnerving.<span style="mso-spacerun: yes;">
</span>Not everyone would be able to do that. <o:p></o:p></div>
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<b style="mso-bidi-font-weight: normal;">Day 9 (Friday)</b>.<span style="mso-spacerun: yes;"> </span>Victoria was our Canadian stop and we only
have a few short evening hours.<span style="mso-spacerun: yes;"> </span>Before
leaving on our trip, I found a cute restaurant near the pier and thought we
could have yet another anniversary dinner!<span style="mso-spacerun: yes;">
</span>The ship docked late due to some high winds so I was worried we wouldn’t
make it in time for our reservation but it worked out fine.<span style="mso-spacerun: yes;"> </span>The dinner (and, of course, desserts!) were
fabulous at <a href="https://www.ilcovotrattoria.ca/">Il Covo Trattoria</a>. I was
determined to wear heels for this dinner so got a little dressed up and donned
a pair of boots.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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We wanted to walk around downtown Victoria after dinner and
were told it was “just around the corner.”<span style="mso-spacerun: yes;">
</span>Suure.<span style="mso-spacerun: yes;"> </span>Two miles later, we
finally saw it in the distance!<span style="mso-spacerun: yes;"> </span>I left
Richard on a bench and walked up a hill to visit some touristy shops and got a
bargain on some sweatshirts.<span style="mso-spacerun: yes;"> </span>After
finding Richard again (I made sure to make note of some landmarks since I am
notorious for getting lost) we unanimously voted to take a taxi back to the
boat.<span style="mso-spacerun: yes;"> </span>Between his painful leg, sore back
and my feet (the heels are cute but not made to walk two miles) we were ready
to head back to the ship.<span style="mso-spacerun: yes;"> </span>Victoria might
be better seen in the daytime with more hours to spend and maybe some sensible
shoes.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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The ship will dock in Seattle by the time we wake up in the
morning.<span style="mso-spacerun: yes;"> </span>It is hard to believe this is
our last day but we are both ready to get back home and see the dogs, Carol and
Robert (not necessarily in that order, in case Carol or Robert asks).<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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I cannot even find the words to say how much Richard and I
enjoyed this trip (although I found plenty of words for this post and am sure
my joy is evident).<span style="mso-spacerun: yes;"> </span>I am so grateful to
everyone who helped make this happen (Robert’s medical care team, Courtyard
Health Care Center, Rach, Matt, Rich, Carol, Joelle and Richard’s
brothers).<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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We are so, so appreciative and, maybe, just a little greedy
because I would love to do something like this again next year.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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Something for me to remember:<span style="mso-spacerun: yes;"> </span>Respite isn’t just good for the caregiver but
also for our loved one.<span style="mso-spacerun: yes;"> </span>It was a relief
to know that Robert had a great time at the facility and was well-cared for and
I will share more about that in another post.<span style="mso-spacerun: yes;">
</span><o:p></o:p></div>
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In the meantime, I am going to do my best to not let this
after-respite glow disappear any time soon. <o:p></o:p></div>
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<div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com0tag:blogger.com,1999:blog-3821611713908924761.post-82647501699370513312018-09-03T20:45:00.000-07:002018-09-03T20:45:49.229-07:00Respite: Just What the Doctor Ordered<br />
<div class="MsoNormal">
It took until the day I dropped Robert off at the facility
to really believe Respite was happening!
Getting respite shouldn’t be as difficult as it is but that’s a whole
other post for another day.</div>
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<o:p></o:p></div>
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I want to share snippets of our days so that if you can’t
get respite care (which many people cannot) then you can at least enjoy the
experience with us. <span style="mso-spacerun: yes;"> </span>I’ll do this in a
few posts or else your eyes will glaze over and it will be like the old days
where families would show their endless slideshows of vacation photos.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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<br /><i>
Maybe that was just my family . . . <o:p></o:p></i></div>
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<b style="mso-bidi-font-weight: normal;">Day 1 (Thursday)</b>.<span style="mso-spacerun: yes;"> </span>I dropped Robert off at facility and when I
say “dropped him off” I mean it took four and half hours!<span style="mso-spacerun: yes;"> </span>I checked him in to a facility located in a
town 20 minutes away, unloaded Robert, his pillows, suitcases full of clothes
and pjs, a bag of briefs, a walker, his puzzle books, toiletries, bible,
calendar and lap tray then had to run home to get his medications (after having
asked this very question and being told I did not need to bring his meds) but I
was not going to complain!<span style="mso-spacerun: yes;"> </span>As long as he
gets good care and actually gets his medications, I will be happy.<span style="mso-spacerun: yes;"> </span>They started him on lunch while I ran home
and he was still eating it when I returned an hour later. It was quite a lunch,
too!<span style="mso-spacerun: yes;"> </span>He is going to be one happy
camper.<span style="mso-spacerun: yes;"> </span>I had conferences with the charge
nurse, floor nurse and admissions director and posted the “About Robert”
document that I create when I leave him somewhere.<span style="mso-spacerun: yes;"> </span>I helped Robert with his lunch, unpacked his
belongings then raced home.<span style="mso-spacerun: yes;"> </span>Richard and
I picked up Carol so she could stay with the dogs while we were away and we
went out to dinner with her, Rach and Matt.<span style="mso-spacerun: yes;">
</span>They gave us binoculars for our trip!<span style="mso-spacerun: yes;">
</span>I started packing for me at 9:00 p.m.<span style="mso-spacerun: yes;"> </span></div>
<br />
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<b style="mso-bidi-font-weight: normal;">Day 2 (Friday)</b>.<span style="mso-spacerun: yes;"> </span>We’re flying to Seattle today!<span style="mso-spacerun: yes;"> </span>I woke up at 4:00 a.m.; Richard was up at
3:00 a.m. Rach picked us up at 6:00 and we loaded her car with all of our
suitcases, carry-on bags and Richard’s knee scooter (it will, hopefully, help
ease his leg pain during the trip).<span style="mso-spacerun: yes;"> </span>Dogs
are so sad we are leaving with suitcases!<span style="mso-spacerun: yes;">
</span>Off to the airport, we check in and relax until our 8:00 a.m.
flight.<span style="mso-spacerun: yes;"> </span>The flight is delayed 45 minutes
which just gives us more time for relaxation, a decaf mocha and yogurt.<span style="mso-spacerun: yes;"> </span>We’re on vacation!!<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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After a short flight, we are in Seattle!<span style="mso-spacerun: yes;"> </span>We check in at the hotel and the room is
ready (super early!), we are randomly upgraded to a room with a balcony and overlooking the
bay.<span style="mso-spacerun: yes;"> </span>Loving this vacation! <o:p></o:p></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXMvnwhI3G68ZO9NyWSJJu1YVX1aYYWpZVIWxM422z7YaokpnHgroBSKgnatNCTuBAazeeXZeAhH4sWX5Ij2KWxuIctuc0GJ1mov1Fx-yPakR8QRn4tJGHTOTqc1l04Qzl6L61xMTdKGSX/s1600/IMG_9658.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXMvnwhI3G68ZO9NyWSJJu1YVX1aYYWpZVIWxM422z7YaokpnHgroBSKgnatNCTuBAazeeXZeAhH4sWX5Ij2KWxuIctuc0GJ1mov1Fx-yPakR8QRn4tJGHTOTqc1l04Qzl6L61xMTdKGSX/s320/IMG_9658.JPG" width="240" /></a>I call the facility to check on Robert and they report he is
doing well and will have an activities person help him with activities. Apparently,
they have bingo which Robert loves! <span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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The weather is cool but warm in the sun. I’m so excited to
wear sweaters and boots on this trip after coming from the hot Sacramento summer!<span style="mso-spacerun: yes;"> </span>Richard
rewraps his leg and, after resting a bit, we go to Pikes Market to see the first
Starbucks (you knew we would!) and walk around.<span style="mso-spacerun: yes;">
</span>We lunched at a café claiming to have the “best salmon burger” and it
was pretty darn good.<span style="mso-spacerun: yes;"> </span>We walked back toward the hotel and sat by the bay in a park.<span style="mso-spacerun: yes;"> </span>We had the perfect spot to watch a street
magician do a card trick with a couple of other tourists then get mad at them
because they didn’t tip him enough.<span style="mso-spacerun: yes;"> </span>He
stormed off and did the same thing to another group of tourists!<span style="mso-spacerun: yes;"> </span>Not sure he is going to get any repeat
business behaving that way.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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We go back to the hotel and Richard is hurting!<span style="mso-spacerun: yes;"> </span>I’m getting pretty tired, took but we go out
to dinner at the hotel restaurant.<span style="mso-spacerun: yes;"> </span>Back
to the room and relax.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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We called Carol to check on the dogs and she said they’re
doing great.<span style="mso-spacerun: yes;"> </span>Talked to Rach and she said
everyone is doing well after “checking the mail.” <span style="mso-spacerun: yes;"> </span>She’s checking our mail every day and simultaneously checking
in with grandma to be sure she doesn’t need anything.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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I fall asleep super early!<span style="mso-spacerun: yes;">
</span><o:p></o:p></div>
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Richard has a rough night.<span style="mso-spacerun: yes;">
</span>I wake up a few times to him moving around in room.<span style="mso-spacerun: yes;"> </span>He goes downstairs to the hotel lobby and is
the first person ever to close down a bar without ordering one drink.<o:p></o:p></div>
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<b style="mso-bidi-font-weight: normal;">Day 3 (Saturday)</b>.<span style="mso-spacerun: yes;"> </span>I wake up at 6:30 after nine and a half hours
of sleep!!.<span style="mso-spacerun: yes;"> </span>Glorious – no alarms!<span style="mso-spacerun: yes;"> </span>Richard is finally asleep so I stay in bed so
I don’t wake him.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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He gets up around 7:30 and I walk to a nearby Starbucks.<span style="mso-spacerun: yes;"> </span>This definitely counts as my exercise -- the streets
are as hilly as San Francisco!<span style="mso-spacerun: yes;"> </span>We sign
up for the shuttle to the pier and enjoy the cool, misty Seattle air from the balcony.<span style="mso-spacerun: yes;"> </span>It’s almost time to leave for the
cruise!<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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We get to the cruise ship and check in.<span style="mso-spacerun: yes;"> </span>It wasn’t super crowded but we were able to
skip the line to check in at the “wheelchair and other assistance needed” desk.
One of the staff had seen Richard limping and took one look at his bandaged leg
and pointed us to that desk.<span style="mso-spacerun: yes;"> </span>The staff
was very helpful!<span style="mso-spacerun: yes;"> </span>We could have rented a
motorized scooter for the week but Richard decided against it.<span style="mso-spacerun: yes;"> </span>We’ll see by the end of the week if that was
the right decision. <span style="mso-spacerun: yes;"> </span>His knee scooter has
been slightly helpful but it does hurt his back and knee after using it.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We find our room and are overwhelmed by the spacious room
and the balcony!<span style="mso-spacerun: yes;"> </span>We will definitely not
go to a smaller room after this experience!<span style="mso-spacerun: yes;">
</span>Richard was able to put his leg up for a bit and let it air dry.<span style="mso-spacerun: yes;"> </span>He rewrapped it just in time for the
emergency drill.<span style="mso-spacerun: yes;"> </span>Our suitcases arrived
and I started to unpack while he cleaned his wound.<span style="mso-spacerun: yes;"> </span>I wonder if Richard will notice my six pairs
of boots and five pairs of sandals in the closet.<span style="mso-spacerun: yes;"> </span>I spread them out between two closets so it
doesn’t seem too overwhelming. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We left for the emergency drill, me with the life jackets in
hand.<span style="mso-spacerun: yes;"> </span>A couple down the hall spotted us
with the life jackets and started back to their room to get theirs when the
captain came over the intercom instructing passengers NOT to bring life jackets
to the drill. We all busted out laughing. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Some safety officer I am! Richard headed to the elevator
while I scurried back to the room to drop off the life jackets. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Next up was the Sail Away party – we watched the ropes get
unhooked from the dock and off we went!<span style="mso-spacerun: yes;">
</span>Richard got his french fries he’s been dying for days to get and we
found a table with a nice view of the water.<span style="mso-spacerun: yes;">
</span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The spa raffle was next but, sadly, we didn’t win.<span style="mso-spacerun: yes;"> </span>Richard signed up for a traditional shave
while I debated about scheduling a massage.<span style="mso-spacerun: yes;">
</span>The gym looks good but there’s a walk around path on the 3<sup>rd</sup>
deck and three times around will get me to a mile.<span style="mso-spacerun: yes;"> </span>I think I’ll try that in the morning.<span style="mso-spacerun: yes;"> </span>There’s a lot of walking on the ship but, with
Richard’s leg, there’s elevator time too.<span style="mso-spacerun: yes;">
</span>I need to make sure I keep up with the exercising.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After not winning the spa raffle we found the buffet and drowned our sorrows. No, we didn’t do too bad: we each had a salad, Richard had a bit of pasta and then we
couldn’t pass up dessert.<span style="mso-spacerun: yes;"> </span>Chocolate
brownie cheesecake for Richard and apple pie for me.<span style="mso-spacerun: yes;"> </span>Hoping for ice cream later. (Hey, I’m going
to be walking!)<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Richard was pretty pooped from such an awful night sleeping
last night so we returned to the room.<span style="mso-spacerun: yes;">
</span>We broke out the binoculars and looked out at the sea.<span style="mso-spacerun: yes;"> </span>I was hoping to spot a whale or other marine
mammal but only saw a fishing boat and a few birds.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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<div class="MsoNormal">
We finished unpacking and polished off the chocolate
strawberries Richard ordered for our room (and which were waiting for us when
we first arrived).<span style="mso-spacerun: yes;"> </span>Richard debated about
leaving his leg wrapped all night but I reminded him that the doctor wanted it
unwrapped when possible.<span style="mso-spacerun: yes;"> </span>Richard was
worried about leaking on the bed but we brought plastic garbage bags we can use
and I had a few plastic bags from the dry cleaners hanging on some of my
blouses.<span style="mso-spacerun: yes;"> </span>He can use those too.<span style="mso-spacerun: yes;"> </span>He has to do what is best for his leg. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I didn’t call the facility about Robert so was slightly
concerned.<span style="mso-spacerun: yes;"> </span>I worry that he was alone in
his room but then I remember that he loves his word search and television and I
am sure he would be happy doing those even if he was left alone.<span style="mso-spacerun: yes;"> </span>I had to tell myself that if something
happened they would call Rich as I instructed them.<span style="mso-spacerun: yes;"> </span>I debated about buying the internet package
on the ship so I would be able to at least text but decided against it after
talking to Richard about it.<span style="mso-spacerun: yes;"> </span>Rach will
be able to handle anything that happens with grandma or the dogs and Rich can
handle any issues with Robert.<span style="mso-spacerun: yes;"> </span>We’ll be
at sea tomorrow but will be off ship on Monday.<span style="mso-spacerun: yes;">
