February 19, 2023

This week a big thing happened. We sold John's comic book collection. 'We' means my niece and her fiance. They were AMAZING! After much work sorting and organizing (4 long days) and researching (visiting shops, talking to owners, researching online, participating at a comic book convention, stuff like that) they found a buyer and sold the entire collection to him! All the books are modern, and they're not in demand. I remember John saying that his collection wasn't worth anything - he sold the valuable ones before I met him and used them as a down payment for a house. The ones he had now weren't old and therefore weren't worth a lot. But there were A LOT of comic books and the money we received will be used for John's care. He's not aware the boxes (60 of them!) are gone, but I'm certainly happy they're gone! They filled almost half a bedroom. We did find a few boxes that were filled with comic books that were still in the shopping bags he brought them home in. He bought them, but never took them out of the bags. I assume those are among the last issues that he purchased. Danielle and I visited a few more care facilities a few days ago. I'm not ready for that yet, but I know that EasterSeals will say, in the not too distant future, that John is no longer appropriate for their program. When that day comes, I need to be ready to make fast decisions and preparations. We agree on the places we like best, but the cost is mind boggling. Crappy places are expensive ($6k per month), and nice places are extremely expensive ($11k per moonth). Of course we have no idea how long we will need these places, so it's difficult to budget the total costs involved. It's like buying a house where you know the monthly payment but you have no idea how long you'll need to make that payment. The money involved is horrifying. In other news, he's continued to be agitated. Today he asked me "Where's your husband? Can I talk to him?" I've also noticed more comments he's making to the man in the mirror. Recently he's been fairly obsessed with his baseball caps. They're in a bin and he keeps pulling them out, spreading them around the room, trying them on and moving them around. I'm not sure about this, but I think John only uses my name and his brother's. He also talks about going home (the home of his childhood I think) and says he wants to talk to his mom and dad. When he sees the moon he often comments that his dad went to the moon. His dad worked on the space program at Rockwell, so that's the connection. It's such a strange disease. Weird twists and turns, unique to each person. We never know what each day will be like as we watch behaviors come and go. But sometimes he laughs and his eyes sparkle in the way they used to...

February 11, 2023

Today was another rough day. It wasn't at first. After lunch we went in to my work so I could catch up on some paperwork. He was good there. He just watched me and for the most part stood there silently. After that we ran some errands and then when we got home he started griping at me, accusing me of the usual list of things. He griped at me for a couple hours. He refused to eat, dumped his glass of lemonade down the sink, and continued his rant. I was tired but decided to distract him with a couple more errands. That seemed to work. He was also very agitated earlier this week, but that started pretty much first thing in the morning. He refused to brush his teeth more than a few seconds. He complained on the drive to EasterSeals, with his typical list of accusations. When we arrived there, he refused to get out of the car. One of the workers came outside to help, so he turned his accusations from me to her. I got him into the building but then he followed me out. Another worker came to help, and in a very nice voice exclaimed that she was so glad to see him that morning and was hoping he would help her. I finally slipped out the door. Edna arrived at EasterSeals an hour later and said he was calm by then. But later he got riled up again and she struggled to keep him calm. I asked her to slip him a seroquel (she's not allowed to do that there) so she did. That helped him relax but it takes about an hour to kick in. And then the next day he was more himself again. Weird. A couple weeks ago Edna took John for a good walk to Walmart and lunch at McDonald's. They had a good time and shopped in a few stores. Then, as they were walking back to EasterSeals on Kraemer Blvd, all the sudden John unzipped his pants and started peeing in the grass next to the sidewalk! Edna just tried to shield him from being seen and told him to hurry. Yikes! He needs more help in the bathroom these days. He's not sure when to wash his hands. And he needs verbal prompting to wipe his butt. Sometimes he says he has to pee, but then forgets that he does and refuses to go. John thinks he sees bugs. Sometimes there speck of some sort that he's pointing to, but other times there's nothing there. Sometimes he thinks bugs are one him. He struggles to find words more and more. He might say 'mmm' insteaad of a word, or use gestures. When I spoke to the MediCal Requirement Specialist a few weeks ago, one of the things she suggested is that I talk to an attorney about a 3100 Petition. Basically that means I would ask the court to assign John's income to me, therefore qualifying him (because he wouldn't have income, it would be viewed as mine) to receive some funding for inhome care. I had a phone appointment with an attorney who said that wouldn't work unless something happened to me (like if I had a disease or some type of disability) so that I required his income. That makes sense. The bottom line is we can't get any assistance unless John needs nursing care. The attorney pointed out that although California has a reputation for robust social services, they offer much less than many other states when it comes to our type of needs. On another note, our daughter moved out, and our son moved back home. John seems a bit unsettled by the changes - as though he's aware some things have changed but he doesn't understand what they are. In one week Edna will be gone for 4 weeks on vacation. She and I fear that if John is at EasterSeals for a full 9 hours each day like he is now, the staff will have difficulty with him and the directly may very well decide he's no longer appropriate for their program and kick him out. While that is inevitable, I don't want that to happen any early than is absolutely necessary because then I'll be forced to find a more permanant care solution. That's difficult and terribly expensive so I need to delay that as long as possible. Our plan is that I'll increase his medication on those days, and that we'll try to shorten his day to 6 hours. Our kids will pick him up early as many days as possible so he's out of there before his sundowning ramps up, and before he gets worried when other participants start to go home. When the kids can't do it, I'll have to leave work early. I'm hoping he won't be too difficult for the kids - and I'm hoping our plan will work.