January 2, 2023

Where did December go? For that matter, where did 2022 go? So here we are in 2023. I think this year will be one of change, and I have a rather ominous feeling about it. John's Alzheimer's seems to be progressing rapidly right now, so I worry about what 2023 will bring, and the difficult decisions that will need to be made. But nothing with Alzheimer's is predictable, so only time will tell. Last night I dreamt that I lost John in a crowded downtown hotel. It was pretty terrifying, and when I woke up, despite a frenzied search, I still hadn't found him. We saw all the kids at Christmas, with the exception of Tim and his family in Japan. We facetimed with them a few days before Christmas though, on John's birthday. Ben hadn't been home in a year, and I underestimated the degree of change that he would be jolted with. On Christmas Eve, late at night, Ben and I had a long talk and a long cry. He said he sees how oblivious his dad is, how much loss there's been this past year. I said I feel guilty that I hope John doesn't live too long. Ben gasped and immediately said "No! Don't feel that way! He wouldn't want to live like this!" We cried. Ben worried that meds might be prolonging his suffering, but no, the meds only treat symptoms, they don't slow the progression of the disease. We talked about care options - expensive and pretty worthless. Ben may move back here in a couple months, and would like to help care for his dad. While I'd love that, I also don't want our kids involved in the drudgery of day to day caregiving. Helping out is one thing, getting deep into the ugly daily grind is not what I want for our kids. I think it's a parent's responsibility to provide for our own care, and not be a burden to our kids. Hopefully that will be possible. A few weeks before Christmas John's caregiver at EasterSeals was out sick and missed 5 days of work. Because Edna wasn't there with John, the other workers there had increased exposure to John. He's lost when Edna isn't there. He thinks no one listens to him and he gets mad. The director was increasingly worried about John and told me he was walking around all day like a zombie. If someone spoke in a loud voice he would yell at them. (Tone of voice is very important to him.) The director is concerned that John is no longer appropriate for their program (that's inevitable, but I'm hoping we can delay that as much as possible - it delays far more expensive care). Edna continues to tell the director that she can handle John and that he's fine there for now, so hopefully that will work for a while. Recently Edna told me "I'm a friend first, not an employee at EasterSeals." Wow. She is such a blessing to us. And she plans to help us in the upcoming phases, and I believe she is delaying her retirement to do so. She's an amazing person. In the meantime I spoke to John's psychiatrist and confessed that I had already upped his medication dose. After discussing it, we've switched his seroquel (an antipsychotic) to an extended release formula, then we can give the more immediate release formula as needed, especially in the afternoons and evenings when sundowning hits. John has lost quite a bit of his peripheral vision. He doesn't see things unless they're right in front of him. This is the brain's way of focusing the ability it has on a smaller area. It can't handle too much information, so it narrows the scope to what it can handle. John has more difficulty dressing now. With help, he'll take off his clothes to get ready for bed, but then puts them right back on again. Recently he's taken off his shirt, then tried to put it back on like a pair of pants. That's happened a couple times. I find myself telling him what to do at every turn. Without instruction, he often doesn't know what to do. He doesn't know which car door to use, he doesn't know where to put his things, he doesn't know when to use a fork, he doesn't know whether he's home or not. Fortunately being bossy comes pretty naturally to me;) Alzheimer's is so unpredictable. It varies from day to day, and person to person. Currently John's memory lasts only for seconds. He likes to help, but I have to be patient when he helps because the task takes longer. Things slip away in waves. The skills come and go for a bit, then start to go more than they come, then disappear all together. Skills fade away, and suddenly I realize they're already gone.