</span>I’m sure we can find a little café with free wifi in Juneau.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It has been a slow process of being able to relax.<span style="mso-spacerun: yes;"> </span>The “on” switch peels off in layers and I can
start to feel a little relaxed then go back to “on” again.<span style="mso-spacerun: yes;"> </span>More relaxed, then back on.<span style="mso-spacerun: yes;"> </span>The “on” switch is slowly turning off,
though.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Richard and I realized we haven’t ever cruised with just the
two of us!<span style="mso-spacerun: yes;"> </span>I know Richard feels bad
about his leg and his back pain and feels he’s slowing us down but just being
on the cruise – even just in the room – is relaxing. We’re together; even
holding hands and enjoying each other’s company. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Day 4 (Sunday)</b>.<span style="mso-spacerun: yes;"> </span>I was so tired last night that I fell asleep
at 8:00 p.m.<span style="mso-spacerun: yes;"> </span>Woke up at 7:30 a.m. – yes,
that’s eleven and a half hours of sleep!<span style="mso-spacerun: yes;">
</span>Apparently, I am catching up on years of lack of sleep.<span style="mso-spacerun: yes;"> </span>Richard isn’t so lucky: his leg has been
killing him (way too much walking) so he is up half the night in excruciating
pain.<span style="mso-spacerun: yes;"> </span>I only half wake up when he’s
moving about but I know he worries he keeps me up.<span style="mso-spacerun: yes;"> </span>Doesn’t matter if I’m sleeping for 11.5
hours! <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We were at sea all day today and it was rough!<span style="mso-spacerun: yes;"> </span>Richard and I went to a bingo game and some
poor kid lost his lunch during the game.<span style="mso-spacerun: yes;">
</span>People were lined up to get seasickness patches and I finally wore the
seasick bracelet Richard brought along.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Richard and I went to an anniversary dinner and were let in
even though we broke dress code.<span style="mso-spacerun: yes;"> </span>Well, Richard
did; I dressed up.<span style="mso-spacerun: yes;"> </span>Richard can’t
comfortably wear pants so wore a button down shirt with his cargo shorts. There
were some discreet discussions amongst the staff but they let us in and we
thanked them profusely.<span style="mso-spacerun: yes;"> </span>We explained
about his leg (which was obvious because he had it wrapped up and was using his
knee scooter). They were super kind and understanding.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We had a delicious meal (way too much food though!).<span style="mso-spacerun: yes;"> </span>Good thing I’m walking the ship in the
morning!<span style="mso-spacerun: yes;"> </span>I go around six times which makes
a two mile walk but I might have to increase that with as much as I have been
eating!<span style="mso-spacerun: yes;"> </span>No music needed – listening to
the ocean waves is all the motivation I need! <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
All that good food made me tired again so it was early to
bed.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I broke down and bought the ship internet package.<span style="mso-spacerun: yes;"> </span>Richard needs to rest his leg and I need
something to do while he’s sleeping.<span style="mso-spacerun: yes;">
</span>Internet it is! <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Day 5 (Monday)</b>.<span style="mso-spacerun: yes;"> </span>Again, I slept eleven and a half hours.<span style="mso-spacerun: yes;"> </span>I hope I can go back to sleeping six and a
half hours . . .<span style="mso-spacerun: yes;"> </span>I’ve been dreaming all
night, too, so must be getting a fairly deep sleep.<span style="mso-spacerun: yes;"> </span>Richard had his worst night yet,
unfortunately.<span style="mso-spacerun: yes;"> </span>Poor guy.<span style="mso-spacerun: yes;"> </span>His leg wound is just so unforgiving.<span style="mso-spacerun: yes;"> </span>The doctor decided he will need a fourth skin
graft so we will get that done soon after we return home.<span style="mso-spacerun: yes;"> </span>We hope that completely takes and resolves this
awful wound and leg pain.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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<div class="MsoNormal">
Today we were making our way to Juneau and were a lot closer
to land which meant the sea was so much calmer.<span style="mso-spacerun: yes;">
</span>Thank goodness!<span style="mso-spacerun: yes;"> </span>Richard and I
went to a group class watching on the deck for sea life and we saw a couple of
whales!<span style="mso-spacerun: yes;"> </span>I caught just glimpses of them
but that’s what they were!<span style="mso-spacerun: yes;"> </span>Thankfully,
we had the binoculars!<span style="mso-spacerun: yes;"> </span>We ate breakfast
and went back to the room.<span style="mso-spacerun: yes;"> </span>Richard had
to tend to his leg so I went back out to do my walk around the ship.<span style="mso-spacerun: yes;"> </span>While walking, I saw several pieces of
glacier just floating by.<span style="mso-spacerun: yes;"> </span>Whales and
glaciers and we’re early in the trip!<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Before leaving the ship, I got a voicemail from Robert’s
facility. The message said it wasn’t an emergency but they needed to talk to
me.<span style="mso-spacerun: yes;"> </span>The plan had been for Rich to take
care of anything related to Robert so I texted Rich to ask him to call to see
what the issue was. He immediately responded and said he would call right away.<span style="mso-spacerun: yes;"> </span>Turns out, Robert fell when trying to
transfer from the toilet to the wheelchair.<span style="mso-spacerun: yes;">
</span>He had been given a call button but was being impatient and decided to
do it himself. He fell but was okay (probably bruised, though).<span style="mso-spacerun: yes;"> </span>They told Rich they would change the
protocols for Robert and have someone stay with him until he was done in the
restroom.<span style="mso-spacerun: yes;"> </span>Rich reported all this to me
in a text and I was thrilled it was handled swiftly and all was well.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Happy I could let go and let Rich handle it and so grateful
to Rich. Grateful Robert wasn’t hurt and that the facility was
reacting appropriately. Such a relief! <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We were docked in Juneau from 12:00 – 10:30 p.m. but Richard
and I only stayed off the ship for a few hours.<span style="mso-spacerun: yes;">
</span>He was pretty sore from all the walking but we did all we wanted to do
anyway.<span style="mso-spacerun: yes;"> </span>We spent the rest of the
afternoon/evening watching the sea and the city from the observation deck,
sipping a decaf mocha. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We kept our eyes on a couple of bald eagles in town and were
just amazed by their majesty.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We ate dinner (not sure why – I am SO stuffed) and then came
back to the room to watch the city (and our bald eagles) from our balcony.<span style="mso-spacerun: yes;"> </span>We couldn’t have asked for better weather! <span style="mso-spacerun: yes;"> </span>It was misty with a little rain but not too
cold.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Such a fabulous trip and it’s only Monday! <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Part Two coming up . . . <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<br /><div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com0tag:blogger.com,1999:blog-3821611713908924761.post-9662116673227681032018-07-29T11:29:00.000-07:002018-07-29T11:29:37.281-07:00Video EEG: Process, Results and Decisions<br />
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif; font-size: 12pt;">A
lot has happened since Robert’s </span><a href="https://www.epilepsy.com/learn/diagnosis/eeg/video-eeg" style="font-family: "Times New Roman", serif; font-size: 12pt;">video EEG</a><span style="font-family: "Times New Roman", serif; font-size: 12pt;"> in
April and it all affects the direction we go with Robert’s treatment.</span><span style="font-family: "Times New Roman", serif; font-size: 12pt;"> </span><span style="font-family: "Times New Roman", serif; font-size: 12pt;">Caregivers make decisions every day about
treatment and everything needs to be considered: how treatment will affect our
loved one and their quality of life, the ability of the caregiver to manage the
treatment and, of course, what our loved one wants or what we think he would
want if he is not able to make his own decision.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">A
great deal of stress in caregiving comes from having to make these decisions
about treatment and wondering if the decision is the right one to make for
everyone involved.<span style="mso-spacerun: yes;"> </span>These are not just
decisions about what to eat for dinner or what to wear for the day (although,
those add up too) but life and death, quality of life type decisions.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">There
are other stressors while caregiving such as financial, time management, sleep
deprivation (to name just a few) but making a decision for someone else’s
treatment is a big one.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">We
are making life and death, quality of life decisions all the time.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Robert’s
treatment has changed through the years but, since I took over his care ten
years ago, it has only involved medication changes.<span style="mso-spacerun: yes;"> </span>Those can be a bear!<span style="mso-spacerun: yes;"> </span>Robert is on five different medications for
seizure control and an additional ten for various other reasons (thyroid,
Parkinsonism, GERD, allergies).<span style="mso-spacerun: yes;"> </span>He is
incredibly sensitive to medication changes so I am usually reluctant to try
something new but if we do try something, we take it slow.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
give the new medication some time to work but also to see if the side-effects
subside or are something we can live with.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">And
there are always side-effects. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Last
summer Robert got a new neurologist.<span style="mso-spacerun: yes;"> </span>She
came from the UCLA Medical Center and is energetic, personable and had the goal
of getting her patients to zero seizures.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Zero
seizures?<span style="mso-spacerun: yes;"> </span>It never occurred to me that
Robert could have zero seizures after having a lifetime of dozens a month.<span style="mso-spacerun: yes;"> </span>After she recommended trying one new
medication we dropped it as it seemed to be causing an increase in seizures!<span style="mso-spacerun: yes;"> </span>(*insert buzzer sound here*)<span style="mso-spacerun: yes;"> </span>Rejected!<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">That
didn’t hinder Dr. K’s enthusiasm for finding a solution for Robert.<span style="mso-spacerun: yes;"> </span>She told me how experienced she was with the <a href="http://www.neuropace.com/neuropace-launches-next-generation-rns-system/">NeuroPace</a>
and had high hopes that it could greatly reduce Robert’s seizures and even,
eventually, allow us to reduce some of his seizure medications.<span style="mso-spacerun: yes;"> </span>It sounded very promising so we decided to
explore that option.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">The
first step was the Video EEG. <span style="mso-spacerun: yes;"> </span>After <a href="http://www.robertssister.com/2018/04/juggling-teamwork-and-little-hope.html">getting
the team together</a> (because a VEEG requires a team) we were on our way!<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman", serif; font-size: 12pt;">I
didn’t really know what to expect from the VEEG but did some research and
prepared the best way I know: create to-do lists and a schedule!</span><span style="font-family: "Times New Roman", serif; font-size: 12pt;"> </span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">The
VEEG usually lasts from Monday through Friday and requires 24 hour monitoring
by a family member.<span style="mso-spacerun: yes;"> </span>Robert gets hooked
up to the EEG monitor and is on a video monitor but the caregivers are expected
to press a button to flag when a seizure occurs.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">It
is a huge commitment but we all knew how important it was to do this in order
to give Robert a chance at fewer seizures.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
explained what I knew about the process to Robert and told him Richard
(brother-in-law), Rich (Other Brother) or I would be with him the whole
time.<span style="mso-spacerun: yes;"> </span>He’s usually a pretty good sport (unless
he is on a new med) so he was game for the VEEG.<span style="mso-spacerun: yes;"> </span>All he needs to be happy is his word search
book, some television shows and good food.<span style="mso-spacerun: yes;">
</span>I brought Robert’s word search, knew he would have a television and
since Robert is a fan of hospital food we were all set. <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Richard
and I took Robert in on Monday and the leads were meticulously applied to
Robert’s scalp.<span style="mso-spacerun: yes;"> </span>I think they pretty much
covered every inch of his head!<span style="mso-spacerun: yes;"> </span>The
smell of the glue they used was horrific but that dissipated after a while (or
we just got used to it).<span style="mso-spacerun: yes;"> </span>The tech was
extremely patient and kind during the process and answered all the questions we
had about the process.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">She
explained the leads would stay on for a full five days and they could be
reapplied if any come off during the week.<span style="mso-spacerun: yes;">
</span>She hooked up a respiratory belt, EKG leads, pulse meter and a nasal cannula.<span style="mso-spacerun: yes;"> </span>The nasal cannula and pulse meter can be
unhooked when Robert needs to go to the restroom but the rest of it is attached
to a very long cord which Robert will carry with him to the restroom. The only
time Robert can get out of bed is when he is using the restroom.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
think this limited mobility would drive most people crazy but Robert didn’t
seem to mind.<span style="mso-spacerun: yes;"> </span>Robert enjoys (a little
too much) being waited on so this was certainly not an inconvenience to
him.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">We
met several members of the neurology team the first day and they ran a bunch of
baseline tests (blood work to check medication levels, chest x-ray, neuro
exam).<span style="mso-spacerun: yes;"> </span>It was a flurry of activity the
first day and they started lowering his seizure medications that first
evening.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">By
Tuesday morning, Richard noted some confusion when Robert woke up.<span style="mso-spacerun: yes;"> </span>Robert thought he was in the commercials and
called Richard “John.”<span style="mso-spacerun: yes;"> </span>Most likely, this
indicated a seizure while Robert had been sleeping.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
took over in the afternoon (after a work meeting and my own ultrasound) and by
evening Robert was shaky and his pulse was high. <span style="mso-spacerun: yes;"> </span>This is an indicator that seizure activity is
coming.<span style="mso-spacerun: yes;"> </span>Rich took over Tuesday night and
Robert stayed up until 11:00 working on his word search puzzle. <span style="mso-spacerun: yes;"> </span>His schedule is always out of whack when he’s
in the hospital.<span style="mso-spacerun: yes;"> </span>Rich noted a seizure at
1:15 a.m.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">By
Wednesday morning, the seizure meds had been stopped.<span style="mso-spacerun: yes;"> </span>Robert ate some of his breakfast (scrambled
eggs and biscuits & gravy) and worked on his word search puzzle.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
also got the results of my carotid artery ultrasound and everything looked
normal!<span style="mso-spacerun: yes;"> </span>Woohoo!<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Robert
gave up on eating the scrambled eggs which is unusual for him.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">By
9:20 that morning, the seizures were in full force.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">This
was his typical cluster of seizures: his head moves to the far right and each
one lasts 15 – 20 seconds.<span style="mso-spacerun: yes;"> </span>He sometimes
moves his head back and forth and gets what I call “seizure mouth” (his lips purse
together and his face droops).<span style="mso-spacerun: yes;"> </span>After
several of these he had a couple of longer seizures (about a minute each) with
moaning and moving of his right leg.<span style="mso-spacerun: yes;"> </span>He
was very disoriented.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">The
doctors gave him some of his regular seizure medications to stop/slow the
seizures but they were cautious about giving him too much.<span style="mso-spacerun: yes;"> </span>They were hoping to do a <a href="https://www.mayoclinic.org/tests-procedures/spect-scan/about/pac-20384925">SPECT
