The Vaccine with a Side of Guilt

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!) 

I am prone to feeling guilty about everything anyway but this might be something others can relate to so will risk the judging. 

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. 

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. 

We both got our shots. (And Robert got a chocolate shake afterwards for being such a good sport about it.)

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).  

So, yeah, guilt. 

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. 

And I can stop feeling guilty! 

A Day with a Caregiver: Updated for the #Blog4Care Carnival

Caring Across Generations is publishing a #Blog4Care Carnival at the end of March and I am thrilled to help them with their goal of showing what caregiving is like from all different perspectives.  This post opened my own eyes about a caregiving day from the perspective of a working caregiver. I am not special – I am one of millions of working caregivers who have days similar to this.

On this particular day, I was juggling taking Robert to a dental appointment and working from home.  

Richard and I recently participated in a project created by Denise Brown, founder of the non-profit CareGiving.com, Chris MacLellan, founder of ThePurpleJacket.com, and Rajiv Mehta, founder of Unfrazzle.

One of my favorite moments

It is easy enough to do: keep track of your caregiving day on a log provided by Denise and Raj.  Denise, Chris and Raj created the log and are asking caregivers to participate (there’s still time to do so – visit here for more information.) 

Before completing the log, I thought my caregiving day consisted of getting Robert ready for Day Program, laundry, making dinner, fostering a bond between Robert and Taz and keeping all of his medications straight (and in stock).  I wondered why I didn’t have time to write or why a trip to CVS for incontinence supplies seemed like a real treat. 

I wondered why I couldn’t write at 8:00 p.m. when I had a whole hour to wait until Robert’s last medication dose.  Instead, I was exhausted and wanted nothing more than to lie in bed and watch a brainless television show with my dogs and husband or play Words with Friends.

Okay, sometimes I plop into bed as early as 7:30 and, yes, my 20 year-old self is mocking me right now. Heck, I’m pretty sure my 40 year-old self would be appalled. 

I thought I must be doing something wrong; I know I have it easy compared to many other caregivers.  Maybe I need to be more organized. Maybe I need more checklists (as many of you know - my solution for everything).

The day I kept the log, I thought it was an atypical day.  After all, Robert wasn’t going to Day Program because of a dentist appointment and I was working from home after the appointment instead of going to the office.

Here’s an excerpt of my log (the actual log has more information to keep track of and also tracks an entire day):  

Time:               Activity:

5:30 a.m.:        Wake up; discuss Richard's night and how he slept;

5:40 a.m.:        Prepare water (add thickener); dispense meds; 

                       add antibiotic;

5:45 a.m.:        Turn off oxygen & humidifier; ask Robert to get up;

5:46 a.m.:        Put Robert’s word search book in his walker basket; 

                       put glasses & pens & calendar on kitchen table;

5:47 a.m.:        Notice Robert is having a seizure while still in bed; 

                       lasts 10 seconds; watch & wait;

5:47 a.m.:        Help Robert out of bed; watch him walk to the bathroom;

5:49 a.m.:        Remove wet bed pads and put in garbage;

5:51 a.m.:        Help Robert remove his shirt, pants, briefs; 

                       put wet clothes in washer and briefs in garbage; 

                       watch Robert sit on toilet;

                       remind him to use urinal guard; 

5:56 a.m.:        Remove wet sheet & blankets from bed; put in laundry room; 

                        load washer;

6:00 a.m.:        Ask Robert how he's doing in bathroom;

6:00 a.m.:        Write down earlier seizure in his seizure log;

6:00 a.m.:        Fold blanket that isn't wet; put away in closet; put foot & head wedges into garage;

6:10 a.m.:        See Robert standing up wiping himself; I tell him to throw away the TP and ask if he needs his rear-end wiped. He says he still needs to wipe his penis; I ask him to throw away the toilet paper; we have a discussion about what he needs and I ask him to sit down to wipe. He finishes wiping;

6:15 a.m.:        Warm up water for bath; lay towels on floor; put down bowl;

6:17 a.m.:        Wet washcloth and hand to Robert; he washes his face; I wash his hair; rinse his hair; get excess water off hair and he dries his face; prepare wet cloth for him to wash whole body; give to him;

6:25 a.m.:        Add thickener to water; give Robert medication;

6:26 a.m.:        Ask Robert to stand so I can wash his back; he has to go to the bathroom again; I hand him urinal guard;

6:28 a.m.:        Take out garbage;

6:35 a.m.:        Check on Robert; ask if he's done says he has to be wiped but is holding toilet paper; told him to throw that away; he continues to sit and then begins to wipe his eye because he says it's bothering him. I wipe his eye with a washcloth;

6:37 a.m.:        Ask Robert to stand so I can wash his back; I wash and then dry his back; spray body spray on him; give direction to put hand on counter and railing to sit down;

6:38 a.m.:        Give Robert his briefs, shoes and socks and insert pad into 

                        briefs;

6:39 a.m.:        Remove fitted sheet from mattress pad; roll up mattress pad and put out in the garage; put sheet in washer; put away sofa bed; check on Robert's progress dressing;

