Catching Up

It has been quite a while since I posted in this space.

I miss it.

I miss writing. I miss sharing my caregiving journey in the hopes of helping others. I miss the connections with those who grace me with their time reading my random thoughts and I miss the comments people share.

I miss getting these random thoughts out of my head. If you have ever struggled with a decision (and, frankly, who hasn’t) you most likely know it helps to write down your thoughts and (my personal favorite) a pros & cons list.

Writing helps sort through what is swirling in our brain and usually gives me some clarity.

So here I am. I am back! My plan is to not wait another two years to write another post.

Let’s get caught up.

My last post was about our decision to place Robert in a facility. That was in May of 2022.

We searched and searched for facilities for Robert. We used his Regional Center to help us find the right facility for him. We toured several and Robert was enthusiastic about each one.

We searched for almost two years and were rejected by every facility. “He has too many seizures.” “He is big and needs a lot of physical assistance and we have small staff.” “Our hallways are too small to accommodate any more people in wheelchairs.” “He requires too much care.”

In the middle of our search, Robert was hospitalized for aspiration pneumonia. I explained our situation to the nurses and they were very sympathetic. They suggested I discuss finding a facility with the discharge planner once Robert was ready to go home.

I did as they suggested and talked to the discharge planner. She was unable to find a facility for long-term care. I asked her to find a place for short-term rehab since he would need it after being hospitalized for ten days and she pushed back and asked if I would take him home after that. I told her if I could but that I would find out from them at that time if they could take him long-term. She said that is called “dumping” if I didn’t plan to take him home and she couldn’t risk her reputation with these facilities if I did that. At that point she refused to look for short-term rehab options and only came up with a couple of very low rated long-term options for me.

I was sick to my stomach. I would never abandon Robert but I knew I could no longer care for him. I had been trying to find a facility for him for almost two years! I was so angry that I just had him released back home – without the rehab he needed – so we were in a worse position than when we started.

Robert eventually got up to baseline with the help of outside PT and Richard and I using the lift during the worst of it.

Several months later, I needed to have a few minor surgeries so I found a Skilled Nursing Facility to keep him for a month while I had the surgeries and recovered without having to do the physical care Robert needed. I ended up needing more “respite” time because of infections after my MOHS surgeries and needing cataract surgery on my other eye. Robert ended up in the hospital with Covid that he contracted in the facility and was able to return to the facility once he recovered so he could have physical therapy to get stronger.

Robert then contracted RSV and was again hospitalized, recovered and returned to the facility again for rehab.

In the meantime, we welcomed our first grandson and have since welcomed another along with our granddaughter! 

One day while cleaning out the closet at Robert’s facility, I read the care notes left for the CNAs. “Two person assist.”

Oof.

I was doing Robert’s care at home by myself (although Richard helped as much as he could) so seeing “two person assist” in writing really hit me.

I told the facility I was unable to care for Robert in our home any longer. I had the hospital discharge nurse’s words in my head: this is “dumping.”

It is pretty typical to experience guilt after placing a loved one in a facility but to think you are now doing something called “dumping” increases that guilt exponentially.

I really wasn’t dumping him. I was doing what was best for all of us and had no other option.

Robert has been in the same facility now for almost a year and a half and gets very good care. Yes, I still have to stay on them for various issues but, to be honest, he is living his best life. Everyone loves him there (residents and staff alike) and he participates in all the activities. He’s the bingo king and even has former residents sending him gifts and cards. As he likes to say, he is doing “super, amazing, excellent and great, great, great!”

For almost every day of that year and a half I wondered if I did the right thing by moving Robert to the facility. Friends and family assured me it was for the best but I still had that nagging doubt. Seeing him so happy and well cared for helped. Being able to spend time with our new grandson without worrying about Robert was amazing. Going on vacation with Richard without the worry of finding respite care was a welcome relief.

Still, my doubts always found a way to creep in.

Until Richard had his cardiac arrest.

I now really truly know in my heart Robert is in the best place for him but that it is also the best situation for us.

