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Nonfiction

The H-Word: Dementia and the Writer

My eighty-five-year-old mother, who has been living in a board and care facility since August 2017, recently told me a remarkable anecdote: when I was eleven, there was a big story in the news about a missing thirteen-year-old girl. One day, Mom and Dad spotted the missing child on the street and brought her home, where she stayed with us for a few days until the authorities arranged to get her back to her family. What gave this story its real punch ending was my mother’s discovery that another one of the residents at the board and care was that little girl, all these years later.

What’s most remarkable about this story is that none of it is true. No little missing girl ever stayed with us. The resident my mother believes is that child grown up is at least thirty years older than me. And yet my mother told me this story with great sincerity and excitement.

My mother has suffered from dementia for about ten years now. Her disease is not Alzheimer’s, but rather vascular dementia, which is less common than Alzheimer’s—it’s the cause in about ten percent of dementia patients. Mom’s dementia first presented as simple forgetfulness, but it progressed. An MRI revealed that she’d probably had hundreds of transient ischemic attacks (TIAs), also known as “mini-strokes” (although she’s never had a full-on stroke). But her symptoms also had a definite pattern of worsening every few months, and we soon linked this cycle with recurring urinary tract infections (UTIs). Another round of antibiotics would kick back the worst of the dementia symptoms, but for several days, at least, she’d be plunged into a world of paranoia and horrors.

In January 2015, I became her live-in caregiver, and during the two-and-a-half years that followed, my life was upended in ways that even I, the horror writer, could never have imagined. I was awakened at four in the morning to find her standing in the dark over my bed asking about the strangers in the house; I was snapped out of sleep by a piercing shriek she had no memory of in the morning; I heard fearful tales of people who lived in our closets. Some of the delusions were worked out in extraordinary detail, with time-frames and names (like “the Fay Brothers,” ruthless entrepreneurs who’d rooked Mom out of an island she owned); others brought on fits of temper (during one memorable emergency room visit, she was so aggressive that they kept her overnight for observation, during which time she had to be strapped down).

I probably don’t need to add that my mother, as a younger person, was the calmest and most cheerful individual I’ve ever met. I considered her to be my best friend, although she often wished I wrote some other form of fiction. She only read a couple of my stories, and they disturbed her too much to read more.

Now, of course, it’s almost as if she’s living some of them.

This is not a source of rich irony to me; it is, instead, a tragedy and a bewilderment. Where does she get some of these elaborate stories? Even some of her doctors and caregivers are astonished by the complexity of her delusions. Is her brain processing reality in the same way that mine accesses writing? Or—a far more unsettling thought—are some of her delusions inspired by my fiction?

Over the last ten years, there have been several studies that have investigated the relationship between creativity and dementia. They’ve found that involving dementia patients in some form of creative endeavor—usually painting or music—seems to provide relief from both the depression that often accompanies dementia and the dementia itself. Another study suggested that getting dementia patients to try creative writing helped them to maintain a sense of self.

Sometimes the stories Mom tells me sound like bits cobbled together from television shows (a lengthy story from a month ago involved a young man named Chip who was painfully transitioning from female-to-male, and Mom was comforting him by telling him how masculine he looked). But more often they seem to be patched-together memories, as if somehow her memories have come loose from their moorings and are colliding with each other in her mind. For example, in the story I related about the missing little girl who stayed with us, she first mentioned that the little girl was black; when I was eleven, one of my best friends really was an African-American girl named Delilah.

The more frightening and fanciful tales—of strange men crawling in through her window at night, or a ritualistic killing of me (which I had to disprove by promptly driving to the board and care)—actually seem to be fairly commonplace for dementia patients, although they more often center on paranoid notions like “the nurses are stealing from me” than my mother’s terrible visions. Again, I have to ask which of us inspired the other. Is this nature or nurture at play?

Ultimately, I’m left wondering if this is the future for me. Am I living some early version of dementia by grabbing these stories now, and committing them to pixel and paper? Will genetics be my undoing, leading me down the same delusional rabbit hole?

In July of 2017, Mom had a UTI that failed to respond to antibiotics and moved into pneumonia. During the resulting week in the hospital and three weeks in a convalescent facility, the doctors all advised me against continuing to care for her at home. We received assistance in placing her in a fine board and care, which is a comfortable house with an attentive, caring staff (and even a dog). In the past, she always bounced back from these occurrences of severe dementia and delusions, but this time the doctors think that’s unlikely. All we can do now is try to keep her calm and happy (and treat her UTIs quickly). When she spins out her stories, I try to listen and respond as appropriately as possible.

Maybe all either of us really wants is an entertained audience.

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Lisa Morton

Lisa Morton is a screenwriter, author of non-fiction books, and award-winning prose writer whose work was described by the American Library Association’s Readers’ Advisory Guide to Horror as “consistently dark, unsettling, and frightening”. She is the author of four novels and more than 130 short stories, a six-time winner of the Bram Stoker Award®, and a world-class Halloween expert who has been interviewed by The Wall Street Journal, Real Simple Magazine, and The History Channel (for The Real Story of Halloween). She co-edited (with Ellen Datlow) the anthology Haunted Nights, which received a starred review in Publishers Weekly; other recent releases include Ghosts: A Haunted History and the collection The Samhanach and Other Halloween Treats. Lisa lives in the San Fernando Valley and online at lisamorton.com.