Tuesday, November 29, 2016

Epilepsy Awareness Month: Follow-up Interview with Richard

As most readers know, Richard is my husband and is my co-caregiver for Robert. I really wouldn’t be able to continue to care for Robert while working full-time without his help. Richard is at home every day to make Robert’s breakfast, send him a delicious lunch to program and then greet Robert when he gets home from program.

Richard and Robert at Disneyland
Robert loves his “guy time” with Richard and they joke and laugh and enjoy watching Family Feud or Wheel of Fortune together.

Richard is my “MacGyver” and is constantly coming up with ideas to make caregiving easier or more fun. He installed grab bars in our new home; he set up a rotating bath seat so Robert wouldn’t hurt himself in the new tub (and it would be easier for me to get Robert in and out of it) and he is the one who, years ago, found what has become our lifesaver: a urinal guard for Robert to use when he uses the bathroom!

Richard also has ingenious ideas about fixing Robert’s walker or wheelchair and has even come up with a way to make a bowling alley for Robert! Robert loves to bowl and we have a very long hallway which Robert uses for playing ball with the dogs. Richard is creating bowling pins from large sparkling water bottles and we are going to have a bowling alley in no time!

Of course, living with “two wild and crazy guys” can drive a girl batty sometimes but I wouldn’t have it any other way.

I loved hearing Richard’s perspective on caring for Robert and the decline we’ve witnessed the last few years. (You can read his first interview posted in 2012 here.)

Robert’s Sister: I am curious what changes have occurred in the last four years. Please remind us how epilepsy has affected your life.

My wife and I care for my brother-in-law, Robert, who is now 51 years old. He now lives in our home and has for just under four years now and has been his advocates for just about eight years.

Robert’s Sister: What is the most significant change in your life since our last interview?

The biggest change in our lives since the last interview in 2012 is we ended up moving to a single story home to be able to give Robert a bedroom of his own as well as the access to an actual bath tub instead of giving him sponge baths. The second noticeable change in Robert is that his balance, incontinence and his overall ability to care for himself is very limited to feeding himself, once we cook everything.  Robert is able to feed himself as long as we prompt him to keep things moving or else he can take two to three hours to eat a basic meal.

Robert’s Sister: Has the treatment changed for your loved one?

The treatment is pretty much the same. He is being watched more closely to make sure there are no major declines and this comes from us watching him and relaying it to his doctors.

Robert ready for Day Program
Robert’s Sister: What sort of cognitive, intellectual, emotional or physical changes have you noticed these last four years?

Robert’s memory seems to be off by a year or so, yet at times when he starts telling you about his childhood and when things happened in his life his mind is like a steel trap. His religious connection is a strong as ever and he makes sure he’s watching church, wearing his white shirt on Sundays. He does seem to repeat thing quite often and more than normal. He can say, “Good afternoon, Richard” to me and five minutes later say it again as if the first time never happened.  In that respect, this does seem to have gotten worse.

Robert’s Sister: Do you think your life with epilepsy has improved, stayed the same or become worse these last four years? Can you tell us why you think so?  

Robert’s life with epilepsy has improved as he went from sleeping on a fold out twin bed in our living room on the first floor of our home with only a half bath and he was unable to make it up the stairs to a bath tub or shower.  He now has a full bath room 2 ½ feet outside his bedroom door.

Robert’s Sister: What has been your favorite moment these last four years? 

My favorite moment this past four years has been working with four other caregivers and coming up with a series of books, 365 Caregiving Tips: Practical Tips from Everyday Caregivers to help those starting their journey in caregiving or even those who are now veterans. These benefit not only those caring for someone with epilepsy but all ailments. The next best thing is getting involved with Epilepsy Awareness Day at Disneyland (EADDL) and for the past several years now being able to attend and take Robert down with us. Seeing his face when someone says they “know who Robert his from seeing his face on the internet,” – his face just lights up. It’s priceless.

Robert’s Sister: What do you see for yourself or your loved one in the next four years?

I am hoping to see minimal decline yet in looking back to four years ago and seeing his decline from then to now, I’m not sure where he’ll be. I am hopeful that some new treatment or medication will be created that will benefit him if even only in the slightest.

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

With everything Robert has had go on in his life with the surgeries, medication changes, failed treatments and his recent decline I am so happy that none of it affected his religious beliefs.  Without his praying, watching church on Sundays to his asking how you are 10-15 times a day or out of the blue saying he said a prayer for whatever ailment you have at the moment, he would not be Robert. 

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

I run a website to help those with chronic pain and I also cover topics to help the caregiver. I’m also on Twitter and Facebook.

Many thanks to Richard for all he does and for taking the time to answer my questions. I love how hopeful he is for Robert’s health and admire Richard for all he does, in spite of his own health issues. I should nominate him for Husband of the Year or something! J


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