A year ago, I commemorated Oct, Lewy Body Awareness Month, by beginning this chronicle of our journey. October marks 4 years since Burt was diagnosed. It is not a happy anniversary. Nonetheless, I remain grateful that I can still enjoy him. We are having some rough times, but he is still my delight. I amContinue reading “LBD Awareness”
Category Archives: Lewy Body
Help is on the way
As a caregiver, it’s easy (and way too common) to feel alone on the journey. In many ways, we are. The idea that no one is coming to our rescue when we are in the throes of a Lewy episode; the feeling that the worst moments are the ones only we can handle is provocative.Continue reading “Help is on the way”
Stay calm
My role as a caregiver to a person with [Lewy Body] dementia demands I get acquainted with psychosis. A calm and contained demeanor is preferred to one in which I freak out. In a tour of an exhibit in which art and psychiatry crossed paths, it became clear to me that the psychotic makes meContinue reading “Stay calm”
On Repeat
This is our life is getting to be a bit repetitious. We manufacture our own excitement when dealing with Lewy but there’s all that shucking and diving, ducking and jiving. And lots of calls to say again. On Saturday I ignored Burt who did not settle down again last night and listened to 2 ConanContinue reading “On Repeat”
Lewy lou-ie
I can do nothing to make Burt know who I am. I feel like I should be able to force the issue somehow. It is heedless and needless to allow his who-are-you’s to distress me. It’s the disease. Our weekly outings are very exhausting. In the evening, when we get home, he has to askContinue reading “Lewy lou-ie”
What’s changed
Our lives have been turned topsy turvy by Burt’s dementia. Lewy Body has no timeline, but it does twist time. Obviously, Burt has been changed by his illness. Not so obviously, so have I The question: How has my pwd’s dementia changed me? has a long answer. I so want to say I am aContinue reading “What’s changed”
Mid night thoughts May 7th
It’s a pernicious disease that has outsmarted us both, and Burt and I are pretty smart. Lewy Body Dementia has made its wily way into our lives. I have been split into fragmented personalities some of them adored some abhorred others tolerated. Burt is never fully alone except when he dreams I have abandoned him.Continue reading “Mid night thoughts May 7th”
Bitter Sweet
This is what I shared with a group of my fellow LBD spouses about our 32nd anniversary: It’s the anniversary we’re not celebrating this Friday. I am so glad we did have his 84th surprise party and my birthday with friends when he was able to engage and enjoy. Burt’s current downturn makes those recent celebrationsContinue reading “Bitter Sweet”
That touch of spring
Last night Burt, thinking I was his (need I say deceased) mother said he was getting married to a girl from Carolina. He said his wife didn’t love him; she used to but it’s died out.Well, that did it! After a while, I fessed up to being his wife and said I was hurt. HeContinue reading “That touch of spring”
My gratitude journey
A few short months have passed since I thrilled at how well Burt was doing. He truly enjoyed his surprise birthday. That was in November when a group gathering to celebrate him was a very welcome experience. He made it through my birthday party in early February. It made his decline by the middle ofContinue reading “My gratitude journey”
this is our life 