CAREGIVING: I should really be balancing my checkbook. And I have a song that is ready to be recorded. But today, I felt a little frustrated taking care of Kathy, and I feel guilty because I know I was whining about it. As Huntington’s Disease advances, the body stops cooperating. Today, was one of those days — tomorrow will probably be better. Yesterday was better too. There are just some days that suck and today I was a little fried. I’m better now 🙂
I had more trouble than usual transferring her to and from her wheelchair. And lifting her up out of the sofa. Part of it is my body and joints not cooperating. And we can barely fit in the bathroom door for one thing. Once Kathy is in there I let her have a few minutes of privacy. I come back to find her bent over because she has no trunk strength. I will ask her, “Did you have any luck?” Her reply: “I can’t pee.” I would then check her depends and realize she had already gone. I try to have another depends nearby anyway. Sometimes she will apologize and I’ll tell her that’s why we have them, and it’s no big deal. Today, it seemed like it happened three or four times and changing her pants and shoes in the bathroom is awkward at best. We have tried to use the commode outside the bathroom, but our house is so tilted that it wants to walk across the room. It would be funny if it weren’t dangerous. But I need to try again.
I always bring her to the bathroom before we eat and again after we finish. Schedules and routines are important with HD. Tonight she couldn’t pee after dinner, so I transferred her to the sofa and tried to clean her face with a wet wash cloth. She stopped me and said it was “… cold and it’s made me pee.” So, back to change another depends. At least I thought that one was funny. I buy them in bulk from Amazon anyway.
In other news, on Monday we went to her primary care doctor. We asked about getting a different wheelchair and getting a new swallowing evaluation by a speech pathologist. Kathy’s blood pressure was perfect, so the problems are just with the blood pressure cuff I have, and the fact that her arms are always shaking (pulse: 220). I told her doctor I was giving her generic Mucinex and Benadryl to control her congestion. She said to just use the Benadryl for now. A physical therapist called that afternoon and came the next morning to start-up services again. He showed up in shorts and a T-shirt even though it is still pretty cool and rainy out. He will be working on some flexibility exercises with us and called a wheelchair “expert” to see what can be done. They will both be here next Thursday. I’m actually not very optimistic. He said it will probably take two or three months to get a new chair. Who knows what she will need by then and it will probably take up a lot of space. He asked me if Kathy was DNR (Do Not Resuscitate) or Full code. I said that as it stands now we would call for an ambulance. The chances are it would be for a fall or choking at this stage. Later on I’ll have to decide when it is right.