scan</a> on Thursday and they needed him to have a seizure during the
test.<span style="mso-spacerun: yes;"> </span>This test is basically a CT scan
with radioactive dye injected at the first sign of a seizure so they can
pinpoint exactly where the seizure is coming from.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ_UpMpS4CShC5MZYWcdJETuPZD4bTszii-WTwrknAjLWe54H6JTDxwT5KTnuBSw6wYHOiDPfK_Qwt2EfAeFUVgZ6vPZXMJbV9LMr7UGs4cw8hCrkcO92ygDPOO4-EgmxzLJRESqjdpbur/s1600/IMG_9037.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ_UpMpS4CShC5MZYWcdJETuPZD4bTszii-WTwrknAjLWe54H6JTDxwT5KTnuBSw6wYHOiDPfK_Qwt2EfAeFUVgZ6vPZXMJbV9LMr7UGs4cw8hCrkcO92ygDPOO4-EgmxzLJRESqjdpbur/s320/IMG_9037.JPG" width="240" /></a><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Robert
continued to have seizures every 10 minutes or so.<span style="mso-spacerun: yes;"> </span>The doctors decided to give him enough meds
to stop the seizures regardless of the effect on the test scheduled for
Thursday.<span style="mso-spacerun: yes;"> </span>By this time, the goal was to
stop the seizures.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">By
3:30 p.m., the seizures hadn’t stopped and he was wheezing, confused, shaky and
pretty much out of it.<span style="mso-spacerun: yes;"> </span>He was given
Ativan as well as a loading dose of Vimpat (a medication he was not on at the
time).<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">After
all that medication, the 3:30 seizure was the last one for the day.<span style="mso-spacerun: yes;"> </span>Robert’s breathing continued to be labored
and he felt very warm to me.<span style="mso-spacerun: yes;"> </span>I asked the
nurse take his temperature and, sure enough, it was high and his pulse rate was
extremely high.<span style="mso-spacerun: yes;"> </span>Robert most likely
aspirated during the seizures causing <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5564131/">aspiration
pneumonitis</a> (this is a frequent occurrence during Robert’s seizure
clusters).<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Rich
took over that night and noted that Robert tried to do his word search puzzle
but ended up just holding the pen and paper.<span style="mso-spacerun: yes;">
</span>They both had a restless night due to the doctors starting IV antibiotics
and the IV getting clogged with the antibiotics/malfunctioning.<span style="mso-spacerun: yes;"> </span>At this point, Robert clinically had sepsis
but if you are going to get sick, the hospital is the best place to do it!<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">It
was quite a balancing act of trying to continue to get as much information
about his seizures while also treating the aspiration pneumonia.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">The
hope was the doctors could still capture a seizure during the SPECT so he was
taken to radiology Thursday morning.<span style="mso-spacerun: yes;"> </span>The
isotope has a short shelf life so they waited for a seizure for as long as they
could.<span style="mso-spacerun: yes;"> </span>I couldn’t go to radiology with
him so I went to Starbucks, came back to the hospital cafeteria and got
something to eat and tried to relax.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">After
several hours, Robert was back in the room.<span style="mso-spacerun: yes;">
</span>Unfortunately for the purposes of the test and gaining more information,
he didn’t have a seizure.<span style="mso-spacerun: yes;"> </span>They
rescheduled the SPECT for Friday morning.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Robert
was not going to be released on Friday as originally planned since he needed to
be seizure free for 24 hours and he was still being treated for the pneumonia.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">They
changed his antibiotics to Vancomycin on Friday.<span style="mso-spacerun: yes;"> </span>He was still running a high fever and was not
on his usual seizure medications.<span style="mso-spacerun: yes;"> </span>They wanted
to try the SPECT scan again.<span style="mso-spacerun: yes;"> </span>I was
exhausted by this point, Robert was an absolute mess of confusion and illness,
and I was ready to call off the SPECT.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I ultimately
decided to let them try it one more time.<span style="mso-spacerun: yes;">
</span>We had already been this far and I wanted the doctors to get as much
information as possible so we could decide on treatment options later.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Finally!<span style="mso-spacerun: yes;"> </span>They were able to capture a seizure on the
SPECT scan.<span style="mso-spacerun: yes;"> </span>Once he was back in the
room, they loaded him up with an IV of Depakote and started his regular
medications.<span style="mso-spacerun: yes;"> </span>All the leads were removed
from his head!<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Now
we had to get him past the infection.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv9N_M2oRlwvX694Ox2xMsfllVw7xMU-Ov1lxLcXb4_th3l1_JWPdb3sK1u_k4SW5zINU7a3jfdhleqbiA7Yb4wCGh50-16bUl99fFeuvygvTwghR6Pg2PiuVkaaOXSYz3P-vuhUSd-g6k/s1600/IMG_9057.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv9N_M2oRlwvX694Ox2xMsfllVw7xMU-Ov1lxLcXb4_th3l1_JWPdb3sK1u_k4SW5zINU7a3jfdhleqbiA7Yb4wCGh50-16bUl99fFeuvygvTwghR6Pg2PiuVkaaOXSYz3P-vuhUSd-g6k/s320/IMG_9057.JPG" width="320" /></a></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Robert
was put on another antibiotic (I’ve lost track of how many they tried but I
think we’re up to four or five).<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Later
that day, his white blood count was trending down and by Saturday the doctor
left it to me to decide if I should take Robert home or keep him one more
night.<span style="mso-spacerun: yes;"> </span>I opted to keep him on the IV
antibiotics one more night just to be on the safe side.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Robert
was more alert and feeling better by Saturday afternoon so I took him on a
field trip to the cafeteria.<span style="mso-spacerun: yes;"> </span>We were
almost at the end of this ordeal!<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Robert’s
WBC was low enough on Sunday that I was comfortable taking him home.<span style="mso-spacerun: yes;"> </span>I brought donuts for the nurses to thank them
for their care during our eventful week and was happy this was over.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">My
overriding hope after all this was that the doctors gained enough information to
make a recommendation on treatment going forward.<span style="mso-spacerun: yes;"> </span>I definitely did not want us to have gone through
this for nothing.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Six
weeks later, I had my <a href="http://www.robertssister.com/2018/06/dont-freak-out-but-i-had-stroke.html">stroke</a>
and I will share in my next post what we learned from this VEEG, our treatment
options and how my stroke plays into our decisions. <o:p></o:p></span></div>
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<br /></div>
<br /><div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com0tag:blogger.com,1999:blog-3821611713908924761.post-76668032702269851492018-07-01T19:37:00.000-07:002018-07-01T19:37:14.098-07:00What This Caregiver Misunderstood About Self-Care<br />
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<span style="font-family: "Times New Roman", serif; font-size: 12pt;">As
a caregiver, I know the importance of self-care.</span><span style="font-family: "Times New Roman", serif; font-size: 12pt;"> </span><span style="font-family: "Times New Roman", serif; font-size: 12pt;">Heck, my friends and co-authors have written
books about it!</span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
know, <i style="mso-bidi-font-style: normal;">really know</i>, how critical
self-care is for caregivers.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKP4mo9zR2JU97ic2jZn15h5PcKeZv4uYdslJ8nX9qBuzf6Md-Xf4FvREYKD7fmC2IDHHmx55p7JHnX131IhBlsAIqvkEDRJZK6IRP05hJZ9MvsmlPhkwMm20TyBMFq5YYd7EehJGeQCbZ/s1600/co-caregivers+-+trish+and+rk+in+rome.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1179" data-original-width="1600" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKP4mo9zR2JU97ic2jZn15h5PcKeZv4uYdslJ8nX9qBuzf6Md-Xf4FvREYKD7fmC2IDHHmx55p7JHnX131IhBlsAIqvkEDRJZK6IRP05hJZ9MvsmlPhkwMm20TyBMFq5YYd7EehJGeQCbZ/s320/co-caregivers+-+trish+and+rk+in+rome.JPG" width="320" /></a></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">It
is extremely important for caregivers to find a moment to breathe.<span style="mso-spacerun: yes;"> </span>To call a friend.<span style="mso-spacerun: yes;"> </span>To treat ourselves to a pedicure.<span style="mso-spacerun: yes;"> </span>To continue to paint or take photos or garden
or spend time with grandchildren – whatever our passion might be.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">All
of that is critical to the well-being of caregivers.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">It
isn’t enough, though.<span style="mso-spacerun: yes;"> </span>Not even
close.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">After
my </span><a href="http://www.robertssister.com/2018/06/dont-freak-out-but-i-had-stroke.html"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">small stroke</span></a><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;"> I realized I
completely misunderstood self-care.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Stress
can be very deceiving.<span style="mso-spacerun: yes;"> </span>Sure, a pedicure
can be glorious for an hour and even for a little while afterwards but it does
not peel away the layers of stress that build up while caregiving.<span style="mso-spacerun: yes;"> </span>What I have learned is that stress wraps you
up like a cocoon until you can barely breathe and it does so quickly and
quietly.<span style="mso-spacerun: yes;"> </span>We may not even realize how
ensconced stress is in our very soul because we are too busy caring for someone
else (or several someones).<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">After
my stroke, I realized that pedicures and massages were terrific ways to relax
for a bit but it was not the self-care I needed.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
knew I was a caregiver who gave it my all but I had forgotten to take care of
myself too.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Self-care
has to include making time for doctor appointments for ourselves.<span style="mso-spacerun: yes;"> </span>I actually went in for my preventative care
mammograms and had annual blood work done but I didn’t pay any attention to the
results.<span style="mso-spacerun: yes;"> </span>I had fairly high cholesterol
for years but never talked to my doctor about it.<span style="mso-spacerun: yes;"> </span>It didn’t occur to me to mention that my mom
also had high cholesterol and that my dad had incredibly high blood
pressure.<span style="mso-spacerun: yes;"> </span>As a caregiver, I would have
logged all of this information for my loved one and informed the doctors and
helped formulate a plan of action.<span style="mso-spacerun: yes;"> </span>For
me?<span style="mso-spacerun: yes;"> </span>I didn’t do one thing about it.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDWrTQRtTNKP1FJN3BqpQ2Z2JXYLjM9uNN596Ad1Xzzqo3ttRtEsrSXQGqE-4PQSh16CpdxkirBImyFVXSHdFpZPfhM4WWqQx3l6nrNLOHSO0NAgKM6KiY2xIfEQ_HJBqNXoeFm4ntULUS/s1600/photo+1.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDWrTQRtTNKP1FJN3BqpQ2Z2JXYLjM9uNN596Ad1Xzzqo3ttRtEsrSXQGqE-4PQSh16CpdxkirBImyFVXSHdFpZPfhM4WWqQx3l6nrNLOHSO0NAgKM6KiY2xIfEQ_HJBqNXoeFm4ntULUS/s320/photo+1.JPG" width="240" /></a><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;"><o:p> </o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Self-care
has to include exercise.<span style="mso-spacerun: yes;"> </span>I know –
annoying!<span style="mso-spacerun: yes;"> </span>This is something I always
told myself I should do but rarely did.<span style="mso-spacerun: yes;">
</span>I absolutely loathed it when I read how important it was to
exercise.<span style="mso-spacerun: yes;"> </span>Who were these people who had
all this time? <span style="mso-spacerun: yes;"> </span>I, as a caregiver,
certainly cannot find the time to exercise.<span style="mso-spacerun: yes;">
</span>In fact, I convinced myself that the physical labor I was doing for
Robert and the constant movement of caregiving was enough exercise.<span style="mso-spacerun: yes;"> </span>Certainly the restocking of supplies, taking
Robert to and from the bathroom and helping him change his clothes – all of
that – was enough exercise for me.<span style="mso-spacerun: yes;"> </span>I was
constantly on the move until I collapsed into bed exhausted. <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">That
all changed after my stroke.<span style="mso-spacerun: yes;"> </span>My doctor
said to exercise and, after hits and misses of the best time to do it, I found
a time.<span style="mso-spacerun: yes;"> </span>I found 30 minutes in my day to
walk.<span style="mso-spacerun: yes;"> </span>In fact, sometimes I can even find
an hour.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Self-care
has to include noticing what we, as caregivers, put in our mouths.<span style="mso-spacerun: yes;"> </span>Are we drinking soda or water or too much alcohol?<span style="mso-spacerun: yes;"> </span>(I hated drinking water and would often drink
soda.<span style="mso-spacerun: yes;"> </span>Worse, sometimes I would go all
day without drinking anything.)<span style="mso-spacerun: yes;"> </span>Stress,
hospital stays and other emergencies are terrible for our eating and drinking
habits.<span style="mso-spacerun: yes;"> </span>This was a very busy year in the
hospital for our family and I routinely grabbed a pastry, French fries,
brownies or other junk food to sustain me.<span style="mso-spacerun: yes;">
</span>In fact, during one particularly stressful time around Easter I
literally only ate Cadbury mini eggs for an entire day.<span style="mso-spacerun: yes;"> </span>No joke.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Go
ahead and gasp but I assure you I am not the only caregiver to eat crap on a
regular basis.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">All
of the self-care quick refreshers I’ve written about in the past are important
but I also know they are not enough.<span style="mso-spacerun: yes;">
</span>What caregivers really need is respite.<span style="mso-spacerun: yes;">
</span>I mean a real respite.<span style="mso-spacerun: yes;"> </span>A length
of time that does not include sorting medications, dispensing medications,
taking vitals, washing urine soaked clothes or driving to physical therapy and
doctor appointments (all while working full-time). <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwltpWCPdpHVdRW_fn6Nxw8RWEd1NEfiC1qOmzZs1SoQBBlKPEh97WmigeEsJhNOVxsGUYrdLhbeyzHlRiMeH8a5o_erJqWTcS2AvTT1pV_n0pVIecnxl_Tr8oaGRKwhHhKUCkyaaqcJSP/s1600/AOC+-+pic+3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwltpWCPdpHVdRW_fn6Nxw8RWEd1NEfiC1qOmzZs1SoQBBlKPEh97WmigeEsJhNOVxsGUYrdLhbeyzHlRiMeH8a5o_erJqWTcS2AvTT1pV_n0pVIecnxl_Tr8oaGRKwhHhKUCkyaaqcJSP/s320/AOC+-+pic+3.jpg" width="320" /></a></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">A
respite that includes getting as much sleep as we need!<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Unfortunately,
respite is very hard to come by for caregivers.<span style="mso-spacerun: yes;">
</span>It is incredibly difficult to arrange and usually impossible
to find.<span style="mso-spacerun: yes;"> </span>Robert has a social worker who
is supposed to find us 14 days of respite – per year!<span style="mso-spacerun: yes;"> </span>I can’t even imagine such a luxury!<span style="mso-spacerun: yes;"> </span>However, that benefit is on paper only.<span style="mso-spacerun: yes;"> </span>It is actually fiction because there are not
enough care homes available for Robert’s level of care.<span style="mso-spacerun: yes;"> </span>This creates more work for me to find a
Skilled Nursing Facility or other care facility to accept Robert for a short
period of time.<span style="mso-spacerun: yes;"> </span>Not to mention the cost
involved in sending him to a private pay SNF!<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Caregivers
need the respite but we have to work our butts off (even more than we already
do) to get it.<span style="mso-spacerun: yes;"> </span>Sometimes we give up and
just live with the fact that respite is not available.<span style="mso-spacerun: yes;"> </span>Sometimes we just can’t afford a
respite.<span style="mso-spacerun: yes;"> </span>Caregiving is expensive enough!<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
am not giving up this year and, especially after the experience with the
Skilled Nursing Facility last year, I will make sure Robert is assessed
properly so he does not suffer falls again.<span style="mso-spacerun: yes;">
</span>I will make sure his medication schedule is attached to the doctor’s
referral so he gets his medication when he is supposed to and I will keep my
fingers crossed for success.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
will try not to worry while I am away.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Self-care
is hard work but it is vital and it is more than a moment or two of peace and quiet.