6:45 a.m.:        Help Robert put his briefs on;

6:46 a.m.:        Prepare jeans (put handkerchief in pocket; washcloth in other pocket; wallet, comb & fingernail clippers in pockets); add belt;

6:47 a.m.:        Check on Robert's progress; give him the jeans; help Robert 

                       put on his socks;

6:50 a.m.:        Give Robert choice of shirts (show him two, he picks one);

6:55 a.m.:        Check on Robert's progress; remind him about 

                       dentist appointment this morning;

6:56 a.m.:        Add thickener to water for next med dose; give Robert nasal spray; help him put on his shoes (I asked if he needed help, he said yes); offer to help with shirt and he declined offer;

7:05 a.m.:        Go upstairs to shower; Richard takes over watching Robert; I check/answer work emails;

7:35 a.m.:        Give Robert his medication;

7:36 a.m.:        Discuss changing pain doctors with Richard and the referral form I got for new doc;

7:40 a.m.:        Remind Robert he has a dentist appointment and needs to finish up breakfast; seems groggy and slurring words, falling asleep; seems "post-seizure" like;

7:45 a.m.:        Finish getting ready for the day (me);

8:00 a.m.:        Ask Robert if he wants to shave and brush his hair first and then brush his teeth. He says he does; I remind him of his dentist appointment and give him 10 minutes to shave and comb his hair;

8:05 a.m.:        Drink coffee that Richard made; check personal emails 

                       and texts;

8:10 a.m.:        Brush Robert's teeth; explain what to expect at the dentist;

8:20 a.m.:        Transfer clothes from washer to dryer; start another load in 

                       washer;

8:25 a.m.:        Put Robert's coat on; ask him to sit down for a minute; get his meds in the event of prolonged seizure while out;

8:30 a.m.:        Take Robert to the car; put him safely in; 

                        load walker in trunk;

8:40 a.m.:        Robert gets mad at me for rolling down the window when I am crossing a busy street. I explain to him the driver needs to do what they need to do for safety even if the passenger doesn't like it;

8:55 a.m.:        Arrive at dentist; walk Robert in and sit him in a lobby chair; ask him to keep his helmet on since they will call him back shortly;

9:00 a.m.:        Go out to the car to get the "car bag" in case of an accident;

9:05 a.m.:        Robert is called back; help him stand up; walk him back to the dental chair; put bed pad on chair in case of an accident; help him into chair; fold up walker, etc. and get out of the way;

9:10 a.m.;        Sit with Robert while he's getting work done; check/answer work emails as well as personal emails/texts;

10:20 a.m.:      Robert is finished; walk him to lobby and set him down;

                       I go pay;

10:30 a.m.:      Robert has accident in lobby (crap - no pad!); I take him to bathroom to change and clean up;

10:45 a.m.:      Apologize to dentist office and offer to pay for new chair or 

                       cleaning of chair;

10:46 a.m.:      Put Robert into car; put walker into trunk; look for dumpster for wet briefs/pads - 

                       no luck; put in the trunk and leave;

11:10 a.m.:      Stop for coffee!

11:15 a.m.:      At home - get Robert out of the car; his walker basket broke and I had to explain that to Robert since he was asking why it wasn't attached to his walker; walk him into the house;

11:20 a.m.:      Help Robert remove jacket; repack his car bag; 

                       start laundry with his wet clothes;

11:25 a.m.:      Notice Robert is pressing on himself which is a sign he needs to use the bathroom; I ask him if he needs to go to the bathroom and he agrees he does; help him up and into bathroom;

11:30 a.m.:      Put on gloves and take off one of the two briefs he's wearing because it is wet; replace the pad in the brief;

11:35 a.m.:      Robert is finished; wipe off bottom and hand him sanitizer wipe to wipe hands; take out the trash;

11:40 a.m.:      Take vitals because Robert is moving slow and seems groggy;

11:45 a.m.:      Check on Robert since he is shaving and brushing his hair;

11:50 a.m.:      Log onto computer - check personal emails; check news;

11:55 a.m.:      Help Robert out of bathroom; get him settled on couch; 

                       start TV show for him;

11:57 a.m.:      Fold bedding from dryer;

And that’s the morning . . .

After keeping track of all the activities in a caregiving day, I came to several realizations:

1. Tasks may only take a minute or two but, boy, do they add up and they are never-ending;
2. There is no typical day in caregiving.
3. No wonder I am exhausted!

Every day in caregiving is different. Sure, there might be some of the same tasks (like laundry and helping Robert clean up in the bathroom and keeping his razor charged) but every day is different.  Some days have doctor’s appointments, some days Robert is moving extra slow and some days he is returning home excitedly telling us about his Valentine’s Day haul of cards (“They’re all from girls!  They looove me!”).

Richard and I had a video chat with Denise and Raj and discussed doing the log and the realizations we came to after keeping track of the day.  Our conversation is below.

While talking with Denise and Raj, I realized that it doesn’t make sense to compare our day to someone else’s day.  What might be easy for someone else might not be easy for me. While I might have to do something one day, I might not have to another day.  My morning log seems like a lot to some and pretty easy to others.  There are days that the tasks really aren’t that much.

