It's been a while since I last wrote. So much for writing at least once a week. I'm not sure why I haven't been able to write. We missed a lot of time at yoga as well. Yoga and writing the blog are both activities meant to help us survive caring for Mom. Funny how those are the activities that get dropped when time seems to run short. That resolution to relax and live in the synchronicity as we did on vacation seems to have suffered a terrible death. Let's see how my powers of resurrection are working. We started back to yoga this week, and went both days we had planned. And though I spent a good chunk of time devoted to writing today sleeping in Starbucks, here I am, writing again.
How's Mom doing? The Energizer Bunny keeps on going. We discontinued her Aricept, something her neurologist said we should do the next time she had a downturn. At this stage of Alzheimer's, it appears only to prolong her life. Prolonging her current state of misery is doing her no favors. So when we returned from vacation, we assumed she would be worse, and stopped the Aricept. She wasn't any worse; in fact, she was surprisingly alert. We stopped the Aricept anyway. Then we met with the neurologist again, who this time suggested we could stop the Namenda. Both Jeanne and I had the understanding from our previous meeting that she thought the Namenda might have some behavioral benefit, and we could keep that going. This time, she said there is no medical benefit from the Namenda without the Aricept, and there was no reason to keep her on it. We were confused by the change. I called Mom's primary care physician, who is not an expert in Alzheimer's and she said she would research it. After a week, we decided to take Mom off the Namenda, even though Dr. Barb had not yet gotten back to us with what she found. That was about 2 weeks ago, and again, we see no difference.
Okay, it is now a few days later; once again, time slips away.
To continue, Mom is now off both the Aricept and Namenda. Given our confusion about taking her off the Namenda, I tried doing a little online research, and couldn't really find anything except for other caregivers and those with Alzheimer's writing in to different forums debating the use of these medications. I was surprised by how many complained of side effects and discontinued the meds. Mom went on Aricept while she was still living on her own. She didn't tell me when she first went on it, so I never noticed a difference. If she did, she didn't say. She started the Namenda after coming to live with us, and that made a positive difference. Her degeneration before Namenda consisted of plateaus, then a sudden drop in functioning. It was incredibly hard on all of us. We'd go along, thinking things were okay, getting used to whatever level she was at, then without warning, there would be a sudden, heart-wrenching degeneration. The Namenda smoothed that all out. No more plateaus, and no more falling off the edge of a cliff. The gradual slope of degeneration is much easier to manage and adapt to.
Right now, Mom is nonverbal. She can neither walk nor stand without help, and even with help it's a struggle to do either. Her body is becoming more and more rigid. It's a process the neurologist calls 'disinhibition.' The word is counterintuitive to what I see happening, but she explained it by saying that the mind tells the muscles to relax; otherwise, the muscles' natural state is to be contracted. As the brain shrinks due to Alzheimer's, it loses the ability to tell the muscles to relax. Thus they become more and more rigid, tight, and inflexible. Who knew?
