Happy Alzheimer’s Day! I found a new book!
Today, September 21, 2023 is “World Alzheimer's Day… a global effort to raise awareness and challenge the stigma around Alzheimer's disease and other dementia.” https://www.alz.org/about/awareness-initiatives/world-alzheimers-day
To celebrate, I want to share a new book I’m a few chapters into: Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain, by Dasha Kiper (Penguin 2023).
For me, it’s already on my “you MUST read this if you’re a dementia caregiver” list, next to The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias, by Nancy L. Mace and Peter V. Rabins (7th ed., Johns Hopkins U, 2021).
I do a lot of reading to understand my partner’s Alzheimer’s. I’m far from expert, but I can talk about beta-amyloid, tau tangles and acetylcholinesterase inhibitors; what sundowning is, why benzodiazepines might not be a good idea, and what to do if a person with dementia gets argumentative. But here’s a book about me, and why my brain as a caregiver for someone with dementia sometimes feels like that fried-egg “just say no to drugs” commercial (for those who want a nostalgia kick: https://www.youtube.com/watch?v=8gaxWcHkbpI).
Travelers uses a nuanced understanding of how memory is stored and retrieved, along with snippets from literature (Borges, Kafka) and case studies, to answer the question “If I’m not the one with dementia, why am I feeling like I’m crazy?”
Okay, I’m going out on a limb here, hoping to challenge gently some assumptions about romantic love. I’m a 68 year old lesbian, on my good days a “5” (out of 10) in terms of attractiveness, and have been in a committed relationship for 26 years. Romantic love may start with hearts, flowers, percolating hormones, and all the trimmings. It’s important to keep the flame alive with tokens. But mostly, it’s a Disney illusion.
But my image of true love is a photo I took of my parents before they died, around the 68-year mark of their marriage. He’s pushing a rollator down the hall of their independent living center, probably muttering about hip pain. She’s clinging to the rollator, too proud to admit she could stand to use one too. They’re both hunched over, hobbling. Mom almost didn’t go on a second date with dad, because when they rode home together from their first date on the NYC subway, they got to her stop and he said “so long, it’s been real, see ya!” No goodnight kiss, no handshake, didn’t even get off the blippin’ train to make sure she got to her apartment safely. (I always suspected the man was autism spectrum.)
They made it as a couple because they gave each other a chance. I made it because despite my partner’s mental health melt-downs, I had promised to see the good in her. Not the pretty. Turns out it wasn’t mental health—it was the beginning symptoms of early onset Alzheimer’s. She’s now in what I call the Roach Motel nursing home, where I hate going because of the institutional indifference. But I keep going. Because I love her.
If you sleep 24/7, and don’t go out into the world, you won’t have the opportunity to meet anyone, find friends, see if there are any sparks that lead to more. Give serendipity a chance—my partner and I met at a local food coop, when the cook in the little restaurant there said to each of us “have I got a girl for you!” Each of us was volunteering (back in the day when coops had volunteers) in the kitchen, because we were two of the few people whom the head cook could tolerate.
Big hugs from another virtual stranger!