July 1, 2023

Yesterday we were over at John's sister's place, and she showed him a picture of their dad and asked who it was. John said 'My dad'. It was a nice moment of recognition. A bit later though he wasn't able to identify his mom in a picture. Or at least he didn't say it. In one way, John is a bit easier to take care of these days. He quietly stands around or wanders a bit around the house. He doesn't do anything so it allows me to do what I need to do without much of a problem. All is fine until I ask something of him. He simply doesn't understand what I'm saying. For instance, I'll try to change his shirt and he'll 'refuse' to lift up his arms, or even pull his hands out of his pockets. If I try to push it, he'll resist more strongly so I'm unable to put a clean shirt on him. Or he'll refuse to hold his arms up while I put deodorant on him. So I'm holding his arm up while he fights to put them down. Another example is tryng to get him to pick up his feet so I can put his pants on him. He plants his feet firmly and won't pick them up or allow me to. Or he yelps when I pull a sock on his foot and pulls his foot away. He also has a lot of difficulty brushing his teeth, so that's only happening once per day, in the morning when he's a bit more compliant. These kinds of resistance add up and make it difficult for me to get to work on time in the morning. I'll allow more time and yet in the end I'm still running late! Another odd thing he does - he's hesitant to step off the rugs on the bathroom floor. It's weird, he stands at the edge of the rug and doesn't want to walk to the shower or the toilet. He's having more difficulty recognizing the toilet. He's peed in the bathtub and attempted to pee in the corning of our bedroom. I jumped out of bed screaming for him to get to the bathroom - fortunately it worked that time. Sometimes we'll stand by the toilet with me cajoling him to use it, at least with some success. So far he's only had a few accidents but I need to stay on high alert. Today I took John to the grocery store with me as I always do. It's a holiday weekend so the store was busy. There were a number of times when people were clearly annoyed that John was standing in the way and not moving to allow them to pass. At the self-checkout he was blocking another person from accessing the scanner. They tried to get him to move saying 'excuse me' but John didn't understand. Since he looks fine they are simply annoyed, not recognizing there is something more to the situation. Then out in the parking lot I couldn't get him into the car and of course the person next to us showed up and witnessed our little battle, waiting for us to move so he could get into his own car. Good grief! All this to say that I don't sleep well anymore. I used to sleep like a rock, falling asleep almost immediately. Recently I lie awake in bed for a few hours a couple times per week. My brain is mush too. I don't think things through like I typically would. Last week John had a dentist appointment. It wasn't until the night before that I thought about what a challenge that could be. As it happened, they called me back to help almost immediately because he wouldn't sit down in the chair. I showed him how to do it a couple times and after a few minutes he sat down. Then he wouldn't lean his head back. Finally he did and then we had to get his mouth open. Eventually placing the little mirror instrument between his lips worked. They managed to get his teeth cleaned reasonably well. But I'm guessing that'll be his last dentist appointment unless something goes awry. Edna seems to be able to keep John at EasterSeals for now. The director does not think he should be there anymore, but Edna insists that she can handle him so the director is allowing it so far. Between the looming need to make alternative arrangements, and the toll caregiving is taking on me, we've done a couple follow up visits to the memory care facilities that seem the best for our needs - and the outrageous prices. This exercise has reinforced our top pick. It's bright and airy, in the middle of the pack regarding price, and seems to offer what we're looking for. That said, the staff at these places are so poorly paid that it's unreasonable to have high expectations - except maybe at the most expensive places. People in the dementia support world refer to the transition to memory care as being like a death. Caregivers universally feel grief and guilt over it, and I'm no exception to that. I feel defeated about it - that I can't handle what I 'should' be able to handle. No one in the thick of this fight truly believes that, but it seems much of the rest of the world often does. The level of need for care also varies over time, and depends on how dementia manifests itself in each individual. Some people are easier to care for than others. I do know that if John could understand all this, he wouldn't want this for any of us. I know I wouldn't, and I need to make smart choices for our kids too. Obviously this disease is horrible for the inflicted, but it is also uniquely horrible for the caregivers and families. What other people see of us is the best of the situation. It's what happens in the privacy of our home is what's difficult. The stuff that happens when we prepare to go out and be with others, or run errands, or whatever. That's the hard part. And it's exhausting.