While I will continue to write about Robert and spread awareness about epilepsy, I will also write about the experience with Richard’s cardiac arrest and his recovery in the hopes it will help other caregivers.

Thank you again for your time and your support!

Major Changes

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. 

We have made the difficult decision to find a facility for Robert. 

Ugh. See? That is a hard sentence to write! I hope it wasn’t too hard for you to read. 

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. 

How did we come to this decision? Why now? 

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.) 

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 are with him every day. 

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. 

Hmm. I hear all of them saying something but I can’t quite put my finger on it. 

Not surprisingly, it has been difficult for me and Richard to admit there has been such a dramatic decline. 

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. 

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.

In nine years, Robert has gone from mostly dressing himself with my supervision and encouragement to me bathing and dressing him. 

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. 

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. 

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. 

We try to stick to game shows.  

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 perseveration. You can see it in action here. 

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. 

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.). 

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.)

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. 

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. 

Back zipper onsie it is.  

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. 

There’s been a decline. I mean, a dramatic decline in movement, cognition, memory and impulse control. All of it. 

And he is not going to improve. This is his neurodegenerative process due to his numerous concussions, uncontrolled seizures, brain surgeries and medications. 

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. 

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.) 

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. 

I like to plan and prepare. I should be an honorary Boy Scout. 

On the other hand, we all joked that he would outlive us all because, well, he’s Robert. 

Funny, though, how these “plans” for the future don’t always follow the script in our heads. 

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. 

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.

I hope you understand our decision. 

The Deep Brain Stimulator for Epilepsy

It was a whirlwind of activity after making the decision in May to move forward with the Deep Brain Stimulator (DBS) for Robert. 

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. 

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.” 

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. 

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. 

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! 

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!). 

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. A few tears of frustration leaked out. 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. 

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. 

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. 

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 implant. 

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. 

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.) 

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. 

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. 

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. 

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. 

DBS activation was on the books! 

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. 

Looking for Answers

Something is going on with Robert that I haven’t yet figured out. 

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. 

In the last eleven years we have gone down a lot of steps. 

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). 

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).  

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. 

When his seizures are coming he has a high pulse rate and he’s confused. 

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). 

I love puzzles but this can get complicated. 

Robert started having worsening mobility and confusion about a month ago. He is acting just like he always does when he is getting sick. 

However, his vitals are fine. His blood pressure is lower than normal but I attributed that to his overall weakness. 

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. 

He has had more frequent aspirations and choking episodes but he would run a fever if that was turning into pneumonia. 

He had seizures one day during all this but not since. 

There is something wrong but it’s not his usual three issues. 

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! 

Catching the urine was a whole other issue but I finally got some. Just a little but enough to run the test. 

That came back normal. 

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.”

No. That’s not what I want to hear. I want to find a problem that we can fix. 

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. 

In the meantime, I set Robert up with a new GP. 

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! 

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. 

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.) 

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?! 

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. 

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. 

The puzzle of Robert continues but so does our persistence in finding answers so we can slow the inevitable steps down that darn staircase. 

Caregiving Decisions: All Day, Every Day

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!)

The pandemic has added even more decisions for caregivers to make.

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.

I decided it was safest for Robert to keep him home.

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!”

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.

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.

Move your right foot.

Move your left foot.

Keep your head up.

Push the walker.

Move your right foot.

Move your left foot.

Keep your head up.

Push the walker.

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.

I talked to his movement specialist and she thought it was a progression of his Parkinsonism. She felt going back to PT might help.

I wasn’t convinced it would be safe to take him so mulled it over a while longer.

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).

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.

I decided it was time to get him back to PT.

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.

(Guilt is so often an unwelcome companion of decision-making.)

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.

I have to decide between mobility and an increase in seizures.

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!).

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.

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.

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.)

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.

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!

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!).

Making Decisions: A Lesson From Dad

The topic of "decisions" has been on my mind lately and I now realize why. 

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.

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!

The surgery requires a several day stay in the doggie ICU after surgery and, quite possibly,

medication for life.

