Bryan's Story

 

"My caregiving journey is challenging, but I do not journey alone and my best is enough..."

Today's journey has been a little of everything, started my day with my grandfather "Papa", taking him to his eye appointment 45 miles away from home. Then returning back home to clean up the house a little before mom got back from her appointment where she learned she had a fracture in her foot... Just our luck. While we were gone a family friend sat with dad and Bryan to watch them, make sure they were safe and fed them lunch, our "respite" care. 

I called my brother's insurance caseworker to set up his care plan meeting for Friday. While on the phone with her she let me know I had been approved by the insurance company to care for Bryan and be paid for 22 hours of care per week. The way I learned of this program, the PCO Program, was through my father's hospice Social Worker. Bryan has medicaid and medicare, and with the type of medicaid he has we were able to get into the PCO Program. With that said, we had to set up a phone call with the insurance and answer 101 questions, then they sent his caseworker to the house to answer another 101 questions between him and I. To go through this process we also chose to go through my father's hospice, once being approved the insurance will pay the hospice, who then pay me to take care of my brother. The process is a little strange. Hopefully in the next couple of weeks I will receive my first check, which since leaving my job is much needed. I don't have a lot of expenses since I do live at home with my family and no longer drive 50 miles to work each day, but I still have the few odds and ends that I do need the pay for. 

As much as we have a "schedule" for how we do things in our house, caregiving for both my dad and brother. There is much we need to put into action and make sure we keep on top of so we don't become so overwhelmed. I know I need to work on going to bed and waking up at decent hours, but if mom can focus more on dad, even with her now bum foot, I can only hope to get Bryan on a better schedule. He hates to take showers, brush his teeth, or even change his clothes. All parts of the hygiene that go right out the window with some HD patients in the mid-stage of the disease. 

I feel this blog is going to have it's days where it becomes the horror stories of being a home caregiver for an HD patient. But remember, Bryan was diagnosed with JHD. It has a different set of "rules". My dad has always been relatively laid back and easy going through his progression. Yes, he had his bad days, bad moods, tantrums and depression, for the most part though he was always accepting of his diagnosis with HD. Bryan on the other hand, well he's a different story. 

I was a Sophomore in college at the University of New Mexico, 19 years old, when Bryan was diagnosed. He was just 22 years old. He had a lot of trouble growing up, mostly being diagnosed with ADHD during it's height in the early 90's, now looking back it was JHD showing it's ugly self. Bryan always hung around the wrong crowd thinking that he could fix them if he could just get through to them. He got sucked into cutting class, drinking, doing drugs and partying in his early teens, which was the same time my dad was diagnosed with HD. When he was 17, he was beaten severely by a gang of people at a party and had bleeding on the brain, cracked ribs and his face was battered beyond recognition. From this Bryan dropped out of high school as he was tormented each day. After turning 18, he was in and out of jail for different things, but once he turned 22 and released from jail the last time he returned home to my mother's house and began N.A. treatment, which I went to every meeting with him (I was a Psychology major, I thought I knew my stuff...). Once he was clean and sober we saw subtle signs that we recognized from my dad when he began to show symptoms of HD. Bryan's fingers were twitching, so were his toes, and his arms began to move subtly. We knew something was wrong, thus the process to test began. 

With our family history of HD, it was a much different process for Bryan to get tested. Already symptomatic there were steps that he did not have to take or was not put through like those who are going through pre-symptomatic testing. He did a session with genetic counseling, met with a neurologist and had his blood taken. A few weeks later after getting out of one of my classes, just up the street from where he was receiving his results with my mom and grandmother. My mom called, crying hysterically "Bryan has JHD, he has it!" I stopped in my tracks from and to class and began crying... thinking to myself "now what?"

We began attending the only HD Support Group in Albuquerque, at UNMH. My mom and brother went to a few meetings, then I started to attend after I got out of class. It helped, helped us know we were not alone in our struggles with HD/JHD. That we were not by ourselves in this rickety boat. From that point I became much more involved in HDSA and became a member of the National Youth Alliance. I needed to dive in head first and be a voice for my dad and brother, and still to this day am deeply involved. 

Bryan is my brother, he is my older and only sibling, some days I can't stand what JHD has done to him, what his rough teen year's turned him into, and the life stories he has that I will never know... He struggles every day with the cards he has been dealt, though he says he is not depressed, I wonder what he thinks (he does not talk about his diagnosis), what he feels, what his body is going through... I am his sister, his voice, his advocate, and his caregiver.