September 26, 2021

This week we had an appointment with John's psychiatrist again. We agreed to give Seroquel a try. It's an anti-psychotic that is used fairly commonly with Alzheimer's. We haven't seen any significant change from other medication modifications we've tried, so we're giving this one a try. He's on the lowest dose and has taken it for 2 days now. I haven't seen much of a difference yet, but we'll see. A side effect is drowsiness but so far that hasn't been an issue either. We'll give it more time. One weird thing that sticks out to me this week - John asked me "What happens if there are bugs crawling into my brain?" I assured him that there were no bugs around us and that nothing was crawling into his brain. Still, it's certainly off-putting. Since John is so agitated in the morning, and both Jordan and I have trouble getting him out of the car at Easter Seals, they are going to try come out to get him to see if that helps him with the transition. We also have trouble initially getting him into the car. He usually is angry that he doesn't have his own car and thinks he needs to spend the day working on getting his own car. I tell him both our cars are his and that we share the cars, but it doesn't help. Edna at Easter Seals says she's noticed that he's getting worse more quickly now. She's taking him out on Thursdays - they spend the whole day in the community. They've been playing raquetball in the park, have lunch, then go to the movies. This week he worked up a sweat playing raquetball and needed to change his clothes. Edna sent John to the bathroom 3 times to change his clothes. Each time he was in the bathroom for about 10 minutes, but never changed his clothes. One time he went to the bathroom while in the bathroom, but apparently didn't use a seat cover. He was very concerned about germs because of this and spent the following 2 days worrying about it. He showered a few times over it, but he sees no need to use soap. Water only. Then he's really annoyed when I wash him with soap. The repeated showers had no impact on the germ issue however. He remembers the germs but doesn't remember showering multiple times to clean off the germs. John does better when he's busy, but it's difficult to keep him busy when I have household things to get done. He's is much calmer when other people are around. He somehow knows to act more appropriately. But when it's just me and Jordan, he unleashes his frustration on us. We are both targets, but of course me more that her. Everything we do upsets him. We damage his hearing when we make a bit of noise putting a plate on the counter. Or when we talk to the dogs. Or when we can't find something he's recently moved somewhere else. He's very critical of everything - things we do, or things we don't do. We make too much noise. We don't understand what he's trying to say. I make him take his medications when clearly they're killing him. I put deoderant on him. I tell him he shouldn't wear a flannel shirt when it's 90 degrees outside. The list goes on and on. We understand he's frustrated and yearning for independence, but it's difficult to be on the receiving end of his crticisms and negativity for hours every day. Hmm.....maybe I should try some of those weed gummies I got him!

September 19, 2021

About a week ago, when Jordan was taking John to Easter Seals, John refused to get out of the car. He was making her late to class at law school, and she called me in frustration. I tried to cajole him out of the car, which worked for a bit, but before he got into the door at Easter Seals he turned around and got back into the car. It was a really frustrating time. He was busy complaining that he wasn't sure he had the things he needed for the day and was angry that we weren't providing what he needed. He finally got out of the car again and made it through the door. Meanwhile I was arriving at work, late and frustrated. I jumped out of the car and tried to lock the doors, but they wouldn't lock. Until I realized the keys were still in the car and the engine was still running! Thankfully the car is smarter than me and prevented me from creating a fresh new problem for myself. Sheesh! A bit later I realized that I hadn't even parked in my assigned parking spot at work. That wouldn't be such a problem except that we have limited parking and I took an extra spot from someone else. So much for thinking clearly - if at all - when I'm frustrated. Yesterday John went hiking with his brother and one of his sisters and had a really nice time. The weather was wonderful so I was tempted to join them and get a little exercise myself, but opted to snag some valuable alone time instead. It was nice to go about my Saturday morning chores and get a few things done without his repeated questions and accusations. Plus when he has things to do on the weekends he is a much happier person. I'm thankful for every break I get - even when it gives me a little FOMO!

September 5, 2021

My dad died 3 years ago today. I remain convinced that caregiving killed him. He took care of my mom as she declined, at great personal cost to himself. I suppose he wouldn't have had it any other way. However, about a week after his death, we drove my mom to California and placed her in a memory care facility near me. My dad's death was pivotal in my life for many reasons beyond the obvious, but also because it triggered a shit show in my life. I started taking primary care of my mom, and John's decline continued at it's slow pace. By the time my mom died (the 1st anniversary of that is later this month) John's dementia had progressed to the point I could no longer leave him home alone. Plus the pandemic which added to the isolation. Now John's frustration and aggitation rule the day. So the last 3 years haven't been pleasant. But they've flown by in their own twisted way. All that whining stated, I continue to try to chose joy each day. I try to laugh at our crazy. I try to remember that the hard times in life don't last forever. I just need to take it all one step at a time, all the while mumbling bad words under my breath. Or out loud! Now it's time to get back to enjoying this 3 day weekend!

September 4, 2021

I mentioned to John again that we're married. He said 'We are?' I explained that we've been married for over 30 years. Then I told him he was married before me, back in the 80s. He didn't think that was true. I explained who his ex-wife is, and told him she is Tim and Danielle's mom. He was surprised to hear that, but he seemed to think about it on and off for a while. A bit later he proudly announced that he was remembering some 'bits and pieces' about that, while tapping the side of his head. Later Danielle came over with Baby Jorge and she showed her dad some pictures of her mom. It didn't seem to strike his memory, but he said he remembered. He's even mentioned it a couple times since then. It's strange how sometimes a thought can stick with him, and other times it seems like nothing sticks. However he's certainly hyper focused on 'getting his life back', getting 'the tools he needs' and buying a car. He's obsessed! He's constantly annoyed with me that I don't put him in touch with the right people to make those things happen, or even make them happen myself. The other thing he says is that he needs to paperwork to find out about things. It's always about the paperwork. For example, if I would just give him the paperwork then he'd know how to adjust the water temperature in the shower! Yesterday Edna (from Easter Seals) took John and their friend Cliff (Who's 104, blind, but still quite sharp! He fought in WW2 and ran marathons long into retirement.) to walk at the beach, then have lunch, and then after dropping Cliff back at his house, go watch a movie. John obviously had a great day, but I'm not sure they saw a movie after all. John says they didn't - but he's not the best historian! However, it was exceptionally thoughtful of Edna to do that. Easter Seals was closed yesterday and she knew that would put us in a bind, so she spent her day off with Cliff and John. That woman is amazing!