April 18, 2021

I was just outside spreading some wood chips along the sidewalk, and John was trying to help. He wasn't succedding in helping and we were both annoyed with each other. I was annoyed that he wasn't able to follow simple instructions (kick the chips that fell on the sidewalk into the flower bed) and he was annoyed that I wasn't making any sense. In this moment of frustration John asked me "Where's Susan?" Of course I answered that I was right here, but his question shook me to the core.

April 17, 2021

This past Monday FEMA began accepting applications for reimbursement for funerals for people who died from Covid since January 2020. My mom qualifies. So I got up early, showered, then began calling FEMA. I called 23 times. Yes, 23 times I hit redial, beginning the moment the calls opened at 6:00am. The phone line was busy every time except one. I got through while I was driving home from work at the end of the day. I listened to their extremely long privacy policy, then stayed on hold. At the 55 minute mark, the phone suddenly went busy. Oh well. Tuesday morning on a whim I hit redial right at 6:00 and got in! They said I was 864th in line, and that my call would be answered in 2 minutes. A few minutes later it said I was 848th in line, and my call would be answered in 4 minutes. That continued while I showered, then I selected 1 for a call back. Surprisingly they called me back in about 20 minutes. While I answered their questions to establish a claim, I was busy getting myself ready for work, and John ready for Easter Seals. Once my application was started, I later had to go online and set up an account, and will need to send in a lot of documentation. The most bewildering is that I'm supposed to submit documentation that proves my mom did not have burial insurance. That's a good one - I need to prove something doesn't exist. Hmm. Anyway, while I was trying to get myself ready for work, John ready for Easter Seals, and simultaneously look up and answer questions for the FEMA representative, I was struck by John's behavior. He was appropriately quiet because the phone was on speaker. But without our typical conversation during the dressing process, he seemed very unaware of what to do himself. I'd hand him his underwear, and he'd figure out how to put it on. But then he'd just stand there, unaware of what to do next. Then I'd hand him his pants, and he'd put them on. Then he'd stand there and wait. So I'd hand him his belt. This process continued the entire time. He never moved to the next step in dressing without my input. If I didn't hand him his deoderant, he didnt seem to know to put it on, even though it was sitting out on the counter. But then this morning I noticed he was a bit more independant than the other morning. He put his deoderant on without me specifically telling him to do so. Things like that. But it didn't seem to occur to him to comb his hair. It's weird how on some days he seems to move through the motions, then on other days he's bewildered by it. We had a handyman install a hand held shower head about a week ago. That's really helped. When John doesn't get his hair wet after repeated requests, I can grab the shower head and soak him down. Of course he's sure I'm damaging his eyes in the process, but at least I can get him showered more quickly now. Another thing I've noticed is increased confusion at night, especially when he's changing out of his clothes and into PJs. I'll hand him his PJ pants and he'll put them on. But if I'm distracted doing something else, I'll discover he's taken his PJs off and he's putting his jeans back on. The same thing happens with the shirt. This is quite commom these days. He sleeps well though, and that's a life saver. He's better able to function when he's well rested and feeling good. Still, the dementia creeps on, sometimes imperceptively. Then something occurs that brings the advancement to the forefront, and then I can't deny it's continued march.