October 22, 2022

There are some common Alzheimer's behaviors that John does frequently. One is speaking in a word salad. That refers to nonsensical words. He uses real words, but they don't make a lot of sense when he puts them together. He uses a lot of pronouns and often uses a tone that sounds like he's adding something significant to the conversation - but then it doesn't make any sense. Another common behavior is sundowning. That describes episodes of behavior and psychological symptoms of dementia occurring late in the day. I've noticed he gets more agitated in the late afternoon or early evening. Often I pick him up from EasterSeals and he's happy. Then we get home and he's angry. One thing that happens most days is that we pull into the driveway and John gets out of the car so I can pull into the garage (there's not enough room to open his door once we're inside the garage). He gets out of the car, and then asks what he should do. I tell him to shut the door so I can pull into the garage. Instead he tries to get back into the car and then shut the door. We might run through this scenario 4-5 times. By then he's piping mad (so am I to be honest) and yelling at me for not giving him the information he needs. Edna also commented that she's noticed that he gets frustrated each day around 3pm. The behavior that really drives me nuts is called shadowing. Shadowing is when someone with dementia follows their caregiver around. I've read that this behavior may be due to anxiety. He may be disoriented to where he is, but knows that I am a safe person. It's possible that being unable to see me is scary to him. So being around me probably reassures him and brings him comfort. Another theory is that the behavior is grounded in a lack of purpose. John doesn't know what to do, and I look busy and productive, so being near me helps him to figure out what is happening next. But shadowing is exhausting for caregivers. It drives me crazy that I can't get a task completed without him getting in the way. I might walk to the next room to grab my phone, then turn around to head back to what I was doing - but I run into John because he's following me, and I can't get around him to finish my task, and he's walking slowly. This happens so many times each day. I holler at him 'don't follow me, I'm grabbing my glass and I'll be right back!' Then I grab my glass, turn around, and then almost run into him. He's with me almost constantly until he falls asleep. No breaks, little privacy, and so many questions repeated again and again.

October 9, 2022

When we needed to place my mom in long term care, it was unexpected and we had no time to research options. We found a place based on a personal recommendation. When we arrived to move her in, I saw the place for the first time. Fortunately it worked out well. I'm beginning to think about what might work best for John, and this time we have plenty of time to do some research and visit various options. We aren't ready for this move yet, and I imagine it's probably a year away, when he no long qualifies for EasterSeals and we'll need help. I assume he'll be incontinent by then, and difficult to manage. He's difficult to manage now, so I'm not sure what that means, but it won't be pretty. Last weekend we visited a couple places. They're fairly new and modern, and one stood out above the other. I do think it's a better match for us, but also the woman we met with was excellent at her job, and that makes a difference. One thing that she said resonated with us - she said that when families make the difficult decision to place their family member, they discover that the quality of everyone's relationships improves with long term care, including the family member. She pointed out that we no longer have the fight the battles, and we can return to our core relationships. I would no longer need to be the caregiver, fighting daily battles to get him dressed, fed, etc. I would - and John would - be able to be husband and wife. Our kids wouldn't have to take care of their dad anymore, but could have healthier relationships with him. Of course it wouldn't be the same, but it would be better. The place we liked has a more simplified billing structure than the other one did. Rather than paying for each incremental care requirement (help feeding, help walking, help toiletting, etc) they have flat rates. The current rate is $11,000 per month. Yep, per month. It's insane. Board and Care facilities are less expensive. The atmosphere is more homey, but there's less stimiulation. Both have their advantages and disadvantes. Of couse we have a lot more research to do. I don't know where we'll land in this process. And it's a gamble as to how long we can pay for any option. It is prohibitively expensive and there is absolutely no coverage from Medicare. Private insurance (which we don't have) or Medical (for which we don't qualify because we're uber rich apparently) are the only real sources of assistance for some of the population. So it's cash out of pocket. But at least we've started to look into options so we can begin to formulate ideas and plans. On a different note, a friend of mine shared some insight about John. He said "I find it fascinating how his personality, mannerisms, and speech style seems like it was, but there are a lot of things missing, not just memory. Some things are like artifacts, like him carrying around the law book when I was there, knowing it was important but not really knowing why. He's the same person in some ways but not in others." I've been reading a book about a journalist who for research worked as a caregiver in a memory care facility. (It highlighted to me how extremely hard those jobs are, for pathetic wages - they start at minimum wage, so they make less money than they would at many fast food restaurants. It's something I asked about at the places we toured - how do they motivate and retain employees when they're paid so poorly and worked so very hard? Happy employees provide better care to residents. Overworked employees can only give so much to the difficult people in their care.) Anyway, one of the things the author of the book talks about is the activities that are provided at the care facility. She said "for all its comfortable furnishings and sunny skylights and pretty parakeets in cages, it would be a grim place indeed. There is more to life - even life with Alzheimer's - than a dry diaper and a hot meal. Activities create their own kind of energy. They are both an anchor to reality for the people who live there and an escape from institutional boredom. Music especially seems to connect with so many of the residents." The author also writes about the process of dying, a process that is familiar to those providing long term care. She said "dying is part of the awful progression of the disease. The plaques and tangles clog the brain enough to impair memory and judgement, then cognition and communication, and finally the ability to remember and execute the simplest of tasks like eating and swallowing." But then she shares a nonclinical view of death that was explained to her by a hospice nurse. The nurse explained that "the body knows it is dying. And it knows it doesn not need to take in nourishment for this task. In fact if nourishment is taken, the energy is diverted to digest the food. And for what? For staying alive. That's why she believes a person in the process of dying refused food, stops chewing, stops swallowing. It has little to do with dying." The author goes on to say that "this is the wisdom of the body. Death is the silent, purposeful act of a wise and ailing body, not a jarring event but a transition, a process." Interesting food for thought.