I honestly don't know that I want to put my little sensitive guy through all that.

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.

We all have to make our own decisions.

We haven't decided about Taz yet but I am enjoying each day with him while I mull over the options.

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!

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.

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).

Of one thing I am sure and Rachel reminded me of this today: I was his favorite daughter.

(As his only daughter, it was a fun little running joke we had my entire life.)

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.

Miss you, Dad. Don't cause too much trouble up there. 

Tips to Help Caregivers Manage during this Pandemic

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.

Life is very, very different.

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.

Trish, Robert and Richard

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.

Stay-at-home Orders. The Stay-at-Home orders are critical to keep people safe. Social distancing works. However, caregivers who live with their loved one know it is impossible to keep a distance while also caring for our loved one.

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.

           

            Self-Care Tip. 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.

  

Loss of Income. 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.

While this is a terribly depressing time it is also time for action. Apply for unemployment as soon as possible. The CARES Act 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 Meals on Wheels for help with food. Reach out to creditors and landlords or mortgage companies to see if they can defer payments for a few months.

            Self-Care Tip. 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.

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.

Where are the supplies?! 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:

·         Call your health care professional. 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.

·         Create online orders in the middle of the night. A friend gave me this tip and said product availability and available delivery times were better in the middle of the night.

·         Take advantage of senior hours. 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! 

·         Ask friends and neighbors. 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.

·         Check non-traditional suppliers. 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!

·         Make your own mask/face covering. Homemade masks and face coverings are springing up. There are a few sites to help you make your own but this one has directions for both a no-sew version and one that requires sewing.

Self-Care Tip. 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.

Lockdown Orders. 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.

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.

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.

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.

            Self-Care Tip. 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.

Caregiving is more challenging than ever right now but we will get through this.

Stay safe and stay well. Take care.

Trish

Trish Hughes Kreis is co-author of the 365 Caregiving Tips: Practical Tips from Everyday Caregivers 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. 

The Caregiving Snowball

It’s hard to tell when you’re in what I call the caregiving snowball.

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.  The length of this period is as varied as there are caregiving situations.  Some skip it altogether and go straight to the snowball. 

The crew happy to be home

The snowball is when things get crazy. 

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.

The days of routine look pretty good right about now. 

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.

We have to celebrate with cake!

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.

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.

The snowball to me means longer recovery times and a steady, permanent decline in Robert’s overall health and mobility.

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.

Freedom!

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!

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.

Sleeping but happy

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!)

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.

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.

My co-pilot

Caregivers: We Can Do Hard Things (but Don’t Have to All the Time)

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!

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.

In other words, it is hard work. But I CAN DO HARD THINGS!

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.

Caregiving is like that too.

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.

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.”

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.) 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.  

So, yes, caregivers CAN DO HARD THINGS and we do them every damn day!

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.

I can do hard things. I can work smarter. Sometimes, though, I (and probably millions of other caregivers like me) 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.

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.

I CAN DO HARD THINGS but I don’t have to do them all the time.

And neither do you.

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.

Then go back to doing those hard things that are inevitable but do them with renewed energy and peace.

2018: Goodbye Awful, Hello Gratitude

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.”

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. 

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).  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.  Oh, and the usual seizure clusters (at least twice a month) which almost seem like the least of the problems he had in 2018. 

Richard underwent four skin grafts on his never-healing wound and saw each one fail.  Even after spending many days in the hospital on aggressive antibiotics and wound care. 

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. 

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.

At first glance, yes, 2018 was nothing short of awful and stressful and, most certainly, difficult. 

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.  And that was the first month of the year – before the weight of the year really bore down on us!  

I had no idea we were just getting started with our “epic” year. 

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!  I was so focused on how stressful it was that I had minimized the beauty of it. 

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!   

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!  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”).  Bonus: I got to see the ocean!!

Richard and I took a trip to Alaska – just the two of us!  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!  The trip fueled my soul and I could feel the stress washing away. 

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.  Two weddings in 2018!

