December 4, 2021

Edna (from Easter Seals) and I were talking the other day about how short John's memory is becoming. An example is that I might ask him to go upstairs, pick up our dog Parker and bring him downstairs. John will occassioanly be able to do it, but usually can't remember what he was supposed to do, or is distracted by something else. Edna said she has to ask him again and again to accomplish tasks at Easter Seals. He also has become increasingly paranoid. He is scared outside at night. He is also very concerned about my safety if I go outside after dark. He follows me to try keep me safe. While that's sweet, if any danger were to occur, he would have complicated the situation because I'd have to protect him instead! Recently he said 'I don't have anybody who makes sure things are done right. I guess I just don't like me.' This morning he got up early (so much for my plan to sleep in!) and went to the bathroom. On his way there he asked me what he should do. I told him to go to the bathroom. Next he wanted to wash his hands. He said 'I can't figure out what to do. It's not set up properly. I don't know what to do.' I had to get out of bed and tell him to turn on the water and wash his hands. Once he started the process he was able to finish it on his own. A few minutes later I was giving him his medications, and he thought he needed to wash his hands again. So we repeated the process so we could move on to taking his meds. Earlier this week he seemed particularly confused one morning. He was unclear about whether the toilet set/lid should be up or down. Then he couldn't figure out where we were going - I continually reminded him that we were going to work. (He thinks Easter Seals is his work. He calls it The Office, or one time called it State Fund, where he used to work.) He's also had trouble eating breakfast this week. He's been staring at it wondering what do. In general, at meals, he gets up a number of times during the meal. He gets a drink, even though he already has one. Or another napkin. Or kleenex. It's usually for something he already has because I've come to anticipate this and try to make sure he has everything he needs before he sits down to eat. When we were decorating our Christmas tree last week he had quite a bit of difficulty putting the ornaments on the tree. One had my name printed on it. He asked who it belonged to. So in general he's definitely getting more confused as the disease progresses. But on a brighter note, sometimes he's more 'on'. The other day a couple of his friends took him to the movies and out for dinner. They said he was 'attentive and involved' so that's a definite highlight. John usually rallies when other people are around and hides some of his confusion. Or maybe he's simply more interested when he with other people so he's more focused on what's going on around him, rather than the cobwebs in his own brain. He's definitely more pleasant when we're with other people. I'm still seeing improvement with his seroquel medication. While he still complains about me killing him when I help him shower in the morning, he's not as aggitated as he was before. He complains, but he's not quite as upset and complies a bit more easily. Despite it all, he remains kind to other people. He often comments on how nice someone is, or how impressed he is with someone who helps us, like at a store, or recently at a financial meeting. Sometimes he's impressed when some fool acts like an idiot, and that always entertains me! I like that he'll still see something good in someone even when that person is frustrating the heck out of me! I know how stupid this sounds, but I remember a movie about a person with dementia. In the movie the husband reads her old diary to her to help her remember their lives together. Occassionally she remembers and they reconnect in a deeper way. I have not seen any sparks of memory like that in John. While I can sometimes explain who someone is and he'll understand his connection to that person, I don't see him gaining his essence back in flashes like that. I don't see significant moments when I can connect with who he was in a meaningful way. So no, the movie isn't real! But somehow it created an idea in my head that sometimes, on occasion, he would be able to find himself for brief time. And while it's true he definitely has periods of more clarity than other times, I can't ever reach - he can't ever reach - the person he used to be. What I wouldn't give for a small piece of connection like that!