When my mom was finally, officially diagnosed with dementia in 2020, her geriatric psychiatrist told me that there was no effective treatment. The best thing to do was to keep her physically, intellectually, and socially engaged every day for the rest of her life. Oh, OK. No biggie. The doc was telling me that medicine was done with us. My mother’s fate was now in our hands.
My sister and I had already figured out that my father also had dementia; he had become shouty and impulsive, and his short-term memory had vaporized. We didn’t even bother getting him diagnosed. She had dementia. He had dementia. We—my family—would make this journey solo.
I bought stacks of self-help books, watched hours of webinars, pestered social workers. The resources focused on the basics: safety, food, preventing falls, safety, and safety. They all hit the same tragic tone. Dementia was hopeless, they said. The worst possible fate. A black hole devouring selfhood.
That’s what I heard and read, but it’s not what I saw. Yes, my parents were losing judgment and memory. But in other ways they were very much themselves. Mom still reads the newspaper with her pen, annotating “Bullshit!” in the margins; Dad still asks me when I’m going to write a book and whether I need cash to get home. They still laugh at the same jokes. They still smell the same.
Beyond physical comfort, my goal as their caregiver was to help them to feel like themselves, even as that self evolved. I vowed to help them live their remaining years with joy and meaning. That’s not so much a matter of medicine as it is a concern of the heart and spirit. I couldn’t figure this part out on my own, and everyone I talked to thought it was a weird thing to worry about.
Until I found the robot-makers.
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