<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
don’t know if I would have listened to anyone saying all this before I had my
stroke but I hope someone listens now.<span style="mso-spacerun: yes;"> </span>I
thought I was doing enough with pedicures and massages but it was not
enough.<span style="mso-spacerun: yes;"> </span>I won’t give those up because
they are fantastic but they are not enough.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Not
nearly enough.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Caregivers:
you are too important not to take care of yourself too.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman", serif; font-size: 12pt;">We
are worth the effort too.</span><span style="font-family: "Times New Roman", serif; font-size: 12pt;"> </span></div>
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<br /><div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com0tag:blogger.com,1999:blog-3821611713908924761.post-3727243297375973612018-06-24T18:49:00.003-07:002018-06-25T05:39:32.585-07:00Making Changes and Even Accepting Help<br />
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<span style="font-family: "times new roman" , serif; font-size: 12pt;">Let’s get this out of the way first:</span><span style="font-family: "times new roman" , serif; font-size: 12pt;"> </span><span style="font-family: "times new roman" , serif; font-size: 12pt;">Yes, I still have some residual numbness and tingling from my </span><a href="http://www.robertssister.com/2018/06/dont-freak-out-but-i-had-stroke.html" style="font-family: "Times New Roman", serif; font-size: 12pt;">small stroke</a><span style="font-family: "times new roman" , serif; font-size: 12pt;">.</span><span style="font-family: "times new roman" , serif; font-size: 12pt;"> </span><span style="font-family: "times new roman" , serif; font-size: 12pt;">I wake up every day assessing my numbness.</span><span style="font-family: "times new roman" , serif; font-size: 12pt;"> </span><span style="font-family: "times new roman" , serif; font-size: 12pt;">Thankfully, the intensity is getting less and I rarely feel like I have a fat lip but my face still feels a little frozen and my hand feels like it is still asleep.</span><span style="font-family: "times new roman" , serif; font-size: 12pt;"> </span><span style="font-family: "times new roman" , serif; font-size: 12pt;">It will take time for all of that to go away but not a </span><s style="font-family: "Times New Roman", serif; font-size: 12pt;">day</s><span style="font-family: "times new roman" , serif; font-size: 12pt;"> </span><s style="font-family: "Times New Roman", serif; font-size: 12pt;">minute</s><span style="font-family: "times new roman" , serif; font-size: 12pt;"> second goes by that I am not incredibly grateful at how lucky I was to have this be the only remaining issue from having a stroke.</span><span style="font-family: "times new roman" , serif; font-size: 12pt;"> </span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.0pt;">I am not about to squander that good fortune. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.0pt;">My neurologist said I needed to exercise more (well, technically, <i style="mso-bidi-font-style: normal;">start</i> exercising), drink a lot of water and eat healthy.<span style="mso-spacerun: yes;"> </span>I had already significantly reduced my carbs so, hey, that’s something <span style="mso-spacerun: yes;"> </span>(please don’t mention cake, cookies or ice cream around me or I will be reduced to a puddle of tears of longing and sorrow and no one wants that). <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.0pt;">She also said I needed to reduce my stress.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.0pt;">Oh my!<span style="mso-spacerun: yes;"> </span>That’s a tall order but I am motivated to do it! <span style="mso-spacerun: yes;"> </span>I want this to be my first and LAST stroke. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.0pt;">My ideal way to reduce stress would be to buy a beach house, walk the dogs by the ocean every day, watch sea otters (or seals?) frolic in the water, write and eat the vegetables Richard grows in his garden (we would starve if we depended on me to grow anything). <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.0pt;">The problem with that plan is we do not have a beach house fund, I still need to work if we want to be able to feed the dogs and I really don’t know the difference between a sea otter and a seal.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMKttZo7_cUyGZab4NrAai_BabDSrNW0WhCp8l6GLMr5wlTYcOs4eNDSEejfZ41GwhX13q2TQZunqW1M6hCrhXIEQYrP9g0cnGrH5fxZDYD2IbyEfwyVj-RXBnBE13FwO2_W6_VPfzr6Pj/s1600/IMG_9308.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMKttZo7_cUyGZab4NrAai_BabDSrNW0WhCp8l6GLMr5wlTYcOs4eNDSEejfZ41GwhX13q2TQZunqW1M6hCrhXIEQYrP9g0cnGrH5fxZDYD2IbyEfwyVj-RXBnBE13FwO2_W6_VPfzr6Pj/s320/IMG_9308.JPG" width="320" /></a><span style="font-family: "times new roman" , "serif"; font-size: 12.0pt;">Plan B it is. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.0pt;">We hired a house cleaning service which is the best (and easiest) thing I have done.<span style="mso-spacerun: yes;"> </span>What a load off!<span style="mso-spacerun: yes;"> </span>I wasn’t just stressed from having to keep everything super clean (especially with the illnesses we had going around here last winter) but it was the stress of stressing out because I did not have the time to do it! <span style="mso-spacerun: yes;"> </span>(My stress even has stress!) <span style="mso-spacerun: yes;"> </span>Having housekeepers come twice a month has been a tremendous relief.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.0pt;">I emailed all of Robert’s doctors (he has several!) and told them what was going on.<span style="mso-spacerun: yes;"> </span>One recommended getting a case manager from Robert’s medical center and referred me to a specific person. <span style="mso-spacerun: yes;"> </span>I didn’t even know this position existed!<span style="mso-spacerun: yes;"> </span>She’s been a huge help with referrals for home health agencies as well as for respite care.<span style="mso-spacerun: yes;"> </span>Kudos to Robert’s team for not only caring for him but also recognizing the need to help the caregiver!<span style="mso-spacerun: yes;"> </span>Love those people.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.0pt;">Richard is in charge of grocery shopping but has been laid up with his own health issues.<span style="mso-spacerun: yes;"> </span>He started ordering groceries online and scheduling them for delivery!<span style="mso-spacerun: yes;"> </span>This is so simple but it saves a ton of time and has been a wonderful way for both of us to reduce some of the stress of running a household.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl-6wV-krAxAsopkyQbRC7mpKtTnIkxl8HswjECK06tcK8Uvb7B3jpvX0_O7508-bYn-6ud2Jl-evPDSm9ISi4vKvNzEnmrWZGHORClU-xDRyIiN6O-T_BiuYFAsycEKuvXMWIykow1ao4/s1600/IMG_9240.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl-6wV-krAxAsopkyQbRC7mpKtTnIkxl8HswjECK06tcK8Uvb7B3jpvX0_O7508-bYn-6ud2Jl-evPDSm9ISi4vKvNzEnmrWZGHORClU-xDRyIiN6O-T_BiuYFAsycEKuvXMWIykow1ao4/s320/IMG_9240.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me and Rach in the ER</td></tr>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.0pt;">Robert has been going to physical therapy twice a week but I reduced it to once a week.<span style="mso-spacerun: yes;"> </span>I know that more physical therapy is best for Robert but I also know how stressful it is to make such an outing (not to mention missing some work) in order to take him to these appointments.<span style="mso-spacerun: yes;"> </span>Robert will not suffer from a slight reduction in his PT schedule.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.0pt;">I am still working full-time but reduced my time in the office.<span style="mso-spacerun: yes;"> </span>I leave mid-afternoon and do work from home for a few hours.<span style="mso-spacerun: yes;"> </span>So far, that has been a wonderful change.<span style="mso-spacerun: yes;"> </span>I do wonder if I will be able to continue to work full-time and care for Robert, however.<span style="mso-spacerun: yes;"> </span>For now, I have to if I’m ever going to get that beach house!<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.0pt;">I planned a much needed vacation with Richard (something we’ve wanted to do for a while) and called an agency to help find respite care for Robert.<span style="mso-spacerun: yes;"> </span>I now have two agencies working to find facilities and I will also continue my own search.<span style="mso-spacerun: yes;"> </span>We need this vacation and I refuse to feel guilty about admitting that we need this.<span style="mso-spacerun: yes;"> </span>Respite care is tough to come by and I’ve been told that it may not be possible to find until two weeks before our vacation.<span style="mso-spacerun: yes;"> </span>Yikes!<span style="mso-spacerun: yes;"> </span>That’s a little stressful for a planner like me but I have faith it will work out.<span style="mso-spacerun: yes;"> </span>It has to. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.0pt;">Finding a home health aide is the last thing I am working on.<span style="mso-spacerun: yes;"> </span>This is the absolute toughest thing for me to do.<span style="mso-spacerun: yes;"> </span>It’s not because I don’t think others can do as good of a job as me or Richard but because what is needed is not hard.<span style="mso-spacerun: yes;"> </span>I can do hard things so I can certainly do the little things too!<span style="mso-spacerun: yes;"> </span>I pride myself on plowing through tough times and getting things done.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdIzQsCIhdOXhO_gIYNiJYe_NJymu7dnNJxlZGLpZ64EmoCFYTDeK42uLbApePvgYcQd8PlSof6rHFv4TGzWCmuzzITxm21Odrp0wCtkWr5UZHwm1CUq6vuiLS9rtdZvHRdc-ko0tUdwvx/s1600/IMG_9309.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdIzQsCIhdOXhO_gIYNiJYe_NJymu7dnNJxlZGLpZ64EmoCFYTDeK42uLbApePvgYcQd8PlSof6rHFv4TGzWCmuzzITxm21Odrp0wCtkWr5UZHwm1CUq6vuiLS9rtdZvHRdc-ko0tUdwvx/s320/IMG_9309.JPG" width="240" /></a></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.0pt;">I can do hard things.<span style="mso-spacerun: yes;"> </span></span><span style="font-family: "times new roman" , serif; font-size: 12pt;">That’s practically my personal motto.</span><span style="font-family: "times new roman" , serif; font-size: 12pt;"> </span><span style="font-family: "times new roman" , serif; font-size: 12pt;">I mean, I even have a sign that says that!</span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12pt;">Taking care of Robert is not “hard” but it is time-consuming.</span><span style="font-family: "times new roman" , serif; font-size: 12pt;"> </span><span style="font-family: "times new roman" , serif; font-size: 12pt;">It is a relentless barrage of laundry, changing briefs, helping in the bathroom, bathing, organizing medications and dispensing medications, doing his breathing treatments and walking with him everywhere he goes so he doesn’t fall. </span><span style="font-family: "times new roman" , serif; font-size: 12pt;"> </span><span style="font-family: "times new roman" , serif; font-size: 12pt;">It is taking vitals twice a day and keeping a log of seizure activity and any signs of pneumonia.</span><span style="font-family: "times new roman" , serif; font-size: 12pt;"> </span><span style="font-family: "times new roman" , serif; font-size: 12pt;">It is waking up when he gets sick or confused in the middle of the night and calls out for me.</span><span style="font-family: "times new roman" , serif; font-size: 12pt;"> </span><span style="font-family: "times new roman" , serif; font-size: 12pt;">It is constantly staying vigilant so he stays healthy and, frankly, alive. </span><span style="font-family: "times new roman" , serif; font-size: 12pt;"> </span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12pt;">I just want someone to help out once or twice a week to fold laundry, take Robert to the bathroom, get him into his pjs and help him do his PT exercises.</span><span style="font-family: "times new roman" , serif; font-size: 12pt;"> </span><span style="font-family: "times new roman" , serif; font-size: 12pt;">I would love to have someone stay with Robert while Richard and I went to dinner or just coffee (decaf for me, please).</span><span style="font-family: "times new roman" , serif; font-size: 12pt;"> </span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12pt;">It’s tough for me to let go and allow this extra help in our home because I want them to do things that I know I can do.</span><span style="font-family: "times new roman" , serif; font-size: 12pt;"> </span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.0pt;">Except that I just can’t any more. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.0pt;">That’s the realization.<span style="mso-spacerun: yes;"> </span>Yes, I can do hard things but it’s time for me to allow myself not to do them all the time.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.0pt;">It has only been three weeks since my stroke so I think I have done a good job with the changes.<span style="mso-spacerun: yes;"> </span>I am going to keep walking, drinking water, dreaming of cake, reducing stress and accepting help.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.0pt;">I have to.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.0pt;">That just might be another hard thing that I can do.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /><div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com1tag:blogger.com,1999:blog-3821611713908924761.post-31502005713890403032018-06-09T15:03:00.000-07:002018-06-09T15:03:12.531-07:00Don’t Freak Out but I Had a Stroke <br />
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<span style="font-family: "Times New Roman", serif; font-size: 12pt;">Yep,
that’s what I have been saying to people lately.</span><span style="font-family: "Times New Roman", serif; font-size: 12pt;"> </span><span style="font-family: "Times New Roman", serif; font-size: 12pt;">I look the same but, yes, I had a
stroke.</span><span style="font-family: "Times New Roman", serif; font-size: 12pt;"> </span><span style="font-family: "Times New Roman", serif; font-size: 12pt;">Not a TIA but a small
stroke.</span><span style="font-family: "Times New Roman", serif; font-size: 12pt;"> </span><span style="font-family: "Times New Roman", serif; font-size: 12pt;">My episode in </span><a href="http://www.robertssister.com/2018/04/four-for-four.html" style="font-family: "Times New Roman", serif; font-size: 12pt;">March</a><span style="font-family: "Times New Roman", serif; font-size: 12pt;"> now
appears to have been a TIA.</span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
am okay and I am very, very lucky.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">The
stroke was an <a href="http://www.strokecenter.org/patients/about-stroke/ischemic-stroke/">Ischemic
Stroke</a> in the right side of my <a href="https://www.healthline.com/health/thalamic-stroke">Thalamus</a> and
caused the whole left side of my body to go numb.<span style="mso-spacerun: yes;"> </span>A week ago, I had a couple of episodes like
what happened in March (slight tingling in my hand and face but not bad) just
before my whole left side numbness.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAwOogPf52q-miyRbJ3kL5k_3tUSv67SmYpIa-HkfRz7U3ygqXkXRCOFik45Cy180d_zZOlZdUTG9c5geQgATOC-5oEO4rcoya7YpM3hFIslsRYWNLj_fIxwTFLF82gw7ktd36fOrQoLbv/s1600/IMG_9280.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAwOogPf52q-miyRbJ3kL5k_3tUSv67SmYpIa-HkfRz7U3ygqXkXRCOFik45Cy180d_zZOlZdUTG9c5geQgATOC-5oEO4rcoya7YpM3hFIslsRYWNLj_fIxwTFLF82gw7ktd36fOrQoLbv/s320/IMG_9280.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My new home office decor</td></tr>
</tbody></table>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
knew this was a problem so Rach took me to the ER and I was seen immediately. <span style="mso-spacerun: yes;"> </span>The hospital started their stroke alert protocols
and put me in a room.<span style="mso-spacerun: yes;"> </span>They did a bunch
of neurological tests and I didn’t have any weakness; I was able to read, talk,
touch my finger to my nose and to the doctor’s moving finger and saw all the
fingers she held up.<span style="mso-spacerun: yes;"> </span>I know these neuro
tests as Robert goes through them all the time at his appointments but it was
very surreal having to do them myself. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">My
only symptom was that I had numbness and tingling (kind of like my left side
was asleep).<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">After
passing everything with flying colors, they didn’t think I had a stroke.<span style="mso-spacerun: yes;"> </span>Stroke alert was cancelled but they ran some
blood work and did a CT scan just to be on the safe side.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">They
still didn’t think I had a stroke.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
only had the whole left side numbness.<span style="mso-spacerun: yes;">
</span>(Let me tell you how odd it is to have half your forehead feel
numb!)<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">The
doctor had no idea what the issue was and suggested it was possibly a panic
attack caused by stress.<span style="mso-spacerun: yes;"> </span>Yes, I have a
lot of stress in my life but I haven’t had a panic attack in years and I have
very specific triggers for them.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
knew this wasn’t a panic attack but also know that stress does weird things to
the body.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I didn’t
know why I had numbness, the doctor didn’t know but it seemed reasonable to
think this wasn’t a stroke. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">So
we left the hospital.<span style="mso-spacerun: yes;"> </span>We all thought the
numbness would be gone by morning.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">When
I woke up on Sunday, my leg numbness was gone but I still had the numbness in
my left arm and face.<span style="mso-spacerun: yes;"> </span>My face felt like
I had a Novocain shot from the dentist except without the drooling.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">The
ER doctor called to check on me and became concerned that I still had numbness.
