September 27, 2022

Yesterday Edna told me something disturbing. She took John to the bathroom - she needs to go with him now, so she can remind him why his there, and help him wash his hands, reminding him to use soap. This time he attempted to pee in the trashcan. She was able to stop him in time and redirect him. But still, left to himself he would have peed in the trash can. I suppose he thought the trash can was a urinal. I think it's a telling sign of where he's at now. A disturbing sign.

September 24, 2022

Recently John told me he wanted to call his mom and dad. I responded that they were in Heaven. I said my parents are in Heaven too, and I wondered if they spoke to each other about us. He asked when that happened, when his parents died, and I told him. He got quite angry that no one told him his parents died. I explained that it had been a while, but that he was at the hospital when each of his parents passed. I told him I knew his parents were proud of him and happy that he was nearby when they passed. The other day he was ranting and raving about how little was explained to him, and that I wasn't helping him. He was pretty angry and stomped around the house griping that I wasn't looking out for him, and that I didn't understand or listen to him. I asked him how I could help him, and in response he yelled "Get a boyfriend!" That was odd! Lately I've noticed that he's started putting on one of his socks upside down. Once he showed it to me and said something was wrong. I fixed his sock and then he put his shoes on. Sometimes he's able to tie them, but I need to retie them so they're tied tightly, and I knot them so they stay tied. Edna at EasterSeals mentioned that John is losing his peripheral vision. I remember when that happened to my mom. Essentially the brain can't process all the information that the eyes see, so it narrows the field of vision so it can handle the input. The brain narrows the field of vision to what it sees directly in front of it. I hadn't noticed this myself, so I'll be watching for it. Edna said she noticed it while he was eating. He couldn't see his glass unless it was right in front of him. I was talking to my aunt earlier today. She's my mother's sister and always says things that resonate with me. She often listens to what I say, then summarizes it with insight I hadn't noticed on my own. Anyway, today she told me about a friend of hers whose husband had Alzheimers some years ago. In one of his more lucid moments, her friend asked her husband what it was like to have Alzheimer's Disease. He said it was like wind blowing through his mind. That really struck me. It seems true on multiple levels. Later today I was talking with another family member - I told him I really appreciate his honesty and candor about John. He observes what's happening and doesn't attempt to sugar coat it. I'm comforted by the attention he shows John, and he's honest about what he observes. I know John is truly seen by him, and it makes the journey a little bit lighter to be understood.

September 10,2022

John doesn't complain about wanting to drive very often anymore. I guess I can't think of the last time he did that. In general he's more compliant now. He doesn't fight things as much. But his memory is extremely short. He's confused much of the time and and worries more - he worries about random noises in the house. When we leave the house he worries if he has the things he needs. He worries things are missing. He's just worried. I've been out grocery shopping with John a few times recently when he grabs any random cart and starts pushing it around. I've discovered it quickly so at least we could return the cart to the place he got it, usually without the person knowing their cart disappeared. The other day at the grocery store he even started pushing a little display island that was on wheels! He asked me where I lived the other day. I wasn't sleeping well the other night and got up and wrote this - take my late night musings for what they're worth: I want this journey to end. It's not that I want John to die. I absolutely don't. But I want his suffering to end. I want this gray emptiness of a life to end. I want him to feel love and I want him to love others. I want him to believe in his children fiercely like he used to. I want him to value ethics as he always did. I want him to honor God. I want his mind to be curious. I want him to remember how wonderful his life has been. I want him to feel hope for the future. For our future. For our kids' futures. I want his vitality and strength. I want to hear his dumb jokes. I want to argue with him about any stupid thing. I want his life. Not this fucking empty shell.

September 3, 2022

I've notice a couple interesting things lately. 2 or 3 times John has put his tennis shoes on without socks, even though socks are sitting near his shoes. He occassionally is able to tie his own shoes, but when he does he ties them loosely so they come untied very quickly. Now I tie (or retie) his shoes every time, making sure they're tied properly and knotted so that they stay tied. Last night Jordan brought John back into our bedroom. I believe he got up in the middle of the night to pee, but was wandering around the hallway, unable to find the bathroom. Our dog heard noises in the hallway and started barking, and that's what alerted Jordan to the situation. Once I was awake I showed him the bathroom and after that he was able to sleep again. John's ability to sleep is a huge gift. Sleep issues are very common with Alzheimer's patients, so I'm fortunate that he sleeps so I can sleep too. The other night I was walking down a sidewalk like a normal human ... when I tripped over nothing and fell on my face. I scuffed up my chin and now have a large, dark, purple bruise on my chin. Super attractive. Anyway, this morning I asked John to look at my face and tell me if he noticed anything. He said 'No, it looks good.' To be clear, you can't miss the massive bruise on my face - - but John can. That seems really weird to me. It's so obvious, but he can't see it. Recently I contacted the Council on Aging to see if there are resources available that I'm not aware of. Basically I asked if there is anything I don't know. Their main recommendation was to contact the OC Caregiver's Resource Center, which I did. We spoke for some length and I was asked a bunch of questions. At some point I realized they were helping me apply for a respite care grant. The grant I received is for 40 hours of care to be used in September. Caregivers currently cost $32 - $35 per hour. This week we had our first caregiver come to stay with John while I went out in the evening. (By the way, that's when I face planted! Figures I fall during my first night out!) This guy will come each Thursday night in September. He was very nice but totally shocked about John's age. He walked in the house and we introduced ourselves. He then asked who he'd be helping. I pointed at John and he was clearly surprised. He said most people he took care of were in their 80s or 90s. I explained that John didn't need physical assistance, but needed help with dinner and couldn't be alone. When I walked out the door John was busy showing him his office and all his comic related stuff. When I returned a few hours later, one interesting point the caregiver made was that older TV shows, and especially black and white shows, often capture and hold the attention better of Alzheimer's patients. There's less stimulation and motion for the brain to deal with. That makes sense to me so I'm going to give those types of TV shows a try. The purpose of caregiver grants is to make sure the caregiver stays healthy while caregiving. Respite for the caregiver is intended to provide a break so you're able to continue caregiving. Just after I received the caregiver grant I read this in "Passages in Caregiving" by Gail Sheey: "You have a crucial choice: go down with your loved one, or make a conscious effort to come up for air and reconnect with your transports to joy. You can't just walk away from your loved one. A long vigil still lies ahead. But you must move. You must begin Coming Back before you begin saying goodbye. The alternative is to lose yourself. When you oversee the deterioration of someone you love, the process keeps washing away the 'me' that once comprised half of'us'. The longer this erosion of self goes on, unless the caregiver makes an effort to come up for air on a daily basis, the harder it is to return to those dreams that were shared with the individual... At some level the caregiver feels anger and resentment, but it can't be expressed to the loved one, so it spills out elsewhere. Coming back requires going out into the real world for at least a quick sampling every day, and for a daylong break at least once a month." So I'm giving it a try.