Our annual trip to Disneyland for Epilepsy Awareness Day brought a reunion of sorts with my co-authors.  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. 

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.  (I’m actually not sure I would have pushed myself to attend if I hadn’t had a stroke.)  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)! 

And I don’t want to jinx anything but my face and hand numbness seems to be lessoning in intensity!  With any luck, I am hoping it will go away completely. 

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.”  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.)

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. 

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.  

I’m all for lessons and challenges and don’t want to be selfish but a less eventful year would be a welcome relief. 

Here’s wishing all of you a happy, healthy and hopeful year!  May 2019 be excellent for all of us! 

Respite: Let’s Do This Again

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.” 

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.

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. 

Caregiving is one tough job and we need to be as physically and mental fit as possible to do it.  Respite is hard to come by and shouldn’t be as tough to get as it is but it is definitely worth fighting for. 

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.  The trip is in a couple of parts so your eyes don’t glaze over with our vacation pictures.  You can read part one here. 

Day 6 (Tuesday).  We are heading into Glacier Bay today!  Richard seemed to sleep okay – only waking up a couple of times.  I didn’t hear him at all but woke up at 5:00 because somehow his watch alarm went off.  Grr.  Oh well, I can always go back to sleep.  I was wide awake for some reason so actually didn’t go back to sleep.  I felt fairly well rested after seven and a half hours but woke up a little grumpy.  I don’t know what if it was because of the alarm or because I miss our regular routine or something in the air.  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).  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.) 

I went to get a caramel latte for Richard and a decaf mocha for me after my walk.  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.  On my way back to the room, a woman got into the elevator and said what a miserable day it was. Oh no!  What a shame!  I asked what had happened (I am thinking something terrible happened to her this morning: getting bad news, falling, something).  “It’s raining.” 

Ahh.  I mumbled something about it not coming down too hard as I exited the elevator.  Apparently, I wasn’t the only one who woke up a little cranky.  Maybe it was something in the air. 

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.  We had been frequenting the buffet every day but wanted to try something a little different.  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!)  We should be entering Glacier Bay just about when we are done with the massages. 

The Universe is looking out for me because my massage therapist used to be a physical therapist who worked with stroke victims.  We talked about my stroke and she gave me hope that my numbness would actually go away (yes, I still have numbness).  She said in her experience it takes six months to a year to go away.  That is similar to what my neurologist had said (“weeks to a year to never”) so it was nice to have that validated again.

Of course, she tried to sell me some products after the session but they all do that and I politely declined.  She did talk me into getting another massage later in the week but I’m not sure if I will keep the appointment.  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!   We’ll see. 

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. 

We had our second anniversary dinner at the dining room.  This is supposed to be our 20^th Anniversary cruise but we actually celebrate 21 years next week (we couldn’t come last year).  We even got Happy Anniversary balloons on our room door, a glass of champagne at the dinner and a special tiramisu cake.  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!  It was very special. 

Day 7 (Wednesday).  Today we docked in Sitka!  I slept seven and a half hours and woke up on my own just before 5:00 a.m.  Richard’s alarm went off again at 5:00 – he said he silenced it so we’re not sure what is going on. 

Richard slept okay.  He was up a couple of times but not in excruciating pain.  Today will be a day in town so there will be more walking again.  He plans to bring his scooter to help alleviate some pressure on his leg.  I hope that helps.

Sitka was a spectacular day!  Apparently, it rains most of the year yet our day was sunny and 65 degrees.  It was fabulous!  It is such a beautiful area, too. We hadn’t pre-purchased any excursions but bought one once we were in town.  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.  I miss our FroYo runs with Rachel!  I hope our little local shop hasn’t gone out of business since we’ve been gone – we give them a LOT of business. 

Our tours were a trip to the Fortress of the Bear and the Raptor Center and driven by a very nice (and funny) man named Lionel.  We saw more bears but these were in a rescue center that takes care of bear cubs after their moms were killed.  The Raptor Center showed us more bald eagles than I will ever see again!  Beautiful creatures.  This center also rescues injured or starving birds and releases them back into the wild once they’re fixed and in good shape. 

