September 28, 2023

The good news is that the TV still works. The bad news is that John peed on it. A few nights ago I woke to the sound of him peeing and bolted out of bed hollering at him. The TV in our bedroom sits on a cedar chest so it's a bit low to the floor. And sure enough, John was standing in front of it peeing. So maybe the TV was more in the splash zone than a direct target! I cleaned up the mess in the middle of the night and went back to bed thinking that it was taken care of. Then in the morning I realized that although my sleepy head thought I'd done an adequate cleanup job, that was certainly not the case! All I'd done was sop it up. So I cleaned it properly in the morning. Ugh. John continues to wake up often in the night and tries to get out of bed each time. Lately I've been sleeping with my hand on his shoulder or my arm on his, so I can pull him back into bed when he starts to get up. So neither of us is getting a lot of sleep these days.

September 23, 2023

I mentioned on a previous post that I was planning to reduce the dose of Seroquel I've been giving him. The Neurologist thought that might reduce some of his zombie like behavior. He's not as aggressive as he used to be so maybe he doesn't need as much of the medication. We decided to reduce the Seroquel first, then once that's leveled out, discontinue the Namenda. The Namenda is an Alzheimer's medication that can help with behaviors. Well, since Seroquel makes him drowsy, and John isn't sleeping as well these days, I decided I didn't want to mess with that dose. So I've dropped the Namenda (which apparently doesn't seem to work for most patients after they've been taking it a while) and I haven't noticed any change in him. So at this point John is only taking Seroquel each night. After a few weeks I'll try reducing that dose a little as well and see how it goes. In general, John isn't aggressive but he is confused and doesn't know what's going on pretty much all the time. Because he doesn't know what we're doing, he doesn't respond well. When I brush his teeth, his perspective seems to be that out of the blue I'm shoving something in his mouth and pushing it around his teeth. Nobody would respond well to that. Twice this week when we were leaving for work in the morning, he won't get in the car. He can't figure out what I'm asking him to do or why I would do that. So I ended up forcibly pushing him in the car, shoving his head inside, then grabbing his legs one at a time and hauling them into the car. It's not pretty and no wonder he doesn't like it. I don't like it either and feels abusive. But I don't know what else to do - I need to get to work on time. One of John's sisters who watched him last weekend said that she realized he doesn't know how to go to bed. He was clearly tired, and she had to kind of force him into bed. Once there he fell asleep almost immediately and lucky for them he slept all night. Sometimes he'll sit on the side of the bed but then doesn't know what to do after that. He ends up standing up and pacing around the room. He does a lot of pacing these days. He's pacing right now. I read recently that when you want a person with dementia to do an activity, they act uninterested. As caregivers we have to compensate for 3 different areas: 1. Initiation - They don't know how to start. 2. Sequencing - They don't know how to take the next step, or to transition. 3. Apathy - Motivation is a front brain issue. Neurologically they don't care and can't help it. I heard a podcast recently that was specifically about dementia caregiving in the black community, but it applies to all of us I think. That said, dementia occurs in higher numbers in the black and latino communities. Most of the research studies are conducted with white males. Women, and especially people of color, are less willing to partipate in research studies so there's not much science to determine how race or even class impact dementia. Back to the podcast, the women talked about what they called the sickness of secret keeping. The stigma of dementia remains tainted by people's unwillingness to share their journey. Often times the people with dementia as well as their caregivers hide the disease, or hide the daily experiences out of fear of judgement. They pointed out that finding a community sets us free. We all need a community where we feel safe and don't feel judged. Few people understand the reality of what it takes to navigate caregiving. Sharing the journey makes it a little bit lighter. Another dementia influencer said that when approaching caregivers to remember that they are navigating something big. Bring calm and light, and don't place the burden on them to express what they need. Put yourself in their shoes and adjust your approach when possible. I think that applies to everyone who is in the middle of a struggle. That's most of us a lot of the time. Life is hard - we all need to be kinder to each other.

