October 4, 2023

I woke up a while ago to find John standing next to my side of the bed. I'd fallen asleep with my hand on him so I'd know when he woke up and got out of bed. Well that didn't work. He got up without waking me, wandered over to my side of the bed, and peed on the bed. Peed on me! So I'm washing a ton of bedding in the middle of the night. I guess it's good news that the duvet and I soaked up the urine because the mattress is dry. The carpet is a little wet but not too much. But I was wet, the sheets were wet, and the duvet was wet. And John continues to pace around the room now. I've forced him back into bed but he kept trying to get out of bed. Finally I got up to throw a load into the dryer and he immediately got out of bed and started pacing. Another event last night - after work we stopped at target to pick up a few things. I decided to try something on and brought John into the dressing room with me. Of course single people were using the 2 family dressing rooms so I brought John into a smaller dressing room. He seemed agitated and started to undo his belt - I think he thought we were in a bathroom and he was going to pee in there. So we hustled out of the store as quickly as possible. Oh one other thing - he started talking to one of the mannequins in the store. Good lord we're a sight! Back to the pacing - Edna said he's been pacing a lot more at EasterSeals and suggested I resume the daytime dose of seroquel. The increase of the pacing has caught the eye of the director and she asked Edna about John's behavior. Recently I've been giving seroquel to him at night only because it helps make him drowsy. So I'll resume the daytime dose to see if that helps. Maybe getting him back to his full dose will help. It's hard to know if behaviors are related to medication or if they're just part of the disease progression. John was often pacing before I reduce the medication, but it's definitely worse now. In other news, I canceled John's phone line and gym membership this week. He lost his phone a couple months ago and it hasn't magically shown up, so there's no need to pay for the phone line. He doesn't know how to use a phone anymore, but I've used it to track him. But apart from EasterSeals he's rarely separated from me so the tracking isn't much use anymore. As for the gym membership, it's been a really long time since he's used that. I'd basically forgotten about it. His membership fee was crazy low because the membership rate goes back to the 1980s I think. Still, those things, the phone line and the gym membership, they're part of the many deaths involved in this disease. They're the little things that make up the incremental deaths of Alzheimer's Disease. In my dementia support groups (I'm in 2) we talk a lot about the toll the disease takes on the caregiver. It's not just the person with the disease who suffers, it's the whole family. As the disease progresses, the caregiver's world gets smaller. That's definitely true for me. I'm very limited in the things I can do, and I don't get out much anymore, or do the things I like to do. In the support groups we talk about how, as time drags on, the years of trauma changes our biochemistry. We have to actively prevent ourselves from declining with our loved ones. But that's far easier to say than it is to do. The bottom line is that the caregiver's well-being is just as important as their loved one's well-being.