We lunched on fantastic chowder before heading back to the boat.  Richard was hurting and very tired so we stayed in the room for the night.  He suggested room service which was a good idea.  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.  Richard had to order dessert (he had to!) but I could only choke down a bite!  I am not usually too full for dessert so that’s saying something!

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!  I couldn’t get a picture fast enough before the tail disappeared into the sea but, oh my! 

We went to sleep around 10:00.

Day 8 (Thursday).  I woke up around 5:30 and Richard was asleep, sitting on the couch.  His leg must have been hurting through the night.  I dreamt about Taz – more of a reality dream than anything.  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.  Yep, that’s my boy!

We do miss our dogs!!

I went for my daily two mile walk around the ship and watched as we docked at our next port, Ketchikan.  I tried to get a mocha but the café wasn’t open yet.  I returned to the room, showered and we got ready to disembark.  It will just be a short time in town before the ship heads out again toward Victoria. 

We had coffee and bagels at a local shop and then walked around the town before our tour.  We made our way to the Visitor’s Center so we could check in for the tour.  We were super early so Richard sat to rest his leg and I walked around the shops a bit more.  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.  He was an interesting character and a seemingly gentle soul - very kind.  Richard and I talked to him after the presentation and we learned more about him.  Justin has had three strokes (two small and one more devastating).  He couldn’t walk but now has regained his mobility and can still carve.  He said the medical care in Ketchikan was terrible but he finally got a referral to a doctor in Seattle.  He said he has a couple of tumors in his brain and his sinuses and he doesn’t know what all will happen.  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.  I left even more grateful to live in an area that has good healthcare. 

Our next stop: salmon!  We saw salmon swimming upstream in a beautiful stream surrounded by woods (and a bunch of ship people, but that’s okay).

Our next stop was another stream under a bridge where we hoped to see a bear.  Lucky for us, there actually was a black bear looking for fish.  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. 

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.  Good entrepreneurship!

Our last stop on the tour was a totem pole area which was interesting and rich in history.  Apparently, Abe Lincoln’s Secretary of State owes these people a huge debt and they have not forgotten that!  It has been great learning so much about Alaska!  Not to show too much of my ignorance but I didn’t realize there were rain forests in Alaska.

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! 

We were back to the ship around 12:30 – just before the deadline!  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.  Luckily, I didn’t miss the deadline to be back on the boat or those would have been some costly sour gummy worms!

Today Richard is going to play bingo while I get another massage.  I do feel very indulgent but I have to stock up and refill my caregiver bucket!  Plus, I’m hoping he wins at bingo so I won’t feel so bad spending the money. 

I keep thinking about Justin, the carver.  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.  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.  What happens after surgery for them?  What about anyone with mobility issues?  To think people have to travel to Seattle for specialty healthcare is quite unnerving.  Not everyone would be able to do that.

Day 9 (Friday).  Victoria was our Canadian stop and we only have a few short evening hours.  Before leaving on our trip, I found a cute restaurant near the pier and thought we could have yet another anniversary dinner!  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.  The dinner (and, of course, desserts!) were fabulous at Il Covo Trattoria. I was determined to wear heels for this dinner so got a little dressed up and donned a pair of boots. 

We wanted to walk around downtown Victoria after dinner and were told it was “just around the corner.”  Suure.  Two miles later, we finally saw it in the distance!  I left Richard on a bench and walked up a hill to visit some touristy shops and got a bargain on some sweatshirts.  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.  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.  Victoria might be better seen in the daytime with more hours to spend and maybe some sensible shoes. 

The ship will dock in Seattle by the time we wake up in the morning.  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).   

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).  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). 

We are so, so appreciative and, maybe, just a little greedy because I would love to do something like this again next year. 

Something for me to remember:  Respite isn’t just good for the caregiver but also for our loved one.  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. 

In the meantime, I am going to do my best to not let this after-respite glow disappear any time soon.