How My Mother’s Dementia Showed Me Another Side of Neurodiversity

How My Mother’s Dementia Showed Me Another Side of Neurodiversity

My late father, Donald, an English professor, raised me to appreciate great literature. But it was my mother, Leslie, who taught me to love words. She would sit with me for hours on the couch, pointing to words in books and magazines, and patiently enunciating them, bantering with me in an inexhaustible volley of puns, spoonerisms and goofy double entendres. This wordplay came naturally to my mother, a kind of jazz. It was the music that bound us together through the decades as I became a writer.

Then in 2017, my sister Hillary, who lived with my mother, noticed that Leslie had started losing the plot of classic films they watched together on TV. After a series of tests, our mom was diagnosed with vascular dementia, one of the forms of age-related cognitive decline that currently devastates 57 million people worldwide. Naturally, she came up with a million ways to subvert the ominousness of the diagnosis, calling it “the dreaded D-word,” or pronouncing it with exaggerated awe, “DI-MEN-SHA,” like the name of some alien nemesis on Star Trek.

For the first few years, our mother was able to use her wit to cover for her eroding cognitive abilities, improvising alternate—often more spicy or colorful—bridges of syllables if the initial attempt to call a word to mind failed. But then COVID came. The isolation of lockdown accelerated Leslie’s cognitive decline and loss of mobility, and our increasingly frequent phone calls became her primary source of social contact. Eventually her physical needs became overwhelming for my sister, and we placed Mom into what’s called a “board-and-care” home that came highly recommended. Though the facility touted compassionate memory care on its website, it soon became obvious that many of the caregivers knew astonishingly little about dementia, other than finding it an annoyance in the residents. Instead of hanging up the handset of my mother’s landline when she lost the dexterity to do so herself, the head caregiver—an imposing woman my mother ominously started calling “the Boss Lady”—would text us photos of her phone off the hook.

I reached out to the Boss Lady several times to ask if there was anything we could do to make caring for our mother less of a burden. “These people are driving me crazy,” she replied.

Our mother started telling disturbing stories about what was going on at the facility, often with pleas to come rescue her and bring her back to an apartment she no longer lived in. “They’re tossing me out in the street tomorrow,” she’d say, “and I have no money for a cab!” She’d claim that the caregivers were putting alcohol in her drinking water and giving her pills to make her more demented. She started saying “I’m a smart woman” over and over, which was heartbreaking to hear from a former teacher who once ran for Congress as an independent candidate.

Then her claims grew even more alarming. She would say that a caregiver had shoved her to the floor, but she was unable to specify even the gender of the person who had allegedly done it. At first, we would rush over to the home and check my mother for bruises or other marks of physical abuse, but we never found any.

As I frantically read through dementia-related books and websites, I learned that paranoia and delusions are common as the disease progresses. My mother, I concluded, had become the unreliable narrator of her own life.

In previous eras, disputing these delusional beliefs was considered essential to keep the patient grounded in the real world. But the current thinking among dementia experts is that going along with relatively harmless delusions is more compassionate, a strategy known as “therapeutic fibbing” or “validation therapy.” A former nursing home in the Netherlands, for example, transformed itself into a little village called Hogeweyk with gardens, a pub and a supermarket; in truth, the residents are people with dementia, and the gardeners and cashiers are caregivers. This circumvents nightmarish situations like a parent having to learn several times in a day that their spouse died years ago, but it also creates knotty ethical questions for family members as their loved one’s view of reality increasingly diverges from their own.

I felt profoundly conflicted. As the author of a history of autism called NeuroTribes, I’d fought against the idea that autistic people are unreliable narrators of their own lives. I’d been telling families for years that it’s crucial to pay close attention when their kids seem frightened by a certain aide at school, particularly if the child is unable to speak. I’d learned to stop thinking of autistic people as failed versions of “normal,” and I started seeing them instead as folks with a common disability who deserve support to be happy and thrive.

In the autistic community, focusing on building these supports, rather than on funding an endless quest to find a cure for autism, is called honoring neurodiversity. Yet here I was, discouraging my own mother from talking about her experiences as she called every couple of hours to bring me up to speed on the latest conspiracy against her. Could dementia also be considered a form of neurodiversity, while also being a pathology?

Then, one horrible day, my sister and I realized that our mother had been telling the truth—if not the literal truth, her emotional truth. I had arranged for a new physical therapist to visit Leslie at the care home, but as the therapist worked as a nurse during the day, she wouldn’t be able to arrive until after dinner. The Boss Lady wouldn’t hear of it. “We will NOT change the rules for your family!” she bellowed at ear-splitting volume. After another caregiver took us aside and advised us to report her to the facility owner, I posted a desperate cry for help on social media to find a new placement for Mom. An old friend, Taara Hoffman, who is now a care manager for people living with cognitive impairment, reached out to her network and found an opening at a facility called Ivy Park at Cathedral Hill.

We found the community cheerful and inviting, with sunny gardens within its specialized memory-care facility, and a daily round of activities to keep the residents alert and engaged, from sing-alongs to flower arranging. Within 10 minutes of arriving, my mother was singing “I Left My Heart in San Francisco” in a circle of her new neighbors, instead of cowering alone in an uncomfortable chair in front of the TV, as she’d been forced to do for two years. While the Boss Lady had always lorded over the residents, literally talking down to them, I noticed that the head of memory care at Ivy Park, Joy Quilet, squats down when she talks to residents in wheelchairs, so she’s looking up at them. Her respect for the people in her care is obvious, and my mother no longer insists that she’s a smart woman, now that she’s being treated like one.

The smart woman who taught me to love words is inexorably losing the ability to form coherent sentences. But when my mother looked out the window of her new room, she said, “I know I’ve been here before.” I was about to correct her when Taara jumped in and said, “That’s such a great feeling!” In this case, my mom’s delusion proved to be another way of saying that she felt safe at last. The other day when I visited, she whispered, “Thank you for hearing me.”

This is an opinion and analysis article, and the views expressed by the author or authors are not necessarily those of Scientific American.

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