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.