There are good days and very bad days when you care for someone with HD.
Today was a better day as I caught my mom smiling and laughing. I took her for a short short outing and she secretly bought candy. This is one of her major vices. She should not eat candy, but seeing her smile and laugh as she got caught, made me happy. These are some of the very few good moments of caring for someone with HD.
I currently care for my mother and sister, both struggling with HD. Both are in different stages of the disease. One of most difficult things to deal with a person who has HD is how irrational they can be. This past week my mother wanted to move out of my home! I have been her caregiver for a few years now since you slowly started declining from HD. My mother can no longer take care of herself independently and she can no longer work and/or drive.
Currently she is struggling going up and down stairs and getting to her bedroom is an issue daily. So I made some alternate sleeping arrangements and I moved my mom downstairs. She about lost her mind! She was angry and she said she wanted to move out of my home. Mom has nowhere else to go, but she did not care. She had already made her decision to move out.
Earlier last year I designed a Murphy bed for her downstairs and I designed a space knowing that she would need a place to stay as her HD progressed. Mom knew this change was coming, but the next day after change she said she was moving out. She was moving about an hour away from my home with someone she knew from church. I explained to her that she could not move out and that I was her caretaker. She had a major tantrum.
There are many times feel my mom is being mean and stubborn, but I am slowly learning this is part of HD. It is very hard to deal with her at times. Mom is like a child at times, a very unreasonable child. She still thinks she can drive and work. I have to remind her daily that she can no longer drive and that she can no longer work. We talk about this often.
Everyday is a new challenge. Every person affected by HD could experience very different symptoms. Caring for my mother and my sister with HD, at the same time with different
symptoms, has been one of the most challenging things I have had to encounter in my life thus far.