December 21, 2021

After doctor appointments this week with both the Psychiatrist and the Neurologist, we've decided to make some medication changes. We're upping the seroquel dose from 75 to 100mgs per day, but are splitting it so he's taking half in the morning and half in the evening. The hope is that some of the relief from the evening dose will still be impacting him in the morning, so it'll help the morning agitation before the morning dose kicks in. In the future we will probably switch to a timed release formula so that it's continually active. We're dropping Aricept/Donepezil. That's a memory medication that doesn't do much for the majority of people. I'll watch to see if there's any change in memory as a result. It's typically the first medication that is given for memory loss, but it doesn't have a great track record. I remember way back, before John was anywhere close to a diagnosis, but was discussing his memory problems with our doctor. The doctor prescribed Aricept. I remember he said that if it helps, it's not a good sign, because that probably meant he was in early stage dementia. I don't remember if John felt that it helped then. Over the years he's been on and off of it a couple times. I do remember an uptick in cognizance at one point when we restarted the medication, but he was angry and frustrated by it. So we'll see what happens now, if anything. We're continuing Namenda, a medication that is usually prescribed once dementia has progressed to the moderate stage. The Dr said that some studies show it actually slows the progression of the disease, so she recommended that we continue that one. I agree. I'm not a fan of extending life when the quality of life sucks. My goal is to improve John's quality of life wherever possible, but I don't want to extend misery. I wouldn't want that for myself, and I don't want that for him. I discussed that with the doctor, and she is supportive. But I don't think John is miserable now. He's confused, frustrated, agititated and generally unhappy, but not miserable. He still finds joy. The Neurologist also gave John the MMSE - the Mini Mental State Exam. It's a simple 30 point test that measures cognitive function. Today John scored a 10. 6 months ago he scored a 12. That's a typical drop for that time period. (A score of 20-24 suggests mild dementia, 10-19 suggests moderate dementia, and scores below 10 suggest severe dementia. But I've also read that anything below 12 suggests severe dementia. The Neurologist pointed out that what is important is daily life skills - dressing, eating, toileting, etc. The longer those skills are present, the better the quality of life. So we focus on quality of life, and maintaining life skills as much as possible.

December 18, 2021

Today a few of us got together to celebrate John's birthday. Just 6 of us, all family, at our house. Near the end of the evening, John said a few times 'I'm failing.' I think he really meant 'I'm fading.' That's something he's always said when he's tired. So he was ready to go to bed. Then he said a couple times to me 'Let's go. It's time to go.' I told him we were at home and he could go upstairs and lie down if he was ready. He smiled awkwardly, laughing a little when he realized that we were in our own living room but that he didn't know it. I think this exchanged happened 3 times. It's becoming more and more common for him to say things that illuminate his confusion. I think he used to be better at hiding it, but as his brain fogs he's less able to hide it, and less aware of his need to hide it.

December 17, 2021

Today is John's 64th birthday. As I dropped him off at Easter Seals this morning, I reminded him that it was his birthday and they were going to celebrate it today. I'd already dropped off a bunch of cupcakes for their party, and he was also going to distribute Christmas gifts for each of the staff members - 20 of them! (They each got a Mimosa Bar - a bottle of prosseco, and 3 little juice bottles.) John was getting out of the car and I wished him a final "Happy Birthday" when he stooped back down into the car window and said to me with an appreciative smile "You're a good sister!"

December 16, 2021

Breakfast has become an issue recently. John has been taking forever to eat. He stares at his food, not eating it, or takes really small bites. He typically eats a gross hot pocket for breakfast, despite being offered better options. I thought maybe he's getting sick of hot pockets (finally!). But I've given him a few other things and the story is the same. Meanwhile I get increasingly aggitated myself because I need to get to work. One day this week he was really upset about breakfast. He said something strange about killing children, and me making him kill children. It was really weird. It seemed like he was associating killing children with eating his breakfast. I whisked the food away and moved on with the day, distracting him from those horrible thoughts. He hasn't mentioned anything like that again, so maybe it was some strange day dream. Still, it was kinda scary. He hasn't refused to eat at any other time of day, so at least the eating issue is limited to the mornings. At least for now. I'm not sure if I've mentioned this before, but he's been afraid to go outside after dark. Or he's afraid for me to go outside after dark. If I step out the front door to get the mail, he feels it's necessary to go out with me to protect me from animals or any other danger lurking in the night. The irony of it is that if there really was something dangerous out there, he'd make it more difficult because I'd have to protect him as well as me. He means well, but he's really no help at all! It's sweet, but annoying. My quick trip to the mail box ends up taking twice as long because he moves rather slowly while I'm trying to rush about. The same thing happens inside the house too. I hurry from room to room, and he follows me. Then I turn around and practically run into him! We do look like a pair of idiots!