Every day is different.  Every caregiving situation is different, yet we can all learn from each other because much of what we feel is the same.

Doing the Caregiving Day log also made me realize I am going to be a little kinder to myself for not getting more done or writing more.  I am also going to cherish the times that I am actually able to find the time to write and am going to appreciate what I am able to get done.  I need to remind myself that we are all doing the very best we can.

Caregiving is in the details but also about the moments. There was a moment in the afternoon that Robert made me laugh and later in the day I was able to spend a few minutes watching Family Feud with him and laughed some more. Those are the moments I want to cherish when I look back on this time caring for Robert.

Tell me about your caregiving day in the comment section and, please, contact Denise to complete the Caregiving Day Log. 

What Epilepsy Means to Me: Teresa Stallone

We are kicking off this week of Epilepsy Awareness Month with Teresa who has epilepsy and who is also a caregiver to her mom.  Teresa talks about the awful side-effects of some anti-seizure medication and how that has affected her emotionally and physically.  It was a pleasure getting to know Teresa who is an artist, caregiver, photographer, advocate and Twitter buddy (I told you I was addicted!).  Teresa also has epilepsy but, as she will tell you, it does not define her.  Please meet Teresa:
 

Teresa and her mom

Robert’s Sister:   When were you or your loved one first diagnosed with epilepsy?

 

I was diagnosed with Primary Complex Partial and Secondary Generalized Seizures almost 15 years ago.

 

My mom was diagnosed in March of 2011 with seizures that seem to be originated in the temporal lobe. She is undergoing tests to determine whether her seizures are epileptic in nature or if it is a seizure disorder.

 

Robert’s Sister:  How did you feel when you and then your mom were diagnosed?

 

I was young when first diagnosed. I was surprised; never suspecting to hear “You have seizures.” I did not know enough to understand the weight of the diagnosis.  I soon learned all of the frustrations and disappointments that can arise when seizure control is not gained, in addition to how it can interfere with daily activities.

 

Fast forward almost 15 years later and my mother is diagnosed with seizures unexpectedly. My mom was hospitalized after she went missing for eight hours. She was found safely and admitted into the hospital. It was learned that in addition to a medication side effect, she was having seizures that caused her not to know where she was or what she was doing. When the diagnosis came, I was devastated. I know all too well what comes with the diagnosis.

 

Robert’s Sister:  Did your family treat you or your mom differently after the diagnosis?  If so, how?   

 

When my mom was better than she is now, she had a tendency to be overprotective even when I was stable. On the other hand, she did not realize the importance of treatment and planning protocols concerning the stages of a seizure, triggers, the affect they have on cognition, emotional feelings, stamina and endurance, in addition to the periods of stabilization. 

 

I experienced disbelief of seizures from other family members, some of which acted as if they did not know even when I held conversations with them about it and/or medications. Seizures were witnessed and then ignored. It was thought that if it was “over” after five minutes of “rest,” I was fine. Whether it is denial or just not wanting to deal with it, I don’t know. The majority of what I have received is being told what “so and so with epilepsy” can do and/or does regardless of medical advisement. I am compared to this one or that one. Everyone is different as is every case. What is not different is we all deserve support through care and concern.  There is concern, yet it manifests in fear and misunderstanding.

 

The greatest support I received was from my cousin’s son. He was a young child when I was diagnosed. He understood what my triggers and limitations were, in addition to knowing signs, symptoms and what to do when I had a seizure. He understood what an adult denied. He is 17-years-old now. When I am around him and ask if he still remembers what to do, he refreshes it by informing me, which leaves me feeling safe knowing I have someone who has my back so to speak. I am forever grateful to him.

 

The family is concerned, yet not involved in my mother’s treatment and care. They do not wish harm to her.

 

Robert’s Sister:  Did the kids at school treat you differently because you had epilepsy? 

 

No. I was not treated differently when I began college. I am in a one-of-a-kind that supports individuals with waxing and waning chronic illnesses. I have been very fortunate. All of my classmates, who are adults, understand and lend support which makes me feel more comfortable. I know I will be cared for if I do have a seizure.

 

Robert’s Sister:  What treatments have you or your mom tried?   What has worked?  What hasn’t worked? 

 

Primarily, medication therapy has been used. Some medications have hurt me more than they helped. Therefore, they were removed from my treatment regimen.  I have also utilized neurological rehabilitation, neuropsychological testing and treatment, psychotherapy, cognitive behavioral therapy (CBT), meditation/relaxation, support groups, vitamins and supplements and diet changes have been used. Avoiding triggers and minimizing stress to the best of my ability helps tremendously as well. They all have worked in their own ways. Another medical condition overlaps, causing seizures to breakthrough. This is currently being investigated to find a new avenue to take to alleviate the issue.

 

My mother is currently undergoing further testing. A medication is being slowly introduced to her regimen. When it is at a clinical dosage, my mom will then begin to wean from her current medication. Otherwise, she is advised to use stress management techniques and take supplements.

