Among those caring for the Lewy- afflicted, LBD is referred to as a roller-coaster. I hated those before embarking on our Lewy journey. As you can guess, I am not a fan of the wild ride now. Lewy Body Dementia is unpredictable. Lows can be followed by some highs. Or at least some regained ground.Continue reading “Down up up? Down? Up”
Category Archives: Each day, a new day
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”
Emotions
I have talked about how emotional Burt has been. Lewy Body Dementia is often described as a roller coaster (hate ’em) because of fluctuating symptoms and variable every thing. It’s also a roller coaster of moods that can shift in a minute or a heartbeat or an hour. For him, I would think those changesContinue reading “Emotions”
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”
Good news
For some good news
I have mentioned Burt’s enjoying people as a highlight of his disease. He has grown more outgoing over most of the course of his dementia. During the first phase of his recent dip, he stopped engaging as he had. Part of this is because he doesn’t recognize the neighbors as he used. Lately, he’s backContinue reading “For some good news”
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”
Bluey
I started watching cartoons with Burt because they were colorful with plots that were easy to follow. The default mode for him is to misinterpret much of the action anyway. His “favorites” like Law and Order were too complex. And for my two-cents too violent. I worry about how he’s processing events on Columbo. WeContinue reading “Bluey”
Growth
What experiences in life helped you grow the most? Let’s look at the question in the all- consuming context of caregiving. Other experiences have contributed to my professional growth. They found a place on my resume. Falling in love helped me grow in my heart and soul. Then along came my love’s dementia and IContinue reading “Growth”
this is our life 