She ordered an MRI and, as luck would have it, there was an appointment later
that afternoon.<span style="mso-spacerun: yes;"> </span>I’ll take it!<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Rach
went with me to the MRI (poor girl was so worried about me and I hate worrying
my family!).<span style="mso-spacerun: yes;"> </span>I tried to convince the
radiology tech to show me my scan but he refused. I pulled the “I won’t know
what I’m looking at” ploy (even though I have seen enough of Robert’s MRIs to
know if mine was normal or not). <span style="mso-spacerun: yes;"> </span>He must
have seen right through that so I left without seeing my scan.<span style="mso-spacerun: yes;"> </span>Oh well.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">The
next morning Richard had a third skin graft surgery so Robert and I drove him to
the hospital and got him settled in pre-op.<span style="mso-spacerun: yes;">
</span>Robert and I waited with him doing his word search book and me answering
emails from work.<span style="mso-spacerun: yes;"> </span>I called to set up an
appointment with my neurologist and found out he had scheduled a phone
appointment for me so I waited for his call.<span style="mso-spacerun: yes;">
</span>He was on vacation but had been answering my emails and was on top of
monitoring what was going on with me.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">He
soon called and told me what happened Saturday night was, in fact, a
stroke.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">You
mean a TIA?<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">No.
<span style="mso-spacerun: yes;"> </span>You had a stroke. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Believe
me, hearing that is enough to practically cause another one! <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">He
told me I needed to start on blood thinners immediately and he wanted me to take
a “load” dose of four pills then one a day along with the aspirin. <span style="mso-spacerun: yes;"> </span>He also increased my cholesterol medication
and told me to go to the ER if I have any other symptoms.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">He
called the meds into the hospital pharmacy since I was already at the hospital
and I took Robert to get them. <span style="mso-spacerun: yes;"> </span>The
pharmacy was up a hill so I set Robert in the shade and told him to stay put.<span style="mso-spacerun: yes;"> </span>He joked he would go to France.<span style="mso-spacerun: yes;"> </span>Funny guy.<span style="mso-spacerun: yes;">
</span>I’m worried about my stroke and he is cracking jokes.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Probably
the best thing for me.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
called Rach, a couple of friends, Other Brother and realized I couldn’t even
tell Richard yet because he was still in surgery!<span style="mso-spacerun: yes;"> </span>After taking the meds and talking to everyone
I started feeling numbness in my leg again and freaked myself out.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Since
the doctor had said to go to the ER if I had any other symptoms, I walked to
the ER, pushing Robert.<span style="mso-spacerun: yes;"> </span>I called Rach for
me and Richard’s brother, Jimmy for Richard.<span style="mso-spacerun: yes;">
</span>Jimmy was actually at the same medical facility at his own doctor’s
appointment so he came over to check on Richard while I went to the ER.<span style="mso-spacerun: yes;"> </span>Rach met me at the ER and ran between me and
Richard to update him when he came out of surgery and to keep an eye on
me.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Robert
sat in a corner of my room and contentedly worked on his word search
puzzle.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
explained to the doctor what was going on and he was very reassuring.<span style="mso-spacerun: yes;"> </span>He explained that it was unlikely I was
having another stroke since I just loaded up with blood thinners.<span style="mso-spacerun: yes;"> </span>He called the neurologist on call and ran
more blood work and did his best to keep me calm. <span style="mso-spacerun: yes;"> </span>He ordered a heart monitor for me and, after a
short while, I was able to leave and visit with Richard in the post-op
room.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">It
was quite a day.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I’ve
since seen a stroke specialist who ordered more tests, more lab work and
answered all my questions. I’m waiting on all the results but, in the meantime,
I need to watch my diet, exercise more and reduce my stress.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Reduce
my stress.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">After
the year I have had, I am ready to do just that.<span style="mso-spacerun: yes;"> </span>Yes, it is cliché but I am going to say it:<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">This
was a wake-up call.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">My
neurologist said I am very young (why, thank you!) and in otherwise good
health.<span style="mso-spacerun: yes;"> </span>She sees no reason why, with
lifestyle changes, this will not be a one-time thing.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">She
even said that my residual numbness in my hand and face and the occasional leg
numbness will most likely go away eventually.<span style="mso-spacerun: yes;">
</span>I would love for the numbness to go away but, right now, I
am using it as a constant reminder that I need to make changes.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
am very motivated to do so and am very grateful the stroke was a small one. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Note
to Universe: Close call with a semi?<span style="mso-spacerun: yes;">
</span>Stroke?<span style="mso-spacerun: yes;"> </span>Got it.<span style="mso-spacerun: yes;"> </span>Message received.<span style="mso-spacerun: yes;"> </span>Loud and clear!<span style="mso-spacerun: yes;"> </span></span><span style="font-family: "Times New Roman", serif; font-size: 12pt;">(And
thank you for not adding dribbling to the face numbness – that would have just
been piling on.)</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com0tag:blogger.com,1999:blog-3821611713908924761.post-62492878165770773682018-05-26T13:37:00.001-07:002018-05-26T13:37:48.181-07:00The Trouble Seeing Miracles in a Challenging Year<br />
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
</div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif; font-size: 12pt;">This
has been such a crappy year (and, yes, I realize it is only half-way over!).</span><span style="font-family: "Times New Roman", serif; font-size: 12pt;"> </span><span style="font-family: "Times New Roman", serif; font-size: 12pt;">I am wishing so hard it would be 2019 that I
actually have written that down when dating a document or logging Robert’s
vitals.</span><span style="font-family: "Times New Roman", serif; font-size: 12pt;"> </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">2019
cannot come fast enough.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Anyone
who knows me knows I do not like to be negative or whiny or mopey or depressed or
wallowing in self-pity but I have seen all of that in myself this year.<span style="mso-spacerun: yes;"> </span>To make matters (and my mood) worse, I kick
myself for not immediately seeing the “bright side” or the “miracles” in a
situation (or several situations, also known as 2018).<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwGUf1uxAj4b6O7bBLbBYVQn2usdhs_o9H3Ni2tk3_LrLS4UNNNDShiEJsu1Nl-9dMtKV9N54V52nASoOhRBbT_G3FFkmzKucMYVQ6gw1nVtYJyqq1XG-cvOnUmjDfU_gfYuC2ygm62rA7/s1600/IMG_7752.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwGUf1uxAj4b6O7bBLbBYVQn2usdhs_o9H3Ni2tk3_LrLS4UNNNDShiEJsu1Nl-9dMtKV9N54V52nASoOhRBbT_G3FFkmzKucMYVQ6gw1nVtYJyqq1XG-cvOnUmjDfU_gfYuC2ygm62rA7/s320/IMG_7752.JPG" width="320" /></a></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Sometimes
life is just a crapfest. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Caregivers
know this yet we get kind of stuck in a bad mental cycle.<span style="mso-spacerun: yes;"> </span>As one of 44 million caregivers, I know there
are others with much worse situations than mine.<span style="mso-spacerun: yes;"> </span>That feeds into my mindset that I “should” be
able to be more positive. <span style="mso-spacerun: yes;"> </span>Not to mention
I am a positive person and get frustrated when I lose that piece of
myself.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Caregivers
also know how difficult it is to continue to talk about everything going
on.<span style="mso-spacerun: yes;"> </span>I get tripped up when people ask me
if things are going better.<span style="mso-spacerun: yes;"> </span>No, not
yet.<span style="mso-spacerun: yes;"> </span>They really aren’t.<span style="mso-spacerun: yes;"> </span>We have a lot going on and some of it is not
better.<span style="mso-spacerun: yes;"> </span>I <i style="mso-bidi-font-style: normal;">want</i> to say things are better and HURRAY life is looking up but
find myself apologizing for things not being better!<span style="mso-spacerun: yes;"> </span>Holy cow, sometimes things are not getting
better; much of what we deal with are chronic conditions that are not going to
get better.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Sometimes
life just sucks. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">When
things are really terrible or continue to not be better, co-workers and the
cashier at the grocery store don’t want to hear that.<span style="mso-spacerun: yes;"> </span>Even some family tires of the near constant
updates of hospital stays, non-healing wounds, seizure clusters, surgeries and
whatever else might come up.<span style="mso-spacerun: yes;"> </span>Ongoing
crap makes people uncomfortable.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Sure,
to the cashier and some co-workers I will say everything is fine (ha! Isn’t
that the standard line for caregivers?)<span style="mso-spacerun: yes;">
</span>To friends and family, sometimes the best I can muster is “things are
stable.”<span style="mso-spacerun: yes;"> </span>And that’s only if they
are!<span style="mso-spacerun: yes;"> </span>That could be for the hour, the day
or, if we’re lucky, for a week.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Who
wants to hear that?<span style="mso-spacerun: yes;"> </span>People want to hear
that you are better!<span style="mso-spacerun: yes;"> </span>Life is on the
upswing!<span style="mso-spacerun: yes;"> </span>We want roses, puppies,
unicorns and rainbows!<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Believe
me, that’s what I want to say.<span style="mso-spacerun: yes;"> </span>I really
do want things to be excellent and happy and carefree!<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">For
caregivers (and I would venture to actually say “for anyone”) that isn’t always
possible. <span style="mso-spacerun: yes;"> </span>Not all the time, anyway. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Sometimes
life piles on.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">It
has taken me a lot of extra effort to be able to see that, yes, we have had
many miracles in the midst of this challenging, difficult, crappy year.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwNbsd_HE5XLxZfibgiblLQDImwDTE83NEts8J4bKjKMqPuVbS0kxMEheUDvsraFibA_3A0LaY8I9iCPeiY6dylD6zZ4Ct5sPQBB3rK_2QFAuoMpNC2OGXJly6xXTei9q2nP2RPmKz9MhA/s1600/IMG_8936.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwNbsd_HE5XLxZfibgiblLQDImwDTE83NEts8J4bKjKMqPuVbS0kxMEheUDvsraFibA_3A0LaY8I9iCPeiY6dylD6zZ4Ct5sPQBB3rK_2QFAuoMpNC2OGXJly6xXTei9q2nP2RPmKz9MhA/s320/IMG_8936.JPG" width="240" /></a><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Our
miracles?<span style="mso-spacerun: yes;"> </span>We have had plenty.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Just
this year, Robert has been in the hospital multiple times for the flu, pneumonia,
sepsis, a respiratory virus and a five day video EEG study which turned into a
week-long stay when his seizures caused aspiration pneumonitis. <span style="mso-spacerun: yes;"> </span>He could have succumbed to sepsis or gone into
status epilepticus but Robert pulls out miracles all the time.<span style="mso-spacerun: yes;"> </span>This year has been no different. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Richard
has had two skin grafts and an intrathecal pump replacement, broken finger and
expects to have another skin graft this summer.<span style="mso-spacerun: yes;">
</span>Richard’s initial skin graft was mostly successful and it is only the
last 10% that we’re trying to get healed.<span style="mso-spacerun: yes;">
</span>His leg pain has diminished greatly and that, in itself, is a miracle. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Carol
has been hospitalized for pneumonia and a fall and has been teetering on the
edge with extremely low blood pressure, a wildly varying pulse and water retention
and an INR number that jumps around more than it should.<span style="mso-spacerun: yes;"> </span>She has lived with us since last November and
having her around has been its own kind of miracle. <o:p></o:p></span></div>
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<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpD6YnqP_eokACgY0WT_vOpMM6osbR2etbJ1inoLCpIL6TyNCqN95VBdWylIJhZI8kZjMvB9_2GYQEH4NMJLB0zC-sQ4Grw9-0yoLoNwc8EXjBfx_MltcrXWqtAsM01KUU0GDtz76apHgi/s1600/2017+-+taffy+4.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="768" data-original-width="1024" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpD6YnqP_eokACgY0WT_vOpMM6osbR2etbJ1inoLCpIL6TyNCqN95VBdWylIJhZI8kZjMvB9_2GYQEH4NMJLB0zC-sQ4Grw9-0yoLoNwc8EXjBfx_MltcrXWqtAsM01KUU0GDtz76apHgi/s320/2017+-+taffy+4.jpeg" width="320" /></a></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Even
