Finding help for Chris
While Chris had the same disease as his dad, he had a less common form called Juvenile Onset Huntington’s disease. This meant even though I thought I understood the disease that tortured Mike for over 14 years, it would only take a fraction of that in Chris and it would be rapid and severe.
2014 came fast and hard. Chris was hospitalized multiple times, and by the end of 2015, he was in a wheelchair. Our lives became all about Physical and Speech Therapy. Chris now had trouble chewing which had required me to perform the Heimlich 3 times (once on Thanksgiving Day). Smoothies became our life, we made smoothies for breakfast and sometimes dinner on the days he couldn’t muster the energy to try any foods. The foods he did try to eat had to be soft, chopped, or ground.
Things in our home were forever changed. I was now doing my required clinical hours for school in addition to the study hours and work. Todd had given up his sales to stay home and care for Chris. Chris had gone from walking and talking to almost total dependence on us for everything. We needed help; I started researching where to find help. This was when I became genuinely frustrated with healthcare.
The more I looked, called, and went to places that could help, Chris didn’t fall into their “criteria.” Had he been a minor, there were programs and if he had been over 65, there were programs, but Chris was in his 20s which meant he fell between the two and there is a huge void there!
Chris had worked hard in Physical and Occupational Therapy; it helped that he had a crush on his sweet therapist. We completed the BIG program which was a newly created program for movement disorders such as Parkinson’s and Huntington’s to help preserve movement and prevent falls as much as possible.
But one day on the way up the stairs to the dentist Chris’ legs just gave way. In only a few weeks we would need to locate a walker for him, and that is no easy task for a 24-year-old who needs it to look cool. His cousin took one we found and covered it in camo duct tape until we found the “ultimate” Rollator made for rough terrain and perfect for Chris.
Chris needed time away from myself and Todd as most adults would. So, we discovered an adult daycare; now you need to know that Chris, like his mother, loves the elderly and would sit and listen to stories all day given the opportunity. Now he had it, and they loved him. Medicare paid for a portion of this program, but there were some out-of-pocket costs, so he only went three days a week. These days were the highlight of Chris’ week.
Like most young adults Chris liked to do his own thing; the problem was he couldn’t do most things without help and so he would end up injured.
Even with the disease progression, he remained very physically strong, and if he wanted to do something, it would take a few men to stop him. Chris’ proudest injury was his broken nose. I will tell you the story, the way Chris told it to me. He was a daycare, and they were walking the indoor track with his favorite caregiver at his side. Then Chris thought to himself, how much he missed running, so he ditched her, his walker, and took off. He said to me when I met him at the hospital, “Mom, it was worth it, it was the best 5 seconds I have had in a long time.” my heart just broke as we laughed.
The immediate fear and anger I had when I got the call, had resided. I knew he had been taken care of appropriately; he was just stubborn and wanted to run. I tell you these details so as a caregiver you know you are not alone. I know that guilt is a real emotion with caregivers and should be validated and supported as you work through it. But remember you cannot prevent every injury, illness, or disease no matter how hard you try.
Since he was no longer listening to the daycare team, we had to go a different route. I found some Home Health help through a Medicare program that I had no idea existed and varies from state to state. But they paid for an Aide to come in and help Chris a certain number of hours per week. So, we split the hours into small amounts daily for him to be bathed, dressed, his room cleaned, and his clothes washed, etc. This was a great relief to Todd, who was the main daytime caregiver, and enabled him to run errands and take a break for a few hours each day.
That is when we found our dear friend who became his other part-time caregiver ( now we paid totally out of pocket but she was worth every penny). On the weekdays, we had the Aide come in for 4 hours, followed by his caregiver until 5 p.m., they hung out, and she took him to movies, shopping, and gave him an opportunity for a somewhat normal young adult. Todd took over for the dinner hours and then I got home around 8 pm and would take over, get him tucked in and ready for bed.
Next came Respite Care, and this was just plum amazing. This varies by organization, state, and many other factors, but essentially, they paid us a certain allowable amount so that we could hire a full-time caregiver for a few days and get away. Then we found a summer camp for him through the Easter Seals and he had a blast. We drove him up and dropped him off meanwhile Todd and I rented a nearby cabin and vacationed, but remained close enough that we could get to him if needed.
It was no easy task finding all of these programs to assist Chris, us, and his caregivers. But it did make his last years with us more pleasant and gave him opportunities to have a life outside the home and his parents.