 

Robert’s Sister:  Do you think the medications affect how you or your mom feel?

 

Medications affect cognition, which leaves me either on another planet or what many call “brain fog.” I was fortunate enough to go through neurological rehabilitation to learn a new way of learning which constantly needs modification. I believe medications do affect behavior and feelings. Seizures do the same thing. The addition of medication side-effects increases frustration, irritability, moodiness, anxiety and depression.

 

My mother has experienced changes to her feelings since being on anticonvulsants. Right now, it is believed that there may be psychotic symptoms triggered by the medication. Her moodiness, anxiety and depression have worsened since she has been taking the medication.

 

Robert’s Sister:  Have you or your mom done any advocacy work (individually or with an organization) or participated in any research studies?  What made you want to be involved?

 

I have advocated individually for myself and mother. In addition, I have done so with a program, called The Chronic Illness Initiative (CII) at DePaul University The School for New Learning. CII is in transitioning into the Center for Students with Disabilities at the university. I led a student group in advocacy for all of our related illnesses, including my seizure disorder relating to higher education, employment, socially, and by speaking at annual Symposiums and in the press. I have done so with my advisors, instructors, professors, physicians and community at large. I wish to do so with an organization, such as The Epilepsy Foundation. I have never participated in any clinical research studies other than completing market research interviews. 

 

Advocacy is one of my passions. I have done it because I believe empowerment leads to liberation within, which can pave way for much positivity and strength. I believe awareness is necessary to break stigmas and to gain more community and public support. Organization and individuals within a community need more assistance. Awareness brings attention to their needs, which can be integrated with community support and/or continuing research for a better tomorrow living with epilepsy. Most of all, I want to do it to give individuals a voice. Everyone needs an extra voice to speak on their behalf. I know I need one besides my own.

 

My mother has not advocated or participated in any clinical research studies related to epilepsy.

 

Robert’s Sister:   How has epilepsy affected your life?

 

Epilepsy has affected my life is many ways. Transportation is a great difficulty for me. I am unable to drive and living on a fixed income does not help with costs. I am not able to utilize public transportation when I am not stable as it can trigger a seizure and severe vertigo.

 

Seizures and the effect of them have interfered with attempts at maintaining gainful employment, missed deadlines, missed appointments, missed social events, not being able to be on a computer long, reading comprehension slowing, higher education classes, caregiving for my grandmother and now, my mother. Medication side-effects have caused havoc in my life ranging from weight gain to a suicide attempt (I was quickly weaned from that medication!).  

 

It has affected my social life as well. Places I can go are limited as a result, which keeps me from one of my passions: supporting the local music scene! I have experienced those afraid I will have a seizure and have been treated differently. I use caution and plan as best as I can. I also educate whenever I can. However, everyone has their own perception. Even when I am stable and have not seized in months, I still experience others’ fears of it. Some relationships have changed or diminished as a result, in addition to the process of dealing with all that comes with epilepsy. When I have support, I am better off emotionally. The emotionality that comes with the disease is overwhelming at times. It peaks and valleys with the progression and stabilization of seizures. I also have the tendency not to open myself up to romantic relationships in fear of rejection. I am not epilepsy. Unfortunately, I have experienced many who think I am.

 

The main issue I continue to deal with today is severe periodontal disease and severe decayed, eroded and broken teeth. I only have 10 teeth left with no partials that fit. A great cause of the decline in my oral health was my medication. I had to take a custom-compounded version, which was pure chemical. Within two years, it affected my oral health. Due to lack of finances and public assistance, the work could not be completed. Now I am in a situation that can result in death. I have an infection which is treated with ongoing antibiotics. When my primary physician can no longer prescribe it, I will not have any. It can lead to my death. I am experiencing major health consequences as a result, including more breakthrough seizures thanks to medication to ease relentless pain.

 

I believe I am capable. My stamina and endurance is on a differing schedule than the modern world. I become frustrated with it. I do my best to go with the flow. I know I have it in me. I wish I had more support. However, I cherish what I do have and rely on the support I do have, in addition to my faith to gain strength when I have days I want to give up. My determination is something to reckon with.     

 

Robert’s Sister:  What is your favorite memory? 

 

Relating to epilepsy, my favorite memory is having it acknowledged and treated like I was no different than the norm. However, precaution was set in place. When I did seize, I was in good hands. One good thing that has resulted is awareness and the ability to share my story with others to help another relate, feel better, be inspired or motivated and learn. 

 

Robert’s Sister:  Do you ever wish you didn’t have epilepsy?

 

There are many times I wish I did not have epilepsy. I would not have to be concerned about losing insurance benefits or medication which keeps me functioning; loss of my ability of caring for myself; a need for more assistance; having yet another seizure; injuring myself; dropping in public while alone and so on. The main issue is this: I could drive if I did not have epilepsy!

 

I wish my mother did not have seizures too. I do not think anyone wants another to have an illness. She is still grieving the loss of her driving privileges.

 

Robert’s Sister:  What do you want people to know about epilepsy?