December 7, 2021

Tonight while I was cleaning the kitchen John asked me a few times in a row "Where is Susan?". I turned around and asked him "Who am I?". He immediately replied "My mom". I responded "I am Susan" and he said "I knew that".

December 4, 2021

Edna (from Easter Seals) and I were talking the other day about how short John's memory is becoming. An example is that I might ask him to go upstairs, pick up our dog Parker and bring him downstairs. John will occassioanly be able to do it, but usually can't remember what he was supposed to do, or is distracted by something else. Edna said she has to ask him again and again to accomplish tasks at Easter Seals. He also has become increasingly paranoid. He is scared outside at night. He is also very concerned about my safety if I go outside after dark. He follows me to try keep me safe. While that's sweet, if any danger were to occur, he would have complicated the situation because I'd have to protect him instead! Recently he said 'I don't have anybody who makes sure things are done right. I guess I just don't like me.' This morning he got up early (so much for my plan to sleep in!) and went to the bathroom. On his way there he asked me what he should do. I told him to go to the bathroom. Next he wanted to wash his hands. He said 'I can't figure out what to do. It's not set up properly. I don't know what to do.' I had to get out of bed and tell him to turn on the water and wash his hands. Once he started the process he was able to finish it on his own. A few minutes later I was giving him his medications, and he thought he needed to wash his hands again. So we repeated the process so we could move on to taking his meds. Earlier this week he seemed particularly confused one morning. He was unclear about whether the toilet set/lid should be up or down. Then he couldn't figure out where we were going - I continually reminded him that we were going to work. (He thinks Easter Seals is his work. He calls it The Office, or one time called it State Fund, where he used to work.) He's also had trouble eating breakfast this week. He's been staring at it wondering what do. In general, at meals, he gets up a number of times during the meal. He gets a drink, even though he already has one. Or another napkin. Or kleenex. It's usually for something he already has because I've come to anticipate this and try to make sure he has everything he needs before he sits down to eat. When we were decorating our Christmas tree last week he had quite a bit of difficulty putting the ornaments on the tree. One had my name printed on it. He asked who it belonged to. So in general he's definitely getting more confused as the disease progresses. But on a brighter note, sometimes he's more 'on'. The other day a couple of his friends took him to the movies and out for dinner. They said he was 'attentive and involved' so that's a definite highlight. John usually rallies when other people are around and hides some of his confusion. Or maybe he's simply more interested when he with other people so he's more focused on what's going on around him, rather than the cobwebs in his own brain. He's definitely more pleasant when we're with other people. I'm still seeing improvement with his seroquel medication. While he still complains about me killing him when I help him shower in the morning, he's not as aggitated as he was before. He complains, but he's not quite as upset and complies a bit more easily. Despite it all, he remains kind to other people. He often comments on how nice someone is, or how impressed he is with someone who helps us, like at a store, or recently at a financial meeting. Sometimes he's impressed when some fool acts like an idiot, and that always entertains me! I like that he'll still see something good in someone even when that person is frustrating the heck out of me! I know how stupid this sounds, but I remember a movie about a person with dementia. In the movie the husband reads her old diary to her to help her remember their lives together. Occassionally she remembers and they reconnect in a deeper way. I have not seen any sparks of memory like that in John. While I can sometimes explain who someone is and he'll understand his connection to that person, I don't see him gaining his essence back in flashes like that. I don't see significant moments when I can connect with who he was in a meaningful way. So no, the movie isn't real! But somehow it created an idea in my head that sometimes, on occasion, he would be able to find himself for brief time. And while it's true he definitely has periods of more clarity than other times, I can't ever reach - he can't ever reach - the person he used to be. What I wouldn't give for a small piece of connection like that!