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”
Tag Archives: #LewyBodyAwareness
The good and the…
When I blog about Burt’s Lewy, I am not sure that I am being respectful of his dignity. I don’t know how he would respond if he knew I was sharing his worst moments as well as his best. I share much of our life experiences in the spirit of caring and love with whichContinue reading “The good and the…”
Sharing
Burt just asked one of our neighbors if he knew about his dementia. Of course he did. Burt said, “It’s the worst.” Our kind neighbor said,”Yes.” Recently, I wondered what Burt’s understanding of his disease actually means. I guess I am trying to fathom how deeply he comprehends that he has a brain disease. HisContinue reading “Sharing”
Mellower
Me. Not he. I have become a less bristly me since Burt was diagnosed. Oh, yes, I panicked at first. He was so listless. Now his moods (for examples etc. see I’m so emotional…) give him plenty of volatility to play with. There are lulls, and he can be calm and kind. I was alwaysContinue reading “Mellower”
It’s sad but clear
We are preparing to let our loved ones go. It’s impossible to predict if we are headed to a long-term care facility. It’s hard to tell how long we’ll have with them once the disease starts. It’s even hard to guess where and when the next phase will take us. As I started my journeyContinue reading “It’s sad but clear”
Respite
It’s frequently a piece of advice which some caregivers have come to resent. It is given in a spirit of concern, but some of us feel it is de trop. “I know I have to take care of myself,” one of my confederates said. “I don’t need to be reminded.” Take care of yourself. IfContinue reading “Respite”
From the other’s perspective
It’s easier to speak of the “job” we do as caregivers and how hard things are for us. It’s more of a heartbreak seeing things from the point of view of our beloved. Dementia is very hard on them. My husband explains that he has a brain disease to people he knows. Sometimes, he isContinue reading “From the other’s perspective”
All in a day’s work
Reluctantly, I am documenting a part of our life I never anticipated. It’s an easy bet that anyone thrown into a caregiving role didn’t expect life to turn out as it has. It’s also true that for many of us, the caregiving has brought us strength we never expected.
Where we are
Everyone seems to have settled on calling this a journey. I get it. Life is a trip we take. It’s a journey we have undertaken and a course that we are set upon to follow. Whither it takes us, we go. Like many others amongst us, our journey took us to unexpected places. Several yearsContinue reading “Where we are”
Hesitant
There are many excuses for my reluctance to post about such a personal matter. It’s Lewy Body Dementia Awareness Month, and that has jogged me towards sharing our experiences. My husband was terribly confused at first. Those were his symptoms. He didn’t know who I was and would often also try to find me. HeContinue reading “Hesitant”
this is our life 