 

Epilepsy is a very real condition. There are many different types and causes of seizures that are epileptic and those that are not. Regardless of the cause, a seizure is a seizure. It affects the brain the same way. A recovery period comes after a seizure. It varies from person to person. Do not compare one epileptic to another. An individual may not remember the episode or how they behaved. They cannot help it. It is part of the disease. Once the seizure recovery period ends, the person you love will return to their norm.

 

Robert’s Sister:  Is there anything else you want to say?

 

I kindly suggest being supportive when concerned about a family member, friend, co-worker and/or neighbor. Epilepsy is often misunderstood and carries many myths. If you are not sure, please lend an ear to listen and learn. Ask the person you love questions. If they do not know, assist them and yourself by seeking information together or go with to a doctor visit. Keep in mind, each case is not the same. Just because Person A can drive, it does not mean Person B can. Epilepsy may be challenging at times; however, many live productive and successful lives. It just may not be on the “norm’s” timetable sometimes. Each bit of your understanding and support can assist in one doing so. Get involved in a positive way!

 

Robert’s Sister:  Please tell us how we can contact any organizations you support or if you have a website or busine

 

I support the following organizations:

 

The Epilepsy Foundation of Greater Chicago;

Thresholds (Emotional/Mental Needs);

Chronic Babe (CI Support);

Rest Ministries (Christian CI Support;

www.caregiving.com (Caregiver Support);

I am working on my starting own blog. Until then, I have a photography website where my photographs can be purchased at www.artistrising.com/galleries/tespics. My work is also featured on www.art.com and www.allposters.com. Search “Teresa Stallone” and my name will appear leading one to my work for purchase.

Robert’s Sister:  Thank you, Teresa, for sharing your epilepsy story and your mom's too!

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net.    

What Epilepsy Means to Me: Linda Andersen, Jason’s Mom

Today we meet Linda, a mom living in North Dakota with her husband and her 43 year old son, Jason, who has had uncontrolled epilepsy since he was 2 ½ years old.  Linda and I crossed paths last year during epilepsy awareness month and she shared her story with Robert’s Sister then.  Linda and I immediately had a connection because her Jason and my brother, Robert, seem so similar.  Close in age, same uncontrolled seizures, same positive attitude. Meet Robert’s doppelganger:

Jason chooses Happy

Robert’s Sister:    When was your loved one first diagnosed?  Tell us about the process of getting the diagnosis. 

 

Jason was diagnosed in 1971.   He was 2 1/2 years old.  We live in a very rural community in North Dakota so getting a diagnosis was long and difficult.  We started at the ER at the local hospital, we were then sent to the nearest neurologist (who was 180 miles away) for testing and examination.  Over the course of several years, we went to the Mayo Clinic four times, the University of Wisconsin, Gillette Children’s Hospital in Minnesota and the University of Minnesota.  It was a long, difficult journey, not just mile-wise, but mentally and physically.  We now have a neurologist in South Dakota and at The Epilepsy Group in Minneapolis, Minnesota.   

 

Robert’s Sister:  How did you feel when Jason was first diagnosed with epilepsy?

 

Scared, confused, angry, sad and helpless but hoping somehow it would all work itself out in the end with an answer as to why and, of course, with seizure control. After 41 years, sadly, we do not know why and Jason still continues to seizure on a daily basis.  But now, I feel okay.  It is what it is and we just take each day as it comes but truthfully those feelings I had in the early years still creep in from time to time. Sad is the one that gets me the most. 

 

Robert’s Sister:  Did your family treat Jason differently after the diagnosis?  If so, how?

 

Jason's younger brothers grew up knowing Jason as a brother who had seizures so, no, they just accepted him as he was.  The extended family, of course went through the same emotions as we did but overall he wasn't treated all that differently, we were just more cautious for reasons of safety.

 

Robert’s Sister:  Did the kids at school treat Jason differently because he had epilepsy? 

 

Yes, but not always in a bad way.  Jason was a pioneer of sorts at our local school.  No one previously had seizures to the extent Jason did or had behavior or mood problems (caused by medication) like Jason.  So for teachers and students alike it was a learning process.  Of course, there were always someone who teased but for the most part the kids at school and the teachers were protective of him when it came to seizures.  But he was also left behind as far as forming friendships, mainly because the kids just didn't understand why he acted the way he did.  Jason had many years of bad behavior caused by the seizure medications he was on so kids tended to leave him alone.  They were friendly from a distance but responded if it was required because of a seizure in the classroom or on the playground.  Jason was in Special Ed with mainstreaming out to a few classes.  For the most part, we had very understanding teachers for Jason who were easy to work with. 

 

Robert’s Sister:  What treatments has Jason tried?   What has worked?  What hasn’t worked? 

