Witnessing a loved one suffer any long, drawn-out illness is painful. Of course, it is. When my mother was diagnosed with pancreatic cancer and given six months to live, it felt like we were embarking on this together. I wasn’t the one who would die, I know, but we faced her last days in solidarity.Continue reading “Caring”
Category Archives: Symptoms & signs
Dx
What’s the most profound piece of advice you’ve been given? Did you take it? When Burt was first diagnosed, I was sure that his symptoms were acts of willfulness. It should not have taken a social worker to tell me that he wasn’t being difficult. Dementia isn’t performative. It’s profoundly distressing, and not just forContinue reading “Dx”
It will be different
Everyone’s journey is their own Your experience with your pwd will likely differ from mine. It’s never the same, yet there are the broad strokes. Different and the same, there are symptoms that may be familiar or that you and your loved one may never encounter. The saying among LBD carers is “if you’ve metContinue reading “It will be different”
The walk-in shower
A visit to a friend whose walk-in shower was enviably better appointed than the one I had had installed was a reminder of why I ordered mine. I had hopes that it would make life easier for Burt after his stay in rehab. Bathfitters made quick work of replacing the tub with the easy accessContinue reading “The walk-in shower”
Finding out
It had not occurred to me that anyone faced with caregiving alongside a person diagnosed with dementia would not seek… help, to learn all possible. I know you would not be following along here if you were that incurious. To my utter surprise, I met a disinterested spouse recently. I gather she had gone toContinue reading “Finding out”
I have some theories
Burt had panic attacks all of his life. By the time we got together the anxiety was mostly and as time went on increasingly under control. Anxiety is one of the symptoms that plague those with Lewy Body Dementia. Burt’s anxiety during his years with this illness was mild although we had some concerns aboutContinue reading “I have some theories”
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”
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”
Grateful
It’s easy to find little annoyances that “ruin” our day but honestly it’s just as easy to find gratitude. I am heading to meet some fellow caregivers at a party. Alzheimer’s Association 6th Annual Caregiver Appreciation Event will be our first in person meet-up. Those of us who’ve been answering writer prompts will also shareContinue reading “Grateful”
Fears
Paranoia is a frequent visitor as we age. I think it’s because the old know they [ok we] are vulnerable. For those with dementia there’s a greater feeling of susceptibility. Your p.w.d. may seem unaware of having a malady, but s/he senses that there is something off. Paranoia seems like a way to protect ourselvesContinue reading “Fears”
this is our life 