If this column touched you, three excellent recent books on #dementia and #caregiving informed my perspective: "My Father's Brain" by Sandeep Jauhar, "Finding the Right Words" by Cindy Weinstein and Bruce Miller, and "Travelers to Unimaginable Lands" by Dasha Kiper. All worth reading.
@stevesilberman your column was deeply moving to me as an older AuDD - your mother is fortunate that you were able to hear her and move her to a more supportive home.
@stevesilberman I just saw this and I appreciated it as a psychologist, neurodiversity advocate, and daughter of a mom with dementia. Similarly, our mom was telling us that things were wrong in her memory care, but you had to listen between the words to get the picture. We reported the facility and things suddenly improved. I rely on your voice of sanity and appreciate knowing your journey. Thanks for writing this.
@stevesilberman we have a kid who is profoundly autistic. The elder care capitalists lurking around adults with special needs has me launching our own plans for his adulthood.
@stevesilberman Thanks, Steve. My dad died just a few weeks ago from "Failure to thrive resulting from Alzheimer's." It was a nightmare, exasperated by our broken US Medical system.
@stevesilberman An excellent article, and I'm glad you found a place for your mother. Tragically there aren't enough of them and they're extremely expensive. That's why so many people dread growing old. Being put in a warehouse with "Boss Lady" and the like. Very common, sadly.
@stevesilberman This is just a sinister sign telling me to pull my finger out and finally subscribe (again) to Scientific American, a great publication whose subscription I cancelled decades ago when a family meant I no longer had time to do it justice each month. Clear expository writing and brilliant graphics.
@stevesilberman Wonderful article about a tough subject that many of us will face with our parents, elders or ourselves. When your loved ones get to place that you can’t care for them yourself, there is generally only a list of facilities that are better then the worst. Paying attention to the clues you pick up from staff can be very valuable. My mother in law cycled thru a number of facilities over an 8 month period for various reason.
@stevesilberman
Wonderful article Steve, Having been there twice ourselves we have an appreciation for your story. What a gift your Mother gave you when she expressed her gratitude. I’m sure you will cherish it. She is a fortunate lady. Thanks for sharing your experience.
@stevesilberman Kudos on the column — what a powerful read. Thank you for sharing your mom’s story, and I’m glad you were finally able to find a caring place for her.
And a complement means that a quibble will follow. It is the phrase “one of the forms of age-related cognitive decline”. Dementia is not limited by age, a number of cases go undiagnosed because the physicians insists that their patient is too young. My wife was diagnosed with Frontotemporal Dementia (FTD) in her 40s. While a minority of people with dementia there are many with younger onset dementia.
@stevesilberman Powerful read, I am not gonna lie, had me tearing up on the last two paragraphs. While my mother didn’t suffer cognitive decline, she suffered physically towards the end. I’m just so thankful we were able to keep her in her home til the end.
@stevesilberman I learned important things about my mother through her dementia. Based on her rambling and delusions, it's clear that anti-semitism and WWII played a significant role in her life. During her last year, she often felt persecuted and attacked for being Jewish and even talked about knitting socks for the soldiers which she had never mentioned to me before. Fascinating.
@evewrites One of the things I left out of the article was my mother claiming that the caregivers at the Bad Place were saying anti-Semitic things. I doubted it, then found some matzo that a rabbi had brought her for Passover stuffed behind a TV set by a caregiver.
@stevesilberman Oh! My mother mistook the building handyman for her grandson (slight resemblance). When he didn't respond to her as such, she told me it was because he didn't want anyone else there to know he was Jewish. Another time, she told an aide who was asking about an ulcer on her leg that it occurred when someone kicked her because she was Jewish.
@stevesilberman What a beautiful and heartbreaking story. I had to place my mother in a memory care facility after my father died in 2022. She had Alzheimer's Disease and my father was her caretaker with outside help near the end. They lived far from me and I wasn't able to visit very often. I continued to employ her caretaker to visit several times a week and the reports were pretty bad. Mercifully, my mom died shortly afterwards--she never wanted to live that way and without her husband.
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