January 20, 2022

I'm noticing that John requires more and more guidance with relatively simple tasks. This morning he woke up and said 'I have to pee. What do I do?' I told him to go to the bathroom and use the toilet. He did. But as he often does these days, he stays there until I tell him to move on. Also, he rarely flushes so I have to keep an eye on that. He's been confused about brushing his teeth. The upside to this is that he's been brushing a little longer while he waits for instruction. This is good because the dentist said he wasn't brushing very well. John seems to skip his top teeth without a reminder, and he's confused about when to spit and when he's done. He also wants to eat most foods with a fork. Like a hamburger. It's not easy to eat a hamburger with a fork! I try to offer guidance, and when I'm eating the same thing I show him how I use my hands to eat that type of food. I've also noticed that he drinks more fluids if I pour them into a glass (rather than using a can or a bottle of water). He turns on all the lights, but never turns them off, and can't seem to figure out how to turn them off. Or he can't figure out where the switch is. That's so strange because he has no trouble finding the switch to turn the lights on! The worst is when he turns on the bathroom light in the middle of the night then crawls back into bed - and I have to get out of bed - groaning! - just to turn off the light. John wants to help, and often offers to help me. And he tries to help. But it typically requires a lot of guidance so it requires me to be patient to accept his help. It's funny when he helps me fold laundry. He'll 'fold' one shirt then wander off, happy with his accomplishment. Then I refold the shirt that he left essentially rolled up. He takes less stuff out than he used to. He used to unload drawers and shelves and spread the contents out so he can see them. He still does a little of this, but not nearly so much. So there's less cleanup for me as far as that goes. The other day John had the hiccups. He was genuinely shocked each time he hiccupped! He said 'This could be bad. This is really bad. I need to see a doctor right away.' I explained that everyone gets the hiccups sometimes and that they're harmless. He didn't believe me, but thankfully his hiccups passed quickly. Easter Seals has continued to be closed due to the Omicron Covid variant. Amazingly, they continue to make every effort to support us. Edna comes to our house each day and the 2 of them work on things in the house or they go out into the community (to the park, the movies, out for walks, and out for lunch). Edna said that John focuses better when they're at our house, with fewer distractions from all the people at the Easter Seals location. They read his Marvel and DC comic related books and talk about it. Edna says he participates better because he's so interested in the subjects. Meanwhile I tease Edna about her deepening knowledge of comic book characters. I told her that if she gets dementia someday that the only thing she'll remember is comic book characters! Edna also said that they've been looking through our photo albums and they talk about different family members and our vacations. She tries to jar his memory and exercise his brain. They play Jenga, do simple puzzles, and practice writing his name. She says that when he gets antsy and starts getting up and walking around, she'll rope him back in with some comic book talk! This home and community involvement has been working so well that Edna provided all kinds of positive feedback to the director of their program. The director is now planning to start a hybrid program based on John, and John will be the inaugural member. He will probably spend 2-3 days per week at the center, then 2-3 days at home and in the community. I think that will keep John from getting bored, and will accommodate some of our scheduling issues as well. He'll get the interaction he needs at the center, and the opportunity to exercise and focus on learning when he's at home or in the community. The flexibility is outstanding. Once again, Easter Seals never ceases to amaze me!

January 7, 2022

Last night, after a pretty good day, John asked me where I lived. I said 'I live here.' He said 'We live near each other.' I asked him who I am. He said he couldn't remember because there's too much going on. Then he suggested that maybe it's time for me to go home. I said again that I live here with him, and that we are married. 'Really?' he said. I showed him a picture of us at our wedding. He didn't remember it but commented that it was a nice picture. Then he responded with conviction 'I try to never hurt anybody', and I agreed with him. Then a short bit later he again told me that I could go home now. He said 'You're a very nice friend.'

January 3, 2022

Because of the Omicron covid variant, Easter Seals decided to close this week. After 5 days of being with John constantly, I was disappointed but certainly understood. Fortunately I'm off work this week so the timing worked well for us. But it deserves mention that when I received the call from the Easter Seals director, she thought I was at work and she immediately said that Edna would still be available to help John even though the program was closed. That's how amazing they are! Even when they close, they're still available to help us! Meanwhile, I'm trying to be patient with John. When you gear up for a break, and then the break doesn't come, somehow it's worse than if the break was never coming! I've already canceled a spa afternoon that I had planned with a friend later this week, but that can be done another time of course. We still have some appointments and plans for other days this week, so we'll stay busy. John really goes crazy when he's not busy. And that drives me crazy! I think John liked all the activities that come with Christmas. He was quieter than he's been in the past, but still happy to see people and have things to do. Ben and his girlfriend came to visit, and John really liked seeing Ben again. Ben noticed that his dad is less agitated than he was before, so I sang the praises of Seroquel. Numerous times each day John takes attendance. He wants to know who is home, or how many people are in the house. He often asks if people are coming over, and is disappointed when nothing is planned. He is easily bored, and when he's bored he seems to wallow in dark thoughts. He talks about needing to 'go somewhere', and announces he'll be dead very soon. Sometimes he asks how soon he's going to die, and I tell him that he's not dying any time soon, and neither am I. If he's not being too negative and I can tell he can take a joke, then I tell him that he'll only die soon if I kill him, so he'd better watch out!