 

Jason has been on practically every medication out there.  None have really worked.  Most caused horrible behavior and mood swings so we finally settled on Carbatrol and Lorazepam which control the behavior the best.  On all the meds he still continued to seizure so it just was a matter of deciding which med gave him the best quality of life without turning him into a zombie.  He still averages 30 seizures a month which may seem like an unacceptable number but it just is what it is.  Besides the medications, he had a Temporal Lobe Lobectomy in 1983 which failed and a Vagus Nerve Stimulator Implant in 1999 which also failed.  He was just hospitalized a year ago for two more medication trials (“black label” drugs) and tests.  Neither medication worked and from the testing and because of his past history, the neurologists at The Epilepsy Group informed us there were really no more options for Jason at this time.   

 

Robert’s Sister:  Do you think the medications affect how Jason feels?

 

Most definitely!

 

Robert’s Sister:  Have you done any advocacy work (individually or with an organization)?  What made you want to be involved?

 

When Jason was first diagnosed with epilepsy, I became an ARC member and was on the ARC Board for many, many years.  I was also involved with Spark, a local parents group.  We worked with other parents, teachers and administrators and the community educating them about special need children and adults in our school system and community. I also helped, along with many others, in making the dream of a sheltered workshop and group home in our community a reality.  I am now a Crowdrise member trying to raise awareness and funding for epilepsy.   

 

Robert’s Sister:   How has epilepsy affected your life?

 

How has it not!  From the moment of Jason's first seizure, the whole dynamic of our family changed.  I quit my job. Instead of vacations, we spent time in clinic or hospitals. We spent time trying to convince Jason's brothers he wasn't being favored because of the amount of time his dad and I devoted to his care.  We spent time trying to deal with the guilt I felt, because I knew that is exactly how his brothers felt when they were younger. Having to ask family members to "watch" Jason from to time for one reason or another and knowing they really didn't feel all that comfortable taking care of him if one of us weren't there too, so I just quit asking.  I could go on and on, since I think it affected every aspect of our life in one way or another on a daily basis.  But, 40+ years later, despite the seizures and all that goes with that, life is pretty darn good compared to what many others face in their own little corner of the world.  I read somewhere that if we all threw our troubles in one big pile, we would probably still take our own back compared to what's in that pile.

 

Robert’s Sister:  What is your favorite memory of Jason? 

 

Jason giving his younger brother by eight years advice.  His brother had come home for the weekend from college tired, depressed and confused about where he wanted to go in his life.  And, as his Dad and I discussed this with him most of the weekend, Jason sat quietly on the couch probably taking in every word said but saying nothing.  When his brother came to say goodbye to him before heading back to college, Jason got off the sofa and looked at Ryan and said, "You know, Ryan, you can choose happy or sad. I choose happy, what do you choose?"  Simple as that!  Ryan said it was the best advice of the whole weekend. That piece of advice Jason gave his younger brother has stayed with me all these years.  If he can choose happy after all he has been through, then seriously, how can I complain how a life of epilepsy has affected me and my life?

 

Robert’s Sister:  Do you ever wish Jason didn’t have epilepsy?

 

Every second, minute, hour, day, week and year. 

 

Robert’s Sister:  What do you want people to know about epilepsy?

 

To just be aware of the stigma and fear that still surrounds those that live with epilepsy in the schools, workplace and life in general.  And of course the first aid that goes along with someone having a seizure. 

 

[Note from Robert’s Sister: First aid information from the Epilepsy Foundation can be found here.]

 

Robert’s Sister:  Is there anything else you want to say?

 

Jason will be 44 in a couple of months. He works at ABLE, Inc. (a sheltered workshop here in town), five days a week, lives at home with us, still thinks of his two younger brothers as his big brothers and is an uncle to three nephews and two nieces who are so gentle and kind to him. He loves his sofa, movies, puzzles and books and accepts life for what it is and never complains about anything.  If anyone asks if he is having a good day, he will always nod yes.  He still chooses Happy even if he isn't as verbal as he once was.  

 

Robert’s Sister:  Please tell us how we can contact any organizations you support or if you have a website or business.

 

Jason's Story is on Crowdrise at http://www.crowdrise.com/LindaAndersen.

 

Robert’s Sister:  Thank you, Linda, for sharing your epilepsy story!

 

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”   Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net. 

Traveling and Caregiving: Yes, There are Similarities

I had an amazing vacation (and can’t thank Other Brother enough for his help in “underwriting” this trip).  If only I could have brought back one of these delicious and artful gelatos for you!  (Who am I kidding - I wouldn’t have because this deliciousness was too wonderful!).  

Addicted to gelato

I did realize, however, I am a terrible traveler.

It’s not that I don’t love traveling because every time I go on a trip I scheme to figure out some way I could do it as a career.  (As long as my entire family could tag along since we all need to try as many flavors of gelato as possible).

I don’t travel often enough to be a confident traveler.  One thing I have going for me, though, is that I’m flexible.  An hour delay on the tarmac in Dallas (to fix a light bulb in the cockpit) wasn’t a huge deal to me.  Hubby and I kept ourselves entertained with an episode or two of NCIS which he had downloaded onto his iPad (his patience with the light bulb issue was a little less than mine).

I have to admit, though, once we finally made it to London and had to make a mad dash to our connecting flight to Rome, I was also cursing the darn light bulb.

