What was true a week or maybe two ago has changed now. It will always change. I can not cease worrying because there may honestly be something worse or just different about to happen. Things are harder with Burt in bed all the time. Have I mentioned that? I know I have spoken of noContinue reading “Letting go”
Tag Archives: #abilities
He doesn’t call
Burt always called me during my respite hours. At one time, while he still could, he’d place the calls himself, relying on the numbers from the phone book I had made him. Then he started getting his aide to place the call or to text me to call him. It was intrusive. I picked upContinue reading “He doesn’t call”
Amazing
In Down down up, I made the case that there was no denying Burt’s impairments. He’s no longer tethered to his Wall Street past, except for his frequent talk of money and time. He doesn’t see the companion of his journey by his side but lives with lots of imagined company. (Let me clarify, althoughContinue reading “Amazing”
Down down up
When I speak of Burt’s return or of an upswing, I am grading on a curve. After his recent declines, he has not achieved clarity, coherence, or cognitive functioning. He tells me of imagined trips where he met people with wonderfully unlikely names. He insists I bring Tamara to him when I say, “I’m yourContinue reading “Down down up”
A weekend routine
We were going out on Saturdays and Sundays. We went to Karl Schurz Park or to watch the waters along the East River Esplanade. We stopped at an ice cream parlor on our route to or from. When the park outings proved too much, we still went out for an ice cream. We went out.Continue reading “A weekend routine”
Speaking of work
Burt was looking for a job. I know I mentioned that a few times. It’s hard to dissuade him, and this delusion that he needs to work is persistent. The other night, he was intent and preoccupied with some sort of project. He’s always managing and directing others at his job. Work kept him upContinue reading “Speaking of work”
A question of time
Recently, a kindred caregiving spouse wondered how many hours of care she should consider for her husband. She had been going it alone, and with all her heart and love. Anyone who’s been there knows how intensely draining and lonely this can be. There comes a time on this journey when caregivers need relief. ForContinue reading “A question of time”
Relieved?
It was a relief of sorts to realize that Burt’s decline of yesterday was due to a raging fever. The fever, after a night with Tylenol, is in a more manageable range. I am ashamed of myself for being so angry and impatient over Burt’s inability to get out of bed. How unkind of meContinue reading “Relieved?”
Heartbreak
Lewy Body Dementia offers just reams of tales of heartbreak. They appear as unexpectedly as if we all didn’t know where our story was heading. Every decline has been a surprise to me as if there was a plot twist I hadn’t seen coming. I can’t justify this reaction. I know what this journey ofContinue reading “Heartbreak”
In the public eye
This occurred to me today: It is not fair that I have violated Burt’s privacy in describing our journey. I have shared his delusions with you; I have lamented his decline; I have exposed his hallucinations; I have described his terrors and his joys. It should be enough that his Lewy Body Dementia diminishes him.Continue reading “In the public eye”
this is our life 