our nineteen year old Shih Tzu has had a couple of strokes and, at one point,
didn’t appear to be able to last through the night.<span style="mso-spacerun: yes;"> </span>She has recovered and is back to her feisty ways.<span style="mso-spacerun: yes;"> </span>A miracle is the only way to describe that
feat.<span style="mso-spacerun: yes;"> </span>I am convinced she still hates me
but miracles can only go so far.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Throw
in my own emergency room visit and follow up appointments and scans for
TIA-like symptoms and then getting side-swiped by a semi-truck and I have much
to be grateful for.<span style="mso-spacerun: yes;"> </span>Adding an aspirin
and cholesterol medication to my daily regimen has stopped the scary stroke
symptoms and the whole semi-truck incident is nothing short of a miracle
itself.<span style="mso-spacerun: yes;"> </span>Robert and I had no injuries and
my car is still drivable. <span style="mso-spacerun: yes;"> </span>You would
never guess from the damage that it was caused by a wayward truck driver. <span style="mso-spacerun: yes;"> </span>Volkswagen (and our angels) for the win!<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihd6pgvE5WwZnI5Tm5mliTS7Sp73WCGh7JmWeTWpnl5Ek1ke8mPrssufCtuK6nfvycvggxwsLSoeiBWCHrw8b3GqCN6TP961dfh9VfnBgr_j2Fcco4t5hMYA49aG1u7TEWZJh6eOHyzRQH/s1600/IMG_9171.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihd6pgvE5WwZnI5Tm5mliTS7Sp73WCGh7JmWeTWpnl5Ek1ke8mPrssufCtuK6nfvycvggxwsLSoeiBWCHrw8b3GqCN6TP961dfh9VfnBgr_j2Fcco4t5hMYA49aG1u7TEWZJh6eOHyzRQH/s320/IMG_9171.JPG" width="320" /></a></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Despite
finally being able to see and appreciate the miracles, my stress level is at
maximum capacity.<span style="mso-spacerun: yes;"> </span>All these situations
come with a lot of expense, more doctor appointments, more medications to track
and take up a great deal of time.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Call
me a wimp but I am ready for a break.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
know that for things to change, I need to make changes.<span style="mso-spacerun: yes;"> </span>That is not to say Robert’s seizures will
stop or Richard’s leg will magically heal because those are things we do not
have control over.<span style="mso-spacerun: yes;"> </span>What I can change is what
I do for me so I can better handle the stress of this difficult year.<span style="mso-spacerun: yes;"> </span>Even the phrase “self-care” makes me cringe
sometimes but I know that’s exactly what I need.<span style="mso-spacerun: yes;"> </span>Getting a pedicure with my daughter doesn’t stop
Robert’s seizures or Richard’s pain or a truck from driving into my lane while I
am still there but it does give me an hour to recharge, laugh and get some
pretty toes and relaxed feet.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Planning
a cruise with Richard for our 20<sup>th</sup> anniversary is not going to take
away the stress of whether his leg is ever going to heal but it will give us
some time to focus on something other than the day to day doctor appointments,
upcoming surgeries and caregiving responsibilities.<span style="mso-spacerun: yes;"> </span>(By the way, our 20<sup>th</sup> anniversary
was last year but caregivers have to be flexible. <span style="mso-spacerun: yes;"> </span>In our minds, it is still our 20<sup>th</sup>
anniversary celebration!) <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Even
seriously considering a schedule change at work becomes more of a priority for
me in order to reduce my overload of stress.<span style="mso-spacerun: yes;">
</span>I cannot continue to beat myself up for trying to successfully work a
difficult job and be a compassionate caregiver and feel like I am failing. <span style="mso-spacerun: yes;"> </span>When I am losing patience with actual nice
people at work and at home, something needs to change.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
cannot lose who I am because of the stress of a difficult year and being an
impatient, cranky madwoman is not who I am.<span style="mso-spacerun: yes;">
</span>Change must happen because I am not going to lose myself to worry and
stress. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">It
might take a miracle for change to happen but sometimes we have to create our
own miracles and that is my plan for the second half of this crappy year. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Bring
on the miracles! <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTOjQySwEhohpc7RGj6Fu8XvXSNd0Tv8k8UwpL2egQUhkW64l4Ou9ma7ssnHcW9sXHBapElQtzbUFp1GLnFU0fPRIszMbHQOIVIXqyOyIzyh4ZYAZRSKFhHL8kJkGvVenvFCWLNulfeDet/s1600/miracles+happen.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="452" data-original-width="1024" height="141" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTOjQySwEhohpc7RGj6Fu8XvXSNd0Tv8k8UwpL2egQUhkW64l4Ou9ma7ssnHcW9sXHBapElQtzbUFp1GLnFU0fPRIszMbHQOIVIXqyOyIzyh4ZYAZRSKFhHL8kJkGvVenvFCWLNulfeDet/s320/miracles+happen.jpg" width="320" /></a></div>
<br />
<br /><br />
<div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com0tag:blogger.com,1999:blog-3821611713908924761.post-11538095982187596422018-04-12T05:46:00.004-07:002018-04-12T05:46:50.229-07:00Juggling, Teamwork and a Little Hope<span style="font-family: "Times New Roman", serif; font-size: 12pt;">My
IT guy at work juggled three oranges at work the other day and made it look
pretty easy.</span><span style="font-family: "Times New Roman", serif; font-size: 12pt;"> </span><span style="font-family: "Times New Roman", serif; font-size: 12pt;">(I then told him to get
back to work.)</span><span style="font-family: "Times New Roman", serif; font-size: 12pt;"> </span><span style="font-family: "Times New Roman", serif; font-size: 12pt;">I have tried to learn to
juggle but I am not quite coordinated enough. The juggling I do involves
caregiving, medical appointments and various emergencies.</span><span style="font-family: "Times New Roman", serif; font-size: 12pt;"> </span><br />
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br />
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Caregivers
are experts at this type of juggling and sometimes even <i style="mso-bidi-font-style: normal;">while</i> we work.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Thankfully,
Richard helps with juggling our appointments.<span style="mso-spacerun: yes;">
</span>We have a loose division of duties: he takes his mom to her
appointments, I take Robert to his, Richard goes to his own and I go to my
own.<span style="mso-spacerun: yes;"> </span>(Hopefully, mine will be
short-lived.<span style="mso-spacerun: yes;"> </span><a href="http://www.robertssister.com/2018/04/four-for-four.html">My MRI results</a>
came back normal(!) and I only have a follow-up with the neurologist. Then I’m
crossing myself off the appointment list!) <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;"><br /></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBz49adayA1NprL_Z3ljblyGdtg6BAyCcMlGfAK1ux7Ma0AXZ3QAxjEcnfp6oLJWTZiHO_MBG4BTI9QZ-UDs5hL8plXUxXODMMouFI_dJ2O9TNwUmxyE8fXe5EH11xU6f9G6BVAFoBXZWJ/s1600/IMG_8500.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1594" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBz49adayA1NprL_Z3ljblyGdtg6BAyCcMlGfAK1ux7Ma0AXZ3QAxjEcnfp6oLJWTZiHO_MBG4BTI9QZ-UDs5hL8plXUxXODMMouFI_dJ2O9TNwUmxyE8fXe5EH11xU6f9G6BVAFoBXZWJ/s320/IMG_8500.JPG" width="318" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Family!</td></tr>
</tbody></table>
<br />
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">We
have pre- and post- surgery appointments, wound therapy, neurology, epileptologist,
GP, pulmonary, ENT and cardiology appointments.<span style="mso-spacerun: yes;">
</span>There’s pain specialists, physical therapy, lab work and x-rays when
something is not quite right (like suspected pneumonia or artificial knee
pain).<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">With
the regular appointments and even ER visits or hospital stays we somehow manage
to keep on track.<span style="mso-spacerun: yes;"> </span>(It helps that
Richard, Carol and I coordinate our calendars to be sure we all have the same
information.)<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Sometimes
we have to call in extra help, though.<span style="mso-spacerun: yes;">
</span>Richard’s brothers, either Mark or Jim, will take Carol to her
appointments if they conflict with one of Richard’s appointments.<span style="mso-spacerun: yes;"> </span>Rach jumped in to take me to the ER so
Richard and Carol could stay home with Robert and has stayed home with Robert
while I pick up Richard from the hospital. Mark and Carol jumped in to help
with Robert when he was sick and I needed to take Richard to get staples out of
his leg. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">In
other words, we juggle. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">And
we are very lucky. We are extremely fortunate to have the support of our
families as I know many caregivers do not have that option.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
am extraordinarily grateful to our family for their help and, while it is difficult
for me to ask for help, sometimes I actually do it. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Robert
has a VEEG (video EEG) coming up next week which requires him to be in the
hospital for five days.<span style="mso-spacerun: yes;"> </span>It also requires
someone to be with him all the time.<span style="mso-spacerun: yes;"> </span>As
in, day and night.<span style="mso-spacerun: yes;"> </span>To be clear, I am
talking about all 24 hours in a day.<span style="mso-spacerun: yes;"> </span>For
a week.<span style="mso-spacerun: yes;"> </span>And, we have to be alert and
awake the whole time in order to push a button when he has a seizure. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
do tend to take on a lot but even I realize neither one of us can stay awake
all week.<span style="mso-spacerun: yes;"> </span>Heck, I don’t even think it
would be possible for just me and Richard to do it.<span style="mso-spacerun: yes;"> </span>(Although, that was our initial plan.)<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I texted
Other Brother for help.<span style="mso-spacerun: yes;"> </span>I explained the
situation, told him I was making a schedule and asked if he was able to come up
to be with Robert for a shift. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">“You
mean like through the night?” <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
know.<span style="mso-spacerun: yes;"> </span>It’s a big ask.<span style="mso-spacerun: yes;"> </span>It would be nice to have an extra relief
person so Richard and I weren’t doing the whole week. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">“How
long are the shifts?<span style="mso-spacerun: yes;"> </span>Are there any food
or bathroom breaks?” <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
gave him more info about how the whole thing works, logistically.<span style="mso-spacerun: yes;"> </span>Of course, I am just going off of the booklet
the hospital mailed us – I haven’t actually done this before so don’t know how
it will actually go.<span style="mso-spacerun: yes;"> </span>I mean, does the
nurse come in and poke us if we accidentally doze off?<span style="mso-spacerun: yes;"> </span>Does the guest chair trigger alarm bells if
there’s no movement for a few minutes? <span style="mso-spacerun: yes;"> </span>Or does it just spring us out of the chair to
wake us up? <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif; font-size: 12pt;">After ribbing him for all of his questions (as
only an older sister can), </span><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Other
Brother offered to take two of the overnights which was a huge help. I thanked
him profusely!<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">“Can
I take a laptop?”<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Oh
crap. I thought for sure this was a deal breaker.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Um,
no.<span style="mso-spacerun: yes;"> </span>No laptops or phones.<span style="mso-spacerun: yes;"> </span>We can’t have the signals interfering with
the monitoring equipment.<span style="mso-spacerun: yes;"> </span>I did suggest
long bathroom breaks if he had to use his phone . . . <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi63azL0pg2TP7G2xjX8pR91r-NvLLVg3ob_iS_1s3gG8QuTb8i-no44vXq-shcor3bWSSusFwpiWYHpAwNtlgTddMD9CJoCwV2OvvwujnaR6PU11YIPhnR_dDE-T4h6F6rOJjfh9B0kHzz/s1600/Carol+and+Robert+September+2013.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi63azL0pg2TP7G2xjX8pR91r-NvLLVg3ob_iS_1s3gG8QuTb8i-no44vXq-shcor3bWSSusFwpiWYHpAwNtlgTddMD9CJoCwV2OvvwujnaR6PU11YIPhnR_dDE-T4h6F6rOJjfh9B0kHzz/s320/Carol+and+Robert+September+2013.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Carol and Robert share a special bond</td></tr>
</tbody></table>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
created a schedule for the three of us and sent it to Other Brother.<span style="mso-spacerun: yes;"> </span>He reviewed it with his wife who suggested he
stay in a hotel for a few days so he’s not driving back and forth on no
sleep.<span style="mso-spacerun: yes;"> </span>He can do his shift, sleep in
the hotel, drive the hour or so back to home/work and then repeat it the next
day. (Good thinking!)<span style="mso-spacerun: yes;"> </span>Other Brother revised
the schedule, adding another overnight shift for him with even longer
hours.<span style="mso-spacerun: yes;"> </span>What a wonderful surprise and
such a huge help! <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Carol
is planning on holding down the home front and doing laundry and caring for the
dogs while Richard and I take turns at the hospital and I try to go into work
for an hour or two.<span style="mso-spacerun: yes;"> </span>In fact, she feels
ready to move back to her own home but is postponing it so she can help us out.
