It is more than mildly distressing to me to throw the p.w.d. label on djt. It also gives me pause when I hear my news sources or Rep. Madeleine Dean, say that trump is “losing it.” I feel it dishonors Burt. I also acknowledge that my stance on this is weird.
Category Archives: #dementia
Costs of care
The cost of taking care of a loved one with dementia is high. The American healthcare system is unlikely to be much help. Long term care insurance might provide the bandaid to expenses. I don’t know the cost to benefits analysis of buying this insurance; I didn’t have it. When your person gets ill, youContinue reading “Costs of care”
An essay for carers
Why I will always treasure the healthcare pros who came into our lives when Burt got ill. There is a diminishment that comes with dementia. The dementia sufferer and the family who loves him see their quality of life plummet. It happens over time, but it also is evident early on, sometimes on day one.Continue reading “An essay for carers”
What prepared me for my role as caregiver
This writing prompt prompted me to consider what life was like during my journey with Burt and where it is now… Life after your spouse dies has a new landscape. When added into that structural change is the fact that you spent many years as a caregiver, well, that’s a now what moment. At leastContinue reading “What prepared me for my role as caregiver”
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”
It’s an aggressive disease
Long ago, that’s what 4 years feels like, Burt needed only companion care. Or, I needed it for him so I could feel he was safe and not alone while I took time for myself. I always knew the time for myself was a necessity if I would make it through the slog. Along theContinue reading “It’s an aggressive disease”
Call and response
Burt has taken to pontificating all night long. Or, almost all night. Twice when I said «it’s 4 in the morning now, you can try to sleep,« he’s agreeably responded “that’s all right with me.” I always refer to him as “honey” at 4a.m. He sleeps deep into the morning after that. Unlike some ofContinue reading “Call and response”
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”
Xtra xtra read all about it
Today, after resisting when our weekend guy put him in a sitting position, Burt settled into it. He relaxed and held himself up. This was unusual for him as he generally sinks back. Not unexpectedly, he started talking. His narrative ran into unfamiliar territory as he started discussing getting up. We perked up. His aideContinue reading “Xtra xtra read all about it”
Confusio n
Let’s look at what being confused is really like. I think we often feel that it’s a pleasant state or, if not quite pleasant, a not-unpleasant one. You look around, and things don’t make sense, but you know, who cares: It’s all good. In this assessment, confusion is confused with the “no worties” state ofContinue reading “Confusio n”
this is our life 