Everything nearby can be a trigger for memories and the sadness they evoke. When I passed the cafe at Sotheby’s today, I was mildly cheered that it no longer occupied the top floor. Burt and I had eaten on the rooftop terrace for years. I miss being able to do that with him. Of course,Continue reading “Old Haunts”
Tag Archives: #challenges
Know what?
Bette Midler as my jam today was in contradiction to the pity party I was engaging in. Burt tends to make less sense than ever of late. He still expects me to fill in all the blanks. He’ll cite a destination for an activity of an unspecified type. I am charged with knowing both whereContinue reading “Know what?”
Musings
Did this hardship come along To crush my spirit? To enrich my skills as a poet of feelings? To test and strengthen my heart? The “why me” and the “why us” are a miserable way to greet adversity. Miserable. And often hard to avoid or circumvent. “Hard” means more difficult, not impossible. Or impassable. CourageContinue reading “Musings”
My journey alongside Burt
Thank you for those of you sincerely concerned about me as I struggle. I am processing all that this journey entails. The sadness. The anger. The worry. The disappointments. The tedium and the unpredictability. The sheer physicality of the challenges of care tell me I have to train harder to meet this particular Everest. IContinue reading “My journey alongside Burt”
When in doubt or crisis
throw some love at it Seriously, and any dementia is a serious illness, there are positives to caregiving. [See also here] In the midst of declines and the unpredictability of what I am experiencing, staying clear of depression is a necessity. Holding onto the one reason I am here is too. So reassuring him andContinue reading “When in doubt or crisis”
There’s a lot to be said
From pretty much day one of Burt’s symptoms, I looked to getting help. Initially, it was because I needed my time. I wanted to get 3 or 4 hours several times a week to get out. It seemed an existential need for me. In the parlance of our dementia communities, it’s deemed “self-care.” Some ofContinue reading “There’s a lot to be said”
At the start
When Burt first presented with his array of bizarre and unexpected symptoms, I simultaneously felt [that] “I couldn’t” and “I got this.” My current state of mind is very similarly disposed to having it both ways. Often, it looks like he’s also on the same page. “Got it” and “I just can’t.” After a recentContinue reading “At the start”
What’s changed
Our lives have been turned topsy turvy by Burt’s dementia. Lewy Body has no timeline, but it does twist time. Obviously, Burt has been changed by his illness. Not so obviously, so have I The question: How has my pwd’s dementia changed me? has a long answer. I so want to say I am aContinue reading “What’s changed”
Spinning yarns
It’s far more relaxing to spin plans with Burt rather than struggle. Is it an effort? Creating some very peculiar scenarios can tax my imagination. It doesn’t try my patience as much as resisting his. Today, he’s both insistent that we take a train somewhere to get home and that I left him alone forContinue reading “Spinning yarns”
Throwbacks
This many years in, I have assured lots of precautions will keep us financially safe. And me in control. We have the requisite legal papers in place as well. Despite that, when Burt, in a flashback to earlier capabilities, said, “I’ve never lost money,” there was a little shiver of fear. He was urging investments,Continue reading “Throwbacks”
this is our life 