Sunday, November 9, 2014

Epilepsy Awareness Month Day 9: Impact of Epilepsy on Caregiving

The family care Robert has needed due to his epilepsy has increased through the years.  He was pretty stubborn as a boy and young man and resisted wearing a helmet for years. I don’t recall our mom pushing the issue but I could be wrong.  Because his head was not protected, Robert suffered numerous concussions which are now being partly to blame for his recent decline.

Two thumbs up for these guys! 
It is when I don’t know these kinds of details that I really wish Mom was still around. I wish she were around in general, of course, but I would love to sit with her and ask her how it was caring for Robert when he was little and dealing with his epilepsy. 

My recollection is that Robert was active and a little bit of a daredevil.  In fact, as a teenager he decided he wanted to become a stunt man in Hollywood.  I thought that was pretty cool and, since I was involved in theater, we talked about when we would be in movies together. 

The stunt man thing didn’t come together for Robert and my own dreams of Hollywood only made it as far as being an extra in a few movies and television shows made on location in our town.

(The line forms to the left for my autograph.)  J

I only tell this story to illustrate how mobile Robert was and how full of dreams we all were for his future. 

There wasn’t a lot of caregiving going on.

Mom or Dad took him to doctor appointments and were adamant about finding the best for him. They even flew him to Switzerland soon after his diagnosis when he was seven years old. When we moved to California, they found terrific doctors at the local teaching hospital.

As a young adult, our Dad set Robert up in an apartment to live by himself (after having lived both with Mom and then with Dad).  Unfortunately, Robert was taken advantage of by “friends” who wanted to use his apartment to crash, mooch and partake in various illicit activities.

Dad was supposed to be the one keeping an eye on Robert but found it difficult to keep people from taking advantage of him.  Eventually, Robert moved in with Judy.  Judy was several years older than Robert but also had epilepsy and was deeply religious as well.  Robert eventually moved in with Judy and they lived together for many years.

Caregiving at that time was the two of them taking care of each other and Dad handling Robert’s finances. Dad only half-heartedly took care of Robert’s bills because by the time I took over Robert’s care, he had magazine subscriptions paid through the next ten years and was a lifetime member of some handyman magazine (and still has the ring to prove it).

Robert started missing doctor’s appointments and frequently ended up in the hospital due to various accidents at their house. 

Robert’s caregiving needs increased as time went on and continue to do so today.  Comparing how Robert is today to how he was when we joked about taking Hollywood by storm is a dramatic difference. 

The impact of epilepsy on Robert’s life and on his caregiving needs has been enormous. In the video today, I talked with my husband, Richard, about caring for Robert and also talked with Robert about how it was being cared for by us. 

I love doing these videos as I learn something new with each one. As far as the decision to have Robert live with us, Richard says in the video that it was not even a question. Robert needed our help so he didn’t even have to think about having him move in.

My decision to have Robert move in with us came with checklists, to-do lists, pros and cons lists, wringing of my hands and much questioning whether we were doing the right thing. 

According to Robert, it appears the decision to move in with us was very easy for him. 

In a future video, I will explore with Robert how he feels being cared for considering he lived independently for so long.  Robert’s memory is quite impaired so it will be interesting how much he does remember and how much he even realizes the increase of his caregiving needs and how he feels about it.

Today, let’s just listen in on Robert and Richard talking and answering my questions about two brothers-in-law living together.


Unknown said...

Hi Trish,

Each time I read your posts and am so heavy to leave a comment. Someday I'll write more. Your memoir is on my christmas list. I love the videos too. Cheers to you all and thx for sharing and doing all these

Trish Hughes Kreis said...

Marie, Your comment means so much to me. Thank you very much for watching the videos and being a supporter of Robert. You help keep us going!