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.
Today was a very challenging day with mom. Everyday is a different challenge with her.
Today, once again, my mom who can not care for herself anymore decided she wanted to move out of my home. The first thing that came out of her mouth today, was ” I am moving out. I already spoke to a sister from church. I am leaving.” Why is she so upset? A simple change in sleeping arrangements in our home. This is for her own, well-being, but mom does not see it that way. Mom can not go up and down the stairs anymore. She struggles daily. Yet, she decides she wants to move out whenever things do not go her way.
We had a nice Murphy bed built in my downstairs office for her. This would be easier for her, but she could care less about it. Today she threw a tantrum. Yes, at 59 years old, she has tantrums. She does not know what is best for her. Many times I feel like I am walking on egg shells with her. Will she be happy, sad, depressed, or what will it be today? With HD, things are so unpredictable. Over the last five years, my mother has gotten worse. One day she is happy, other days she is not. She has turned into a child in many ways. My mom is slowly teaching me more compassion and more and more patience. She has tested me so much in the last couple of years. In her mind, mom thinks she can still drive. She is in pain daily. In pain of some sort. This year I started her on CBD oils. This has been super helpful. She is currently taking a few meds, but this is by far working with her. Prayer has gotten me through days like this.