January 16, 2023

This 3 day weekend was ... unsettling. John was clearly sundowning each afternoon beginning around 2:00. Each day I ended up giving him an additional seroquel pill to help calm him down. That seemed to help some, but it all makes for a difficult day. He's quite agitated from about 2:00 - 8:00, when he goes to bed. If we're out and about, whatever we're doing seems to distract him from the agitation. But when we're home, and I'm trying to get things done around the house, he starts yelling at me and accusing me of not taking care of him, of not listening to him, and for doing the wrong thing in general. On Saturday it was pouring rain outside. He was griping at me, complaining that I wasn't helping him, that I wouldn't get ahold of someone to help, that I wouldn't take him home, and that I wouldn't take him to see his parents. After a bit he turned from me and started yelling at his reflection in the mirror. He yelled "I've been watching you! I see that you're not helping." Then he continued to accuse his reflection of the same things he accused me of. This went on for quite a while, maybe 15 minutes. So very strange. He told me that he needed to go home, he needed to talk to his parents. He was surprised to learn that they're dead, but not really sad about it. It was weird. More and more he wants to go home to see his parents. I wonder exactly what part of his life he's clinging to at that point - maybe his teen years. Or maybe younger. The next day John yelled at the man in the mirror again, but not quite for as long. The main difference from the day before is that John yelled at the reflection for "throwing him in the trash". He sometimes accuses me of that. John said to me "I've gotta get home. How can I get to my house?" I expained that we were home, but he didn't believe me. He also said that he needed to see a doctor. He said "there's a pain right here" pointing to his foot. I suggested that he might feel more comfortable if he took his shoes off, but he thought that was a ridiculous suggestion. Today I spoke to a MediCal Requirements Specialist to see if there is anyway we can get financial assistance for John's care. The OC Resource Center paid for the consultation. I spent a few hours last week completing the financial forms they sent me. The Specialist said we do not qualify for any in home care reimbursement based on John's retirement income. But the rules for how assets impact qualification for Residential Care Facilities are supposed to change in January 2024. I'd either need to spend some of our assets down to possibly qualify this year, or wait until 2024 to qualify. The key seems to be that he would need to be placed in a Nursing Home of some type, one that has doctors and nurses caring for residents, rather than aides. I think that rules out Board and Care homes or Assisted Living/Memory Care places (the types of places I've begun to look at). John would need to have more physical issues to even consider that (requiring assistance standing, getting in and out of bed and chairs, etc). And the places need to accept Medi-Cal. I think many of those places don't easily take on new Medi-Cal residents, so she said she encourages people to initially go there as 'private pay' then later switch to Medi-Cal so the places are kinda stuck accepting that. The Specialist also suggested I talk to an attorney about a 3100 Petition. I think that means I would petition the court to have me (rather than him) legally accept John's retirement and social security income now, so that he could qualify for more assistance sooner. I really should have had someone else on the call with me to help me understand and remember all the details. I assumed she would tell me we weren't eligible for much and that it would be more cut and dry. It's definitely not easy for us to become eligible, and it's certainly not cut and dry. It's all very complicated. I took notes so I'll need to research those things more to deepen my understanding. It's at times like this that I wonder how the general public is supposed to navigate all this stuff. It's absolutely insane.

January 7, 2023

My niece Lily and her boyfriend Cody (and their 2 pups!) came to our house to work on a massive project - organizing John's comic books. We didn't know how many he had, and my estimates were way off. It turns out John has 60 long boxes of comic books, and each box holds about 200 comics. So he has about 12,000! They fill about 1/3 of a good sized bedroom. John always maintained that his comic books were all pretty new and weren't worth much. Turns out that might not be correct. Lily has mad organizing skills, and Cody knows a ton about comic books. He'd pick up a comic book and tell us that it was an important one because it was the first time Superman wore a black suit, or it was the first time a new character appeared. Between the 2 of them, we were able to accomplish a huge task. Before we knew how many books John had, we thought it would take 2 days. Well it took almost 4 full days. We mostly sorted the books by characters, and pulled out older comics for further research. I helped, and so did Jordan and her boyfriend Perry. Lily and Cody worked constantly for 4 days, and the rest of us jumped in between other obligations. By the end of it, all the comics were back in long boxes, labeled by character or topic. And now we know what's in that collection. The goal is to sell the comic books - heaven knows I don't want them! The money can be used to help pay for a litlle of John's care. We were very concerned that John would be upset when he discovered we were in his comic books. Initially we only worked on them while he was at EasterSeals. The second day I decided to see how John handled it. As it turned out, he didn't mind. He watched what was happening but was far more concerned about what the dogs were doing than what we were doing. He didn't understand and he wasn't worried that we were in his space. If we did this before he got sick, he would have been very pleased. We often talked about organizing all the comic books, but it was a daunting task so we never did it. Plus he would have loved to see what he had in all those boxes! And he would have loved to talk to Cody about it all.

January 5, 2023

This morning we had a zoom appointment with John's neurologist. These appointments occur every 6 months, but because the disease is in a more rapid progression, our next appointment will be in 4 months. Once I brought the doctor up to date on what's been happening, she gave John the MMSE exam. That's the 30 point test that gives a general idea of his cognitive status. 6 months ago John scored an 8. Today he scored a 4. That is an extremely low score. Any score less than 10 indicates severe cognitive impairment. He was unable to tell the Dr what state he is in, what the month and year is, or where he was at the time of the exam (in our house, in our bedroom). He was unable to repeat 3 words in succession (apple, table, yellow) - but he got the first 2, and was unable to follow verbal directions (pick up a sheet of paper, fold it in half and pass it to me). However, he was able to read a simple direction and complete it (touch his nose). However, the doctor said John's low score isn't completely tied to his cognitive ability because the results showed that he's affected by a receptive language deficit. That means he has trouble understanding what is said to him, and that he has more Aphasia than he did before. He has difficulty understanding verbal instructions, especially compared to written instructions. She said it's better to use visual aids and cues when asking him to do something. So rather than directly asking him to do something, I need to show him how to do a task. I realized that I've been doing this to some degree. When I need him to brush his teeth, I brush mine too. I do have to prompt him to do most everything now. I hear myself instructing him in all ADLs (activities of daily living - activites related to personal care like bathing, showering, dressing, eating, etc.) I feel like I'm barking instructions all the time. Now I'll make a point to provide cues whenever I can - hopefully barking less and showing more. We also discussed the MRI results again from last summer. The Dr showed me the loss of brain volume in the hippocampus and the language center, as well as other parts of the brain. With Alzheimer's the brain shrinks and the ameloid plaques and tau tangles increase, effectively gumming up the brain. So not only does the brain shrink, but the ameloid plaques clump together and collect between the neurons and disrupt cell function. Then the tau protein stick together and form tangles that block the neuron's transport system cutting off the communication between neurons. So it's a big ugly mess in the brain. That's my scholarly conclusion anyway;)

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.