One of the many things that are challenging about HD is the reversal of roles between a parent and a child. This is a problem that anyone who has had to care for a parent will understand. You go from being the one provided for and taken care of to being the care provider. You now have to call the shots and be the adult. It is not so bad if you are already at a stage in life where you have children or responsibilities of your own, but going through that role reversal while still a youth is not an easy task. Sometimes when doing tasks together that we have always done together I have to explain how to do them to her.
I will never forget the first time this was really driven home for me. We were working on a project together in our basement, laying squishy tiles on the floor so you wouldn’t have to walk on cement. My mom has done projects like that her entire life, so I was not expecting it when were trying to lay the floor and she asked me how it should be done. I had to tell her how to do it, when she was the one who showed me how to do it just a few years ago. It was a shock.
This is not to say that I take care of my mom 100% yet, because my dad is still there to take care of her the majority of the time, but while he is at work my mom and I are alone together and on off days I have to be the one to plan the day and get things started. I have to help push her to do things and follow a schedule. Often I make lunches and food for everyone so that she gets fed, because otherwise she will forget lunch or just eat junk food. These moments don’t happen all the time, and she could have been having an off day because she can still lay tiles a lot better than I can, but it was gut wrenching for me. It’s little moments like that where I realize how much of her this disease is taking away. It is taking my mom, the person I always looked up to, who homeschooled me even though it was not fun, who was stronger than most men and could do literally anything she put her mind to. In little pieces bit by bit she will be gone. Part of why I wanted to write this blog, aside from raising awareness, was to save the beautiful memory of her I have in my head. This way, I will always be able to remember her the way I still see her in my mind.
We take life one day at a time. It is easy to get caught up in the details and the bad stuff. It’s like when you go to the beach and its beautiful and sunny out, but then storm clouds appear on the horizon and everyone packs up and leaves. If those people had stayed around they would have enjoyed a lovely day at the beach, but they were too busy looking ahead and speculating how bad the storm would be to appreciate the sunny day they already had. Life with HD is like that. You have to appreciate what you have now despite the impending storm.
sleepdeprivedmommyoftwo 