While I wasn’t caregiving for Robert during this vacation, caregiving was on my mind.  Caregiving requires a great deal of flexibility too. When I notice Robert is dragging his foot more and is sleepier than normal, I allow more time for appointments or I let him sleep in and keep a sharp eye on him. 

What I’m not so good at when traveling or caregiving is recognizing my own needs.

If I’m thirsty, I often don’t realize it until my mouth is parched and I’m way past dehydrated.

If I’m hungry, it isn't until I start eating a meal at 9:30 p.m. that I realize all I’ve eaten that day was a muffin, half a spring roll and a piece of chocolate (oh that’s healthy!).

Caregiving can put the blinders on my eyes as far as my own needs are concerned too.  Many times, I don’t realize I need a break until I snap at Robert for getting his pajamas on too slowly. 

Why am I really frustrated?  Because I’m tired and want to go to bed but can’t until Robert is dressed, shaved and medicated.

I might get short with Robert if a doctor appointment has run long and I haven’t yet eaten lunch.  Whose fault is that?  Oh, yeah.  NOT Robert’s.

Caregivers are told to “take a break” or “Put your oxygen mask on first.” (My least favorite bit of advice).

Caregivers will be the first to tell you that’s a nice idea but not practical.  If Robert is having a seizure or is in the hospital or actually needs to be getting ready for bed (at his glacial pace), I can’t just stop caring for him because I need a break. 

What I can do is be better about recognizing my own needs before my lack of doing so makes me cranky/hungry/tired/a raving beatch.

I can bring a (healthy) snack to appointments or do some quick exercises while Robert is dressing at bedtime. 

I need to recognize when my bucket is empty and realize I need to refill it on a regular basis (when it doesn’t interfere with caregiving).

I also need to drink a lot more water whether I want to or think I need to!

And I definitely need to eat more gelato . . .

The Faces of Caregiving: Denise, Caregiving.com

As the finale in this series about Family Caregivers and their advocacy work, I’d like you to meet a woman who has been advocating on behalf of family caregivers since 1996. 

Denise M. Brown of Caregiving.com has been mentioned here before and was recently in Sacramento to lead a Family Caregiver Seminar.  Usually, Denise does the interviewing on her internet radio program, Your Caregiving Journey, but Robert’s Sister turned the tables and asked Denise a few questions!

Robert’s Sister:  Tell us a little bit about your advocacy work for caregivers.

Denise:  I advocate for family caregivers in several ways. I provide them an opportunity to share their collective wisdom and stories on Caregiving.com and on Your Caregiving Journey, my Internet talk show. I also create events, such as our Second Annual Caregiving Art Show, to remind them that they remain a creative being, even during a time that seems to sap the life out of them. I encourage family caregivers to see the impact they make in their families and in their communities; they truly disrupt to create change for their family members who need their care as well as for other family caregivers. I also advocate by sharing solutions through the seminars and webinars for family caregivers I lead. Finally, I educate health care professionals and our communities about the needs of family caregivers through speaking engagements and outreach activities.

Robert’s Sister:  What motivated you to create Caregiving.com?

Denise:  Caregiving can be a really lonely experience. I wanted to lessen that loneliness and isolation so I launched Caregiving.com in 1996 and online support groups soon after. In 2008, I added technology which allows family caregivers to blog about their days on the site. I really want the site to be about family caregivers connecting and relating with each other.

Robert’s Sister:  What is the biggest obstacle you've had to face in helping caregivers?

Denise:  Time – having enough time in my day to make the impact I want and family caregivers having enough time in their days to make use of the support available to them.

Robert’s Sister:  How did you overcome that obstacle?

Denise:  I have volunteers who help me; they welcome new members who join Caregiving.com. I want every new member to feel noticed and welcomed. And, I try to make it easy for family caregivers to get what they need from the site, whether they have only five minutes or an hour.

Robert’s Sister:  What changes do you see ahead for caregivers?

Denise:  I think family caregivers will care for several family members at the same time – perhaps parents and in-laws or parents and aunts and uncles. I also think care provided at home will become more intense and sophisticated. And, family caregivers will use technology to monitor care. In essence, the caregiving experience will become more demanding.

Robert’s Sister: What is your biggest wish related to your website and helping caregivers?

Denise: I just wish we could help as many family caregivers as possible. I also am working to create volunteer teams (I'm calling it a Care Squad) which connect with and help family caregivers in their communities.

 

Robert’s Sister:  Is there anything else you want people to know?

 

Denise: I'd like family caregivers to know that, while difficult and terrifying, it's good to reach out for help. I also want them to know that they have a very important story to tell. When you're ready to reach out and ready to share your story, we'll be ready to help and listen at Caregiving.com.

 

Robert’s Sister: How can people contact you if they want to get resources and support when caregiving?

 

Denise:  Feel free to connect with me at Caregiving.com, on Facebook (www.facebook.com/CaregivingSupport) and Twitter (@caregiving).

 

Robert’s Sister:  Many thanks to Denise for her time and her work on behalf of all of us family caregivers.  The beauty of the online work Denise does means it is possible to feel connected with others even if that person is across the country (or even in a different country altogether!).   

