Burt’s choice to stay in his bed wasn’t really a choice. I had noticed a decline in the two months leading up to those last two months. Friends who came to celebrate his 85th birthday said he seemed less engaged. After that birthday party, he went out for ice cream in his wheelchair for theContinue reading “Bedbound”
Category Archives: Decline
Careful what you…
When Burt was newly diagnosed, he was feisty. He was difficult. He was contrary. His willfulness made it hard to divert and redirect him. He would argue, fight, and dispute my plans for his care. I would say (or think about) all those stories I had heard of dementia patients who were sweet and docile.Continue reading “Careful what you…”
The balance sheet
What’s become easier in Burt’s last decline? What’s harder?
Am I repeating myself
When our podiatrist visited, her shock over the change in Burt over two months became my shock. There is no escaping the fact that a progressive neurodegenerative disease degenerates. It’s the only progress it knows. Those of us who are living with it are serially surprised. It often or sometimes takes other’s eyes to showContinue reading “Am I repeating myself”
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 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”
It’s a chore. It’s a delight.
The sound of the glug glug as the bottle empties makes me smile. Feeding Burt is a task. My wait time patience between spoonfuls is limited. I have to resort to a slow, silent count and to posture breaks. Feeding Burt is also the one remaining intimacy we share. That and giving him to drinkContinue reading “It’s a chore. It’s a delight.”
He’s back
Burt’s decline has been very distressing. Yesterday, he slept all day. He didn’t respond to his aide and this scared her. Today, he’s back and chatting. Giving advice, happy. Ah, Lewy. He’s staying in bed but eating well and talking a lot.
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”
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”
this is our life 