September 21, 2023

It's the wee hours of the morning but I'm awake so I thought I'd write about some things while they're occupying my mind when I ought to be sleeping. John hasn't been sleeping well recently, so I haven't been either. He has been a great sleeper until now, so I've been blessed. But it's getting ugly. It's been pretty bad this week, but he has a cold so maybe that's made it worse. I woke up an hour or so ago because I heard him moving around the bedroom. I thought I'd better take him to the bathroom but when I reached out to lift the toilet seat I discovered it was wet. He had already tried to pee in the toilet, but since the lid was closed he just peed on top of it. So I ended up cleaning the toilet and mopping the floor. Great fun in the middle of the night. Last night was trouble too. He peed in the sink instead of the toilet. He peed in MY sink! Not his sink. So last night I cleaned the sink in the middle of the night. He - we - were up 4 times last night but at least I fell back to sleep fairly easily each time. That isn't happening tonight. And that didn't happen 2 nights ago. Instead I lie awake with my mind in high gear. Before this week I've been waking up with him when he gets up. I've been pretty successful at getting him to the toilet before it's too late. Maybe I'm too tired this week to wake up right away, so I'm ending up with more messes to clean up. The lack of sleep is taking a toll.

September 11, 2023

Well tonight I heard a noise and jumped up and ran to the bathroom - where John was peeing in the bathtub. I heard a similar noise this morning and that was John peeing as well. He was peeing in - and around - the toilet. So that's been fun. Then last week I was taking a bag of plastic bottles and cans to work (we recycle them and that provides a little money for our petty cash fund to buy things for the school). It smelled weird, and looked like there was tea in the bag. Turned out it was not-too-fresh pee. I keep the bag of cans and bottles in a trash can in the laundry room. Apparently he peed in that trash can recently... A couple weeks ago John fell in the bathroom. I saw it but couldn't tell what made him fall. I wonder if that might start happening a little more frequently. Typically he walks slowly and carefully. John didn't get up right away after the fall; it seemed like he was a bit horrified - not embarassed, but he seemed to be evaluating the extent of his injuries (there were none.) Then I brought a bench over to him and he used that to get up. I've been finding pills in the sink recently, so he sometimes spits them out after I give them to him. The strangest thing though is that he's often not swallowing his antidepressent. He'll swallow other pills, but not that one. I noticed he wasn't eating his breakfast a few times. Then I'd take him upstairs to brush his teeth and find that antidepressent still in his mouth. A solid hour after I gave it to him! So I'd brush his teeth, avoiding the pill, and then drop him off at EasterSeals with the pill still inside his mouth! So after that situation repeating itself, I decided to drop the antipressant and see how he did. Well I've noticed no impact at all, so we're done with that medication. I'm going to try reduce his seroquel soon too, to half his current dose. The Neurologist suggested that to see if it reduces his zombie-like behavior. So we'll try that next. She also suggested that we try eliminate an Alzheimer medication that typically doesn't work well after a year or so. I'll try that after the seroquel experiment is done. I try to not mess with more than 1 medication at a time. But getting him to swallow pills is difficult so if we can cut back on the pills without impacting his well being, then that's a win. It's become increasingly difficult to take John out in public. I've applied for a disabled persons placard to eliminate trouble in parking lots. The Neurologist said it was time and completed the forms. In general I don't think he needs it, but sometimes he'll refuse to get in the car and block the person next to us who is waiting to get out of their car. Or he refuses to move out of the driving area in the parking lot. So I guess it's a matter of better safe than sorry. On Friday night we stopped at Best Buy to replace a built in microwave that died too soon. For some reason it takes ages for their staff to input the order as well as the installation information. The woman helping us was very nice and I soon explained that John had Alzheimers because he kept walking off and I'd hustle over to bring him back to the counter where our order was being processed. She was facing the main part of the store, and my back was to it. At one point she said "He's getting a little far away" and I jumped up and ran after him. The whole process took about 45 minutes but I aged about a year! The woman was very kind though and as we left she made a point to wish me well and reminded me to take care of myself. In general I'm avoiding taking him out in public much of the time. Ben will watch him on weekends so I can run an errand. That helps a lot. And I can move a lot faster. This weekend my niece is getting married. They're are 2 days of events so I'll spend the night near the wedding location. 2 of John's sisters and a brother in law will stay with John while I'm gone. I'm really looking forward to the wedding as well as the opportunity to get away for a bit. I'll be fretting about John, but I'll also enjoy the break. On another note, the other morning I was making John some toast. He was watching me and all the sudden said "What the hell is that?" with a bit of a lilt in his voice. He said it like he might have in the old days, with kind of a funny tone and an emphasis on the word "hell". It made me smile.