By the time I started relating our journey through the pages of this blog, Burt and I had been at it for over three years. I described what transpired in the early days but I know it was from the perspective of distance. I feel like the beginning is the subtlest but least documented aspect ofContinue reading “At the beginning”
Tag Archives: #LBD
January 28th: it’s not Alzheimer’s
Lewy Body Dementia Day Lewy Body International, founded in 2022, is comprised of organizations from 11 countries. January 28th is designated as Lewy Body Dementia Day by this group of organizations dedicated to working with people affected by this disease. They form a cooperative alliance to share knowledge to build awareness, to offer resources, andContinue reading “January 28th: it’s not Alzheimer’s”
He knows me, he knows me not
«That’s not a very LBD thing,« my support group leader mentions. It’s not, and I resent that. There had been «a promise« that I would not be forgotten. The word was people with Lewy Body Dementia tend to always remember their loved ones. It’s not like Alzheimer’s. Well, Burt knows I am important in hisContinue reading “He knows me, he knows me not”
A timeline
Burt had a sudden downturn starting in October. Although I have documented Burt’s decline, I am still unsure of the actual events. His decline has been incremental and gradual. It has also come on suddenly, precipitously and unexpectedly. In October, things like confusion and hallucinations seemed more noticeable. Soon thereafter, one of his aides andContinue reading “A timeline”
Speaking of work
Burt was looking for a job. I know I mentioned that a few times. It’s hard to dissuade him, and this delusion that he needs to work is persistent. The other night, he was intent and preoccupied with some sort of project. He’s always managing and directing others at his job. Work kept him upContinue reading “Speaking of work”
A deep dive
In the abstract, I am fascinated by the mechanisms of Burt’s disease. In reality, the manifestations of Lewy Body are overwhelmingly sad. Trying to deduce patterns is part of my close study into all things Burt. I want to see what prompts his irrational conclusions and how his fantasies develop. There probably is no pattern,Continue reading “A deep dive”
The battle continues
Here are some of the things Burt’s lost along the road our journey has taken: The construct of time. It is a made-up thing. He was right about that early on. He would say, “Why is it day or night?” Well, not so much right on that point. Time is a man-imposed measure, but natureContinue reading “The battle continues”
Support
There is a unique and uniquely helpful support group offered by New York alz.org. I have been participating in this wonderful writers group this past couple of months. Each session, we are guided by helpful prompts to explore our experiences in the caregiving journey. We then take some 15 to 20 minutes to write itContinue reading “Support”
Literary illusions/alusions
In the beginning, just before we got his diagnosis, I would describe our life in view of literature. The comparison to Ionesco fed my worldly aspirations. Rhinoceros also kind of described where Capgras was leading us. Of course, Groundhog Day also fit the bill when repetition was a regimen. An attempt at absurdist wit wasContinue reading “Literary illusions/alusions”
I’m a person too
In the midst of all the losses- Burt is distressed that he has no job, I took his money, everyone in his life feels they can boss him – he will say, “I’m a person too.” This plea for respect and dignity is in part complaint and in part a request. It never references hisContinue reading “I’m a person too”
this is our life 