(We wish she wouldn’t move home but that’s a different story.)<span style="mso-spacerun: yes;"> </span>Rach and Matt are planning visits to the
hospital to check on us and to the house to check on Grandma.<span style="mso-spacerun: yes;"> </span>Mark even offered to take a shift but he recently
started a new job and I don’t want him missing work on our account.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">We
are very lucky indeed! <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">We
all see the value in the VEEG and know how important it is for Robert to have
this testing.<span style="mso-spacerun: yes;"> </span>This is a step toward
getting the <a href="http://www.neuropace.com/">Neuropace</a> for Robert which
seems to be a very promising treatment for him!<span style="mso-spacerun: yes;">
</span>Robert’s new neurologist thinks he is a great candidate for the
Neuropace and thinks this could significantly reduce his seizures.<span style="mso-spacerun: yes;"> </span>If that happens, he might even be able to
reduce some of his meds.<span style="mso-spacerun: yes;"> </span>Can you
imagine?!<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Everyone
is willing to pitch in because we all see the possibilities of this new
device.<span style="mso-spacerun: yes;"> </span>We see the hope.<span style="mso-spacerun: yes;"> </span>We see Robert’s fervent wish and prayer to be
seizure-free as close to possible as we’ve been.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">This
is truly a team effort of juggling to support each other.<span style="mso-spacerun: yes;"> </span>That is what family is all about and I am so
grateful.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
</div>
<div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com2tag:blogger.com,1999:blog-3821611713908924761.post-15231304026415866702018-04-10T06:33:00.000-07:002018-04-10T06:33:32.627-07:00Four for Four<br />
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12pt;">Well, </span><a href="http://www.robertssister.com/2018/03/coming-up-for-air.html"><span style="font-size: 12.0pt;">that</span></a><span style="font-size: 12pt;"> didn’t
last long. Three of the four people in
my household were hospitalized at least once since December. A couple made two visits. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">Now it’s my turn.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">“You?”<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">That’s been the refrain in my household
too.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">Yep, me. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRI5Jk8W3e_eXFQBvVEM8NNyrrJQYCQuvUJG_e16pGSg-9Nw4B4Qz-qTN7_V5g5Vz3LIRCow6VS4Nf1OdK0CGPk3wD8MVrK3FQcTkUTOCvQv7y0qcjt-mmskYjOH2oYwBY4MWtkyKFwpep/s1600/THK+-+paperwork.jpg" imageanchor="1" style="clear: right; display: inline !important; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRI5Jk8W3e_eXFQBvVEM8NNyrrJQYCQuvUJG_e16pGSg-9Nw4B4Qz-qTN7_V5g5Vz3LIRCow6VS4Nf1OdK0CGPk3wD8MVrK3FQcTkUTOCvQv7y0qcjt-mmskYjOH2oYwBY4MWtkyKFwpep/s320/THK+-+paperwork.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I had to start my own folder</td></tr>
</tbody></table>
<span style="font-size: 12pt;">A little over a week ago I started
feeling numb on the left side of my face, tongue and hand while I was getting
Robert ready for day program.</span><span style="font-size: 12pt;"> </span><span style="font-size: 12pt;">It
happened a few times so, of course I thought what all caregivers would think, I’M
HAVING A STROKE!!!</span><span style="font-size: 12pt;"> </span><span style="font-size: 12pt;">And, just as many
caregivers would react, I waited to see if it went away.</span><span style="font-size: 12pt;"> </span><span style="font-size: 12pt;">I mean, we’re busy! We have people to care
for!</span><span style="font-size: 12pt;"> </span><br />
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">(I did stick my tongue out to see if it
was lopsided and also looked to see if my face was droopy but everything looked
fine.<span style="mso-spacerun: yes;"> </span>I was just tingly!)<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">I went to work (yes, I went to work; stop
yelling at me).<span style="mso-spacerun: yes;"> </span>Only after it happened a
few more times and I told my best friend about it and <i style="mso-bidi-font-style: normal;">she</i> yelled at me to call the doctor or she would take me to the ER
did I actually call the doctor. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">I really tried to get an appointment
that day.<span style="mso-spacerun: yes;"> </span>I certainly didn’t want to go
to the ER!<span style="mso-spacerun: yes;"> </span>I talked to an advice nurse
who said he would send an urgent message to my doctor and someone would call me
back.<span style="mso-spacerun: yes;"> </span>He also said if it happened again
I should go to the ER. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">It happened a few more times at work
while I waited for the doctor to call me back. <span style="mso-spacerun: yes;"> </span>I dreaded wasting hours in a crowded room with
sick people only to be told that I was stressed.<span style="mso-spacerun: yes;"> </span>I know I am stressed!<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">The doctor didn’t call so I went
home.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">(Now is the moment all of you can yell
at me for not immediately heading to the nearest emergency room.)<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">Carol made us all a nice dinner; I got
Robert in bed and changed.<span style="mso-spacerun: yes;"> </span>Then it
happened again: numbness on the left side of my cheek, half my tongue and my
left hand.<span style="mso-spacerun: yes;"> </span>I took my blood pressure and
it was extremely high. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">At this point, even I (being the most
obstinate caregiver on the planet) decided I should go to the ER.<span style="mso-spacerun: yes;"> </span>I walked into the living room and told
Richard and Carol in one sentence that I was having numbness on my left side
and that I should go to the ER. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">Both of them looked at me and said,
“You?!”<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">Yep, me. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">Once I told them this had been happening
all day, their looks changed from confusion to a combination of worry and
anger.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">Life is complicated right now so since
Richard had just had his second skin graft surgery and was on crutches, Carol
can’t/shouldn’t drive (although she offered) and Robert needed someone home with
him, I called my daughter.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">I explained what had been going on and
told Rachel I needed a ride to the ER.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">“You?!” <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">Yep, me.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">Rach picked me up and we drove to the
hospital, both kind of in shock that I was the person having a medical
problem.<span style="mso-spacerun: yes;"> </span>On the way, we talked about how
I will probably hit our deductible of our high deductible health insurance –
and it’s only March!<span style="mso-spacerun: yes;"> </span>She assured me I
didn’t have a brain tumor because we already have one of those in the family
and the odds of two of us having one had to be astronomical.<span style="mso-spacerun: yes;"> </span>We talked about her work, my work, Richard’s
leg, and everything else we tend to talk about with a few laughs thrown in
(because that’s what we do).<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">In between topics, I apologized
profusely for taking up her Friday night. <span style="mso-spacerun: yes;"> </span>She wouldn’t hear of it but we both were
convinced we’d be in the ER all night long.<span style="mso-spacerun: yes;">
</span>Throughout the entire ordeal, Joelle (the best friend mentioned before)
and Richard texted to find out how it was going.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">We checked in upon arrival and marveled
at the empty waiting room.<span style="mso-spacerun: yes;"> </span>We immediately
were escorted back to a couple of nurses.<span style="mso-spacerun: yes;">
</span>They checked my vitals and weighed me, laughing politely when I told
them I had very heavy shoes on.<span style="mso-spacerun: yes;"> </span>My blood
pressure was very high but I wasn’t that concerned since I was very stressed
out that I was having a stroke.<span style="mso-spacerun: yes;"> </span>Then I
stressed that I was going to actually cause myself to have a stroke because I
was so stressed out.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">It is no fun to be in my head with Worst
Case Scenarios swirling around. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">We were then led into another waiting
room (D) which was packed.<span style="mso-spacerun: yes;"> </span>Ahh.<span style="mso-spacerun: yes;"> </span>Everyone is in these back rooms – I am sure
A, B and C were also packed.<span style="mso-spacerun: yes;"> </span>We found
one seat which Rach insisted I take while she pulled up a kid’s chair from the
kid’s activity table.<span style="mso-spacerun: yes;"> </span>Good thing Rach is
little! <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">While discussing how this was going to
be where we waited for hours, we were called back to see a doctor.<span style="mso-spacerun: yes;"> </span>He had me repeat my symptoms then gave me a short
neurological exam.<span style="mso-spacerun: yes;"> </span>I was intrigued to be
the one doing the exam since I am always the one watching Robert going through
the exercises.<span style="mso-spacerun: yes;"> </span>He ordered an EKG, lab
work and a CT scan.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">Oh, this must be where we will have to
wait for a while. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">Nope.<span style="mso-spacerun: yes;">
</span>A nurse immediately came in to conduct the EKG; another nurse followed
and drew my blood who then took me straight to radiology.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">The longest wait was after all the tests
and that was only for an hour.<span style="mso-spacerun: yes;"> </span>We saw
the same doctor who told me everything came back normal.<span style="mso-spacerun: yes;"> </span>Phew!<span style="mso-spacerun: yes;">
</span>The thyroid test was the only one that hadn’t come back yet so I thought
that might be the problem.<span style="mso-spacerun: yes;"> </span>I was advised
to follow up with my regular doctor in a few days.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">Rach and I thanked the doctor, paid and made
our way home.<span style="mso-spacerun: yes;"> </span>We were shocked we were in
the ER for a total of two hours!<span style="mso-spacerun: yes;"> </span>It was
the shortest ER visit I have ever experienced (whether as the patient, caregiver
or concerned family member)!<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">Since that visit, I have continued to
experience the same symptoms so I visited my General Practitioner who ordered
an MRI and put me on a low-carb diet.<span style="mso-spacerun: yes;"> </span>He
also started me on low dose aspirin and wants me on a high cholesterol drug
(which I am resisting but he made me shake on it. I suppose a deal’s a
deal.).<span style="mso-spacerun: yes;"> </span>I only have borderline high
cholesterol but he wants to cover all his bases.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">I started the low carb diet which is
making me very cranky.<span style="mso-spacerun: yes;"> </span>I mean, seriously!<span style="mso-spacerun: yes;"> </span>Who can live without chocolate, cookies,
cake, muffins and iced chais?<span style="mso-spacerun: yes;"> </span>Oh, and
caffeine.<span style="mso-spacerun: yes;"> </span>I was off caffeine for a long
time but started up again during all the hospital stays.<span style="mso-spacerun: yes;"> </span>I thought that might be the cause of all this
too.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">The MRI is done and now I wait for my
appointment with a neurologist to get the results.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">I still can’t believe I am the patient
now, navigating this healthcare maze.<span style="mso-spacerun: yes;"> </span>It
feels like I am being sucked into a system that revolves around appointments,
tests, waiting, medications and more appointments.<span style="mso-spacerun: yes;"> </span>And I can’t even do it with my go-to comfort
food or caffeine!<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">It has been a stressful few months so I
am actually hoping that stress or caffeine is causing these symptoms.<span style="mso-spacerun: yes;"> </span>I still can’t believe I am now the patient.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 12.0pt;">Yep. Me. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com1tag:blogger.com,1999:blog-3821611713908924761.post-84227659814736723752018-03-18T22:14:00.003-07:002018-03-18T22:14:47.981-07:00Coming Up For Air<br />
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">Well,
not really. </span><span style="font-family: "Times New Roman", serif;"> </span><span style="font-family: "Times New Roman", serif;">That’s actually wishful
thinking on my part but I had this title in my mind for a month when I really
thought things were settling down.</span><span style="font-family: "Times New Roman", serif;"> </span><span style="font-family: "Times New Roman", serif;"> </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">Ironically,
I started writing about Robert when I began caring for him but stopped (no –
let’s say paused) <i style="mso-bidi-font-style: normal;">because</i> I was
caring for Robert.<span style="mso-spacerun: yes;"> </span>My original intent
was to keep family and friends up to date and then I realized there was a lot
of caregiving information to share as well as people who followed along after
falling in love with Robert.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">And
now I am neglecting this space! <o:p></o:p></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir3rIGnSfCGhOS7eHDRFVL9mNFzJJli7mIMCxIYFRNdmNL76OOPyR7TmKskcHCnzI_ER-3hmgjYuzVXiaWxpZXMqtPS9Q8q_I9uaPRJljNSCvs82o8Tj1gNg4bQ7Z4TI98di19CnL3rhF1/s1600/IMG_8564.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1593" data-original-width="1600" height="318" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir3rIGnSfCGhOS7eHDRFVL9mNFzJJli7mIMCxIYFRNdmNL76OOPyR7TmKskcHCnzI_ER-3hmgjYuzVXiaWxpZXMqtPS9Q8q_I9uaPRJljNSCvs82o8Tj1gNg4bQ7Z4TI98di19CnL3rhF1/s320/IMG_8564.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Robert and Carol - before getting sick</span></td></tr>
</tbody></table>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "Times New Roman", serif;">Please don’t take it personally. <o:p></o:p></span></i></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">Let’s
catch up! <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<span style="font-family: "Times New Roman", serif;">Carol
(grandma, great-grandma, #1 mother-in-law and most stubborn broad in the
universe) was hospitalized in November and came to temporarily live with us
while she recovered. She has a variety of health issues and it is best she
stays with us. I think she should stay for good but she’s stubborn (as I
mentioned) and refuses to think of the arrangement as permanent.</span><span style="font-family: "Times New Roman", serif;"> </span><span style="font-family: "Times New Roman", serif;">Fine.</span><span style="font-family: "Times New Roman", serif;">
</span><span style="font-family: "Times New Roman", serif;">We’ll be on a week to week trial basis if that makes her feel
better.</span><span style="font-family: "Times New Roman", serif;"> </span><br />
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">Richard
(husband, co-caregiver, Mr. Macgyver, chronic pain sufferer who doesn’t let it
get him down and #1 brother-in-law) has been dealing with a non-healing,
expanding wound on his lower leg. The doctors have sent him to wound therapy
specialists, tried all kinds of wraps, antibiotics (because of recurring
infections) – even maggot therapy!<span style="mso-spacerun: yes;"> </span>(That
was as disgusting yet as fascinating as it sounds.)<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx8n4bibZKm_7ei246mXko7XNUy4imlSJ-J41xbfp9ZguksqWKzQri_3eL90J6em73Csai3o0-SFdLeFQixKcofFlS1aUWalPEKYwQGh89wiVTdT0kdXBZCGmqp0fOJcjvNOb6jy6t1DIM/s1600/IMG_8666.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1593" data-original-width="1600" height="318" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx8n4bibZKm_7ei246mXko7XNUy4imlSJ-J41xbfp9ZguksqWKzQri_3eL90J6em73Csai3o0-SFdLeFQixKcofFlS1aUWalPEKYwQGh89wiVTdT0kdXBZCGmqp0fOJcjvNOb6jy6t1DIM/s320/IMG_8666.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Richard with his good luck angel from<br />our friend, Pegi</span></td></tr>
</tbody></table>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">After
14 months of this wound continuing to grow, they finally suggested a skin graft.<span style="mso-spacerun: yes;"> </span>We were very hopeful Richard’s leg would
finally heal and his pain would go away.<span style="mso-spacerun: yes;">
</span>Make no mistake: this wound was extremely painful. He usually had to
clean it twice a day which meant scrubbing it (yikes!).<span style="mso-spacerun: yes;"> </span>There was a great deal of screaming (from him)
and a lot of hoping the neighbors didn’t call the police on us (from me). Surgery
would be a welcome relief for everyone! <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">Surgery
was a week and a half before Christmas but he was out and home before Christmas
and our hopes were high for a successful graft. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">Robert
(most excellent brother, word search king and Family Feud fanatic) woke up with
a fever and cough on Christmas.<span style="mso-spacerun: yes;"> </span>We had a
house full of family over to celebrate so loaded him up with his fever reducer
and antibiotics that we keep on hand for just such occasions.<span style="mso-spacerun: yes;"> </span>By the end of the day, Robert could not even
stand.<span style="mso-spacerun: yes;"> </span>It took both Other Brother and I to
take him to the bathroom and keep his legs under him so I could change his
brief. We got him to bed and hoped the antibiotics would kick in by
morning.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">Yeah,
that didn’t happen.<span style="mso-spacerun: yes;"> </span>(This isn’t a
sitcom, after all.) <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">Richard
had a surgery follow-up appointment the next day so his brother, Mark, and
Carol stayed with Robert while I took Richard to the doctor.<span style="mso-spacerun: yes;"> </span>Robert was safe in bed but still running a
fever.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">The
leg was looking good!<span style="mso-spacerun: yes;"> </span>The doctor was
very pleased and thought the graft had taken “98%”!<span style="mso-spacerun: yes;"> </span>Woohoo!<span style="mso-spacerun: yes;">
</span>We were ecstatic.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">As
we waited for a prescription, Mark called to tell us Robert was burning up. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">Oh,
crap.<span style="mso-spacerun: yes;"> </span>So much for the antibiotics.<span style="mso-spacerun: yes;"> </span>I had Mark give Robert more Tylenol and we
hurried home.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtUpRQAKYSffQyLjEHgUiZ38R14N_1HfyVyOFlej-UXt1OWMhf1aUvfGj1zO9-eRVpclEE_0_J8LRvzBx_XwOFme_hpwSqJO9Me4n-Qp0X85XgKD-j3BmVNXpYFsEQK-Cww_emF0-5xJeN/s1600/IMG_8731.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtUpRQAKYSffQyLjEHgUiZ38R14N_1HfyVyOFlej-UXt1OWMhf1aUvfGj1zO9-eRVpclEE_0_J8LRvzBx_XwOFme_hpwSqJO9Me4n-Qp0X85XgKD-j3BmVNXpYFsEQK-Cww_emF0-5xJeN/s320/IMG_8731.JPG" width="320" /></a></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">By
the time we got home, Robert was not breathing well so we had to call the
paramedics.<span style="mso-spacerun: yes;"> </span>I try to avoid hospital
stays but this was unavoidable.<span style="mso-spacerun: yes;"> </span>Thank
goodness we did send him to the hospital because, as it turned out, he had the
flu and pneumonia along with a strange skin bacteria that caused sepsis! <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">I
couldn’t believe how quickly Robert went downhill.<span style="mso-spacerun: yes;"> </span>The hospital was the best place for him for
now.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">The
last week of December passed in a blur but, as it happens, my birthday is that
week!<span style="mso-spacerun: yes;"> </span>Richard and Rachel (fabulous
daughter, animal lover and person who can make me double over with laughter)
made my birthday extra special. After visiting Robert in the morning and talking
to the doctors, we had breakfast at one of my favorite restaurants. Carol and
my BFF came to make the breakfast even more special. Afterwards, Rach took me
for a surprise spa pampering session which was just what I needed.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">Bliss!
