This morning, Burt asked me what I was doing yesterday. I said I was in the park with you. “I didn’t see you. Why didn’t you come say hello?” It now occurs to me that Burt is antsy in the park when he doesn’t realize I am with him.
Tag Archives: #challenges
Advocacy
A provider is giving me a hard time over my healthcare proxy. They’ve refused to discuss Burt’s plan of care until they vet my proxy. This morning, while mulling my frustration, I thought oh come on. I have the marriage certificate.* That should be proof enough. [*Side note: a beautiful copy of this docunent arrivedContinue reading “Advocacy”
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”
Going home
It’s a mystery to most of us, but come sundown or thereabouts our pwd will fervently express a desire to “go home.” Oh, honey, good news we’re here. Burt’s response “I’ll take your word for it.” Yes, we don’t have to travel or anything. There are other occasions when he’s eager to go home. AsContinue reading “Going home”
Easy
Burt has a susceptibility to falling in love. I have mentioned it before. This morning, I noticed a new criterion; [the first is that the “girls” treat him well or ‘are nice to me’ as he puts it]. “We met when you brought me breakfast,” he says. Since we had had so many issues withContinue reading “Easy”
Harder=Easier
It’s hard to explain. It makes little sense even to me. But… There is something about the challenging symptoms and behaviors that, as they pile on, invite a more vigorous response. He has wilder delusions, more vivid hallucinations, less coherent responses, and my capacity to deal is supercharged. Yes. I have bags under my eyesContinue reading “Harder=Easier”
My guy
Exasperating though he is…. It’s a long shift when early rising and a later bedtime turn the day into 16 hours. In much of this time, he is totally and naturally confused. His conversation, as I may have mentioned, is a constant deposition of theories and ideas. There is an insight occasionally which jars meContinue reading “My guy”
Funny you should ask
There is nothing funny about having dementia or caring for a loved one with dementia. Yet there is nothing more welcome to patient or carer than a hearty laugh. I devise amusing (to me) ways of looking at our plight. I picture Lewy as a roller-coaster (as it is most regularly described) on and offContinue reading “Funny you should ask”
Sidebar
On aging In my early 70s, not so very long ago, I was going on [pretty] wild Spin Rides at a gym on W49th. It’s an experience I can’t imagine having now, although I can recall it vividly. The Spin room had a screen on which were projected travel destinations. Some were real and hilly.Continue reading “Sidebar”
Psychosis
Cognitive function, executive function, bradyfrenia, autonomic system, bradykinesia. There are so many impairments as Lewy bodies take over, and our loved one declines. Psychoses. There’s a scary word. And those are the hardest aspects of LBD to manage. I watch out for falls. Hold onto him for dear life sometimes to maneuver him onto aContinue reading “Psychosis”
this is our life 