You and your spouse are on this journey together, and apart. You stand by his side, but his path is not the same as yours. Lewy Body Dementia is a disease built for two, as I had often observed over the years. When your spouse is stricken, you and s/he are both in it forContinue reading “The journey”
Category Archives: Lewy Body
Near the end
During what proved to be Burt’s final decline, he welcomed the company of some hallucinatory friends. His first experience with hallucinations had been of little people occupying our studio apartment; that had occurred at the beginning of our run-in with Lewy and those little occupants annoyed him. Now, he was having serious, intense conversations withContinue reading “Near the end”
At the beginning
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”
Sixth stage
When you’re caring for a person with dementia, you get to repeat the five stages of grief over and over. While your spouse is playing out his Groundhog Day, repeatedly wondering what time it is, you’re stuck in denial anger bargaining depression acceptance over and over. It’s not just sorrow (and surprise) as a newContinue reading “Sixth stage”
Alternate world
If you are living with a person with dementia and particularly this dementia, you know that your person spends much of his day in an alternate reality. There are delusions and theories that give credence to and explain them. Hallucinations are common occupants in the world of your loved one’s with LBD. Burt’s hallucinatory companionsContinue reading “Alternate world”
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”
Recognition
When we started our ride with Lewy, I was cheered± by one assurance. Unlike Alzheimer’s the person with this dementia will always know his/her spouse. It’s a tricky point. They didn’t tell me that he would tell me that his wife was dead; or that he hates her. They didn’t say that there would beContinue reading “Recognition”
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”
In the public eye
This occurred to me today: It is not fair that I have violated Burt’s privacy in describing our journey. I have shared his delusions with you; I have lamented his decline; I have exposed his hallucinations; I have described his terrors and his joys. It should be enough that his Lewy Body Dementia diminishes him.Continue reading “In the public eye”
Awareness
In trying to keep a positive attitude over our situation, I also try to find humor when I can. This doesn’t mean that dementia is not a dreadful disease. As it is Lewy Body Awareness Month, we need to stay aware of just how devastating LBD is. All dementias occur as some necessary protein inContinue reading “Awareness”
this is our life 