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!