<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">Within
a few days it was New Year’s Eve!<span style="mso-spacerun: yes;"> </span>Robert
continued to recover in the hospital with IV antibiotics, Richard’s leg was
almost like new and none of us had caught the flu from Robert.<span style="mso-spacerun: yes;"> </span>Carol was having issues with her blood
pressure dipping too low and was very tired but the flu seemed to have bypassed
all of us. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">Phew!<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">The
three of us had a simple dinner and while I was doing dishes in the kitchen and
Richard was stretching his back in the living room, we heard Carol coughing in
the dining room.<span style="mso-spacerun: yes;"> </span>Then a loud thud.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">It
took us a second to rush in to her (she drops things all the time and gets
irritated if we immediately come running.<span style="mso-spacerun: yes;">
</span>Remember? Stubborn!).<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">I
got to her first and she was out cold. And bleeding from the head. <span style="mso-spacerun: yes;"> </span>I yelled for Richard to call 911 while I shook
Carol to wake up – all the while thinking she had a heart attack and had died. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">It
took a minute but she woke up and we did what we could to figure out where the
bleeding was coming from (her head? her nose?) and stop it.<span style="mso-spacerun: yes;"> </span>Paramedics came and Carol was alert and
coherent.<span style="mso-spacerun: yes;"> </span>It didn’t appear to be a
stroke but was probably from the darn low blood pressure.<span style="mso-spacerun: yes;"> </span>She passed out and hit the corner of the wall
which caused a gash or two.<span style="mso-spacerun: yes;"> </span>Since she is
on blood thinners, there was a lot of blood.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">Off
she went in the ambulance with Richard following close behind.<span style="mso-spacerun: yes;"> </span>I stayed home to clean up what looked like a
crime scene.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">Did
I mention all the blood? <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">Happy
New Year.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">January
was spent shuttling between hospitals (you didn’t think Robert and Carol could
be in the same hospital, right? That’d be too easy!<span style="mso-spacerun: yes;"> </span>At least the hospitals were just a few miles
apart though.) <span style="mso-spacerun: yes;"> </span>Carol was released to a
care facility to get physical therapy where she promptly got the flu.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">Back
to the hospital for Carol.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir6bLELxRmNe5G1u_dWOtuij96no5Zy3orkigMKjBuarpNBOeA21LL2oAIVjwwn9awRbbyAos5F_OzoPEWudoU0R-zjWkjp_5ywuN5kcx1l24br6cJFqNB3HzdalsWThYuoRp_QL3u7Arp/s1600/IMG_8753.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir6bLELxRmNe5G1u_dWOtuij96no5Zy3orkigMKjBuarpNBOeA21LL2oAIVjwwn9awRbbyAos5F_OzoPEWudoU0R-zjWkjp_5ywuN5kcx1l24br6cJFqNB3HzdalsWThYuoRp_QL3u7Arp/s320/IMG_8753.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Robert enjoying a field trip to the hospital cafeteria</span></td></tr>
</tbody></table>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">Robert
had to have long-term antibiotics so had a picc line installed in his neck
since his arm veins were shot.<span style="mso-spacerun: yes;"> </span>He went
to the physical therapy rehab floor of the hospital and eventually came home.<span style="mso-spacerun: yes;"> </span>Carol soon came home too.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">Have
I lost you, yet?<span style="mso-spacerun: yes;"> </span>Let me recap: of the
four people living in our house, three were hospitalized within three weeks of
each other.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">(This
blog could be super short if I just stayed with the recaps.) <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">Somewhere
in there, I got sick too (but not get-to-a-hospital sick), orchestrated an
office expansion/move for work and we converted Robert and Carol’s bathroom tub
to a walk-in shower (thanks to Matt, #1 son-in-law). </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">I
was hoping for some downtime after the office move and all the hospitalizations.
Who wouldn’t! <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">Richard’s
leg still had a spot about the size of a quarter that wouldn’t heal so that
became a bit worrisome. Carol’s cough continued while she also still declared
she would be returning to her own home very “soon.”<span style="mso-spacerun: yes;"> </span>Robert again became sick with a high fever
and ended up in the ER.<span style="mso-spacerun: yes;"> </span>This time it was
a respiratory virus so it had to run its course.<span style="mso-spacerun: yes;"> </span>It dramatically affected his breathing,
though, and he had to be on continuous oxygen, even after returning home.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">It
is the middle of March and I am sitting in the office I now share with Richard
so Carol can have her own room (temporarily, of course).<span style="mso-spacerun: yes;"> </span>Richard has a second skin graft scheduled for
later this month but it is outpatient surgery and not a week long hospital stay.<span style="mso-spacerun: yes;"> </span>Carol has her cough again/still and has been
sleeping a great deal but at least her blood pressure is normal.<span style="mso-spacerun: yes;"> </span>Robert still has a bunch of congestion but we
are keeping up with his pulmonary health exercises and his vitals are fine.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">I
think this is the moment I can come up for air.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;">It
is just a moment but I will take what I can get.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif;"><o:p> <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeWKFEcOeGBMVHx21Lj7CEU7h68CKZJCiiH9X9iAFYatHvPrxugm1f9fjfNYwV8cC08Y0FHP5wTOhrD9r_SGt72POYFuUe55KxBOlxpPwS4xT1gtsByXN95fAdUkT0-lPloaTeOCrhpPVn/s1600/IMG_8747.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeWKFEcOeGBMVHx21Lj7CEU7h68CKZJCiiH9X9iAFYatHvPrxugm1f9fjfNYwV8cC08Y0FHP5wTOhrD9r_SGt72POYFuUe55KxBOlxpPwS4xT1gtsByXN95fAdUkT0-lPloaTeOCrhpPVn/s320/IMG_8747.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Richard and I taking a breather</td></tr>
</tbody></table>
</o:p></span></div>
<br /><div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com0tag:blogger.com,1999:blog-3821611713908924761.post-65545046465195631782017-11-12T20:49:00.000-08:002017-11-12T20:49:20.370-08:00Epilepsy Awareness Day at Disneyland<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman", serif; font-size: 12pt;">I
am already thinking about </span><a href="http://www.epilepsyawarenessday.org/" style="font-family: "Times New Roman", serif; font-size: 12pt;">Epilepsy
Awareness Day at Disneyland</a><span style="font-family: "Times New Roman", serif; font-size: 12pt;"> 2018.</span><span style="font-family: "Times New Roman", serif; font-size: 12pt;">
</span><span style="font-family: "Times New Roman", serif; font-size: 12pt;">That’s what this event does to you – it inspires, educates, supports and
leaves you feeling all gooey inside!</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz2FA92Xk8i8u-uwHEmpMT501h_GALtRQgtX93qmEBDjVwP5B7VR15CPRz1TrgJzW6WzgyVOKpFLze3p82puHJy-qR-t0II6B2sKzQcZ6Dvsov5KvUSJLmnV7YsauNL28kLJndKxcKOODp/s1600/IMG_8322.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1437" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz2FA92Xk8i8u-uwHEmpMT501h_GALtRQgtX93qmEBDjVwP5B7VR15CPRz1TrgJzW6WzgyVOKpFLze3p82puHJy-qR-t0II6B2sKzQcZ6Dvsov5KvUSJLmnV7YsauNL28kLJndKxcKOODp/s320/IMG_8322.JPG" width="287" /></a></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<i><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">And that’s not just from the Mickey
Mouse Rice Krispy chocolatey goodness treat that I had to have on Day 1. <o:p></o:p></span></i></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">This
was the fourth year Richard and I took Robert to EADDL and the event gets
better each year. Friends and family attend with us which makes my heart oh so happy!
We meet new people who are affected by epilepsy in some way. Families travel from England, Australia,
Florida – you name it and I’ll bet that state or country was represented. (If
it wasn’t this year, it most likely will be in the future.)<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
know it is not always easy for families to travel to such an event but there was
not one person complaining. It is not easy to travel with someone who is
disabled and may need to go through an extra security screening at the airport.
Or someone who might have a seizure (or be worried about having one) on the
plane or at the event. Or someone who needs to organize a week’s worth of
medication.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I worry
that I won’t bring enough briefs or bed pads for Robert. I worry that all the excitement will cause
him to have seizure clusters (the last few years the event did cause seizure
clusters but this year he only had a few sporadic, minor seizures). I worry that it will rain (and we all know
Robert melts in the rain). <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
worry that I am not getting the absolute best deal on the flight or the hotel.
(I practically have a panic attack when making travel reservations because I am
so fearful I am going to pay more than I should!) <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRERD64nweK0zcOka2k1Wy67YoCTp2tQ7y_s77bDtAmw7D0SzTUEKhOBPZWW-71PuRdjCHsHWaefSdDEKaUMATYlG5qb1NcrXwMMtHlILxtNN86TNH0knY-sUhgcrPx6-Qbso6_HpsVHj9/s1600/IMG_8405.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRERD64nweK0zcOka2k1Wy67YoCTp2tQ7y_s77bDtAmw7D0SzTUEKhOBPZWW-71PuRdjCHsHWaefSdDEKaUMATYlG5qb1NcrXwMMtHlILxtNN86TNH0knY-sUhgcrPx6-Qbso6_HpsVHj9/s320/IMG_8405.JPG" width="320" /></a></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">My
worries do not stop me from going but they do prod me to be very, very organized
and prepared for any (and I mean any) contingency. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">What
if Robert ends up in the hospital and we have to stay a few extra days? No
problem: I bring a few extra days’ of medications (and have the nearest
pharmacy and hospital listed on my itinerary).
What if Robert leaks through his brief at night? No problem: I bring
enough pads to spread under and on top of him (thankfully, he’s a good sport
about it). What if pneumonia strikes
again? No problem: I packed his at-home supply of antibiotics and his inhaler
(and have his pulmonologist on my phone’s “favorites” list). <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">That’s
what these families do: prepare, prepare and prepare and then take a leap of
faith it will all work out. <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">And
it does.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg76lpvM2hgOg20uebL2GFITVpZcZwSpMYWqeYevEO1RCeItgGaq89AEYAMQh5PTxG_MO9R1tEe36wKIt2wSsx4HcoKfFmp47SL5o1EXHA4lcHNdg30wpq-pJ9dwwWs8NQCbmXjyihTCftB/s1600/IMG_8409.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg76lpvM2hgOg20uebL2GFITVpZcZwSpMYWqeYevEO1RCeItgGaq89AEYAMQh5PTxG_MO9R1tEe36wKIt2wSsx4HcoKfFmp47SL5o1EXHA4lcHNdg30wpq-pJ9dwwWs8NQCbmXjyihTCftB/s320/IMG_8409.JPG" width="320" /></a></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">These
families inspire me so much! I met many moms and dads with young kids with
epilepsy; a grandmother traveling with her grandkids who have epilepsy; a
single mom with her young adult son who has epilepsy; parents with adult
children with epilepsy; friends attending with a friend who has epilepsy. <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">We
get to meet other families who have taken this leap of faith to attend and it
leaves such a smile on our hearts that we cannot wait until next year. <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
even met one young lady who was at California Adventure by herself who had
epilepsy. She hadn’t heard about Epilepsy Awareness Day at Disneyland but
tapped me on the arm, pointing at my t-shirt and said, “I should be a part of
your group. I have . . .” Epilepsy? “Yes! I have epilepsy too.” <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">We
stopped to talk with her for a few minutes and she said she had been seizure
free since 7<sup>th</sup> grade and was now in college. She was delightful and
sweet and I told her about the event and suggested she attend next year. I
introduced her to Robert and she told me about the medication she was on that
allowed her to remain seizure-free. She suggested I talk to Robert’s doctor
about it and I thanked her for the information. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ2d4Cmy3Gw1vQP3_jotc3jQ1M-9zv0GgNyhR_IaL2rlr5DUGS-cCC_VleGYENUWX4nTXanpJ2KIETaE5w1GSrBMu6JSbQMTByrNcxldk1yql6N0HgkWHTWzvggyHIO6PeImqLxyhDjkha/s1600/IMG_8500.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1594" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ2d4Cmy3Gw1vQP3_jotc3jQ1M-9zv0GgNyhR_IaL2rlr5DUGS-cCC_VleGYENUWX4nTXanpJ2KIETaE5w1GSrBMu6JSbQMTByrNcxldk1yql6N0HgkWHTWzvggyHIO6PeImqLxyhDjkha/s320/IMG_8500.JPG" width="318" /></a></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">If
we hadn’t been wearing our Epilepsy Awareness Day shirts she may never have
known how many people were just like her.
Of course, I worried about her being at the park alone because she had
an innocence about her that I was afraid people may take advantage of. <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
recognized that innocence because Robert has it too. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Our
encounter was brief but she left an impression.
<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">That’s
what this event does too. <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">This
event brings people together and gets rid of the stigma that epilepsy still has
associated with it. <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">So
dust off your worries, start your planning and preparing and join us next year
at the annual Epilepsy Awareness Day at Disneyland and Educational Expo. <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Mark
your calendars for November 5, 6 and 7, 2018!! <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Hope
to see you there! <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I
better start my search for the best travel deals – it’s never too early! <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi74X2CvmrIbuO9tNlcV2Tz6ONv-AeBn49eVDWqHCHKzun20gsfSbbJd5h32asYF-4BgocBvR0rGkmEMc4F5cIMessGwaAPcRAyjsFkxy4yXIZIhEUM6cmUrv0UXIZEWKfACdpQz6ELNQ4F/s1600/IMG_8469.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi74X2CvmrIbuO9tNlcV2Tz6ONv-AeBn49eVDWqHCHKzun20gsfSbbJd5h32asYF-4BgocBvR0rGkmEMc4F5cIMessGwaAPcRAyjsFkxy4yXIZIhEUM6cmUrv0UXIZEWKfACdpQz6ELNQ4F/s320/IMG_8469.JPG" width="240" /></a></div>
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<div class="blogger-post-footer"><script src="http://connect.facebook.net/en_US/all.js#xfbml=1"></script><fb:like href="http://www.robertssister.com" layout="box_count" show_faces="false" width="450" font="verdana" colorscheme="dark"></fb:like></div>Trish Hughes Kreishttp://www.blogger.com/profile/04995070221130924508noreply@blogger.com1