 

Please be sure to join me and Denise during our monthly chat about working caregivers.  We talk on the second Saturday of every month on the internet radio show, Your Caregiving Journey: Table Talk. 

The Faces of Caregiving: Laura - Spinal Cord Injury

Imagine the joys of being three months pregnant (okay, leave out the morning sickness part). Imagine the thrill of expecting your first child with your husband of 20+ years.

Laura and her husband, Greg, were experiencing this immense joy when Greg was involved in a horrific motorcycle accident and left for dead.

The strength shown by Laura when this happened to her and she was thrust into the world of caregiving is nothing short of inspiring.

Laura not only tackled the challenge of caregiving but became a devoted mother and terrific advocate for emergency preparedness for the disabled.

Laura recently lost her husband but continues her advocacy work and was kind enough to answer a few questions.

Robert’s Sister:   Tell us about your caregiving situation.

Laura:  When I was three months pregnant my husband was in a hit/run road rage motorcycle accident. It seemed only natural to care for my friend, my husband at that time of 20 years. He had a T-5 Spinal Cord Injury leaving him as a tetraplegic (legs & one arm) with Syringomyelia, Autonomic Dysreflexia and Complex RegionalPain Syndrome. He recently went to "dance with the Lord" on July 1, 2012.

Robert’s Sister:  Tell us a little bit about the diseases/disorders your husband faced.

Laura:  He required 75% assistance throughout the day to transfer, use the restroom, retrieve things that had been dropped on the floor and had pain so severe that it can cause the entire upper body to spasm uncontrollably. We had to watch for lumps on the back which was a sign of spinal cord fluid back up. We also had to watch for signs of body shutdown which was (high x (blood sugar + temperature + blood pressure)) = body shutdown. He escaped it four times.

Robert’s Sister:  As a caregiver, what is the biggest obstacle you've had to face?

Laura:  Ignorance. From day one we were told we couldn't continue to be together, that we wouldn't survive, that it was too tough, that people with disabilities got everything (even financially) including accommodations in emergency management design (of which there weren't).

Robert’s Sister:  How did you overcome that obstacle?

Laura:  Those obstacles – don't listen to naysayers!  They also say that marriages don't survive major family changes within only a few years. Within six years we had a spinal cord injury, a baby and move from one state to another!  We also continued to smile!  But we fought our challenges by getting active in the community via emergency management, through politicians and through writing.

Robert’s Sister:  What organizations did you become involved with due to your caregiving situation?

Laura:  In Florida we were involved with Spinal Cord support groups, Center for Independent Living, and County Emergency Operation Committees. In Georgia, I became involved with the Gwinnett Emergency Preparedness Committee, a National Emergency Preparedness Committee for the National Center for Independent Living Centers, the Gwinnett Emergency Assistance Committee, wrote essays for two (soon to be 3) Caregiving.com books, blogged on Caregiving.com, worked with the local Independent Living Center, and gave presentations in both states mostly on emergency preparedness.

Robert’s Sister:  What motivated you to be involved and to want to share info or advocate?

Laura:  My husband and our daughter. I was very frustrated that people with his level of medical challenges were set aside and ignored in community plans and furthermore were not acknowledged as being able to participate in parenting. It was troublesome that the only way one could find out information needed for assistance programs was to already be "in the know" and that is pretty much impossible when there are no warnings as to when a life changing disability occurs.

Robert’s Sister:  What have you done as an advocate or to share information with others?

Laura:  I have written many times in Caregiving.com and submitted essays for them. I challenge people in emergency management design by participating in any community meeting that I can. I freely and as often as I can give presentations, interviews and am planning on writing a book about the last six years.

Robert’s Sister:  Is there anything else you want people to know?

Laura:  To fight for your beliefs, you must believe in your fights. To succeed you must get others to believe too! 

If I can simply get my foot in the door and cause someone to think about something I said, then I consider it a success. Because thinking leads to discussion, which leads to debate, which leads to calls for change, which brings change about. Change can't come without thinking about it first. People call me an expert. I'm not. I am just a tenacious student who thinks in terms of family first and challenges second.

Life is about choices. Good/bad; positive/negative and yes/no. But at the end of the day, what decision are you willing to lay your head on your pillow with?!

Robert’s Sister:  How can people contact you if they want to learn more about?  

Laura:  On Caregiving.com, look up The Roaring Mouse. On Facebook I can be found at www.facebook.com/Laura.George.3532 or www.facebook.com/GetReadyGwinnett. On Linked In via Laura George or via email at educateandadvocate@gmail.com. At www.getreadygwinett.org, you'll find a dedication to my husband there.

Robert’s Sister:  Many thanks to Laura for her time and continued advocacy work even after losing her husband.  I’m excited to see the change this dynamic woman will bring about!

Next, I am excited to turn the interviewing tables on Denise M. Brown, creator of Caregiving.com. Once a month, I join Denise on her internet radio show, Your Caregiving Journey, Table Talk to discuss working caregivers but this time, I get to interview Denise about her advocacy work for caregivers.