Life Matters Media
Quality of life at the end of life

“They Put Me in Places”— A Dementia Caregiving Story

This essay was originally published in The Huffington Post. Re-posted with Jacobs’ permission.

“They take me—take me and put me in places,” my 86-year-old mother says again. She stammers as if unsure how to describe her baffling experience. Her deeply lined face has a look of discomfort and dread. “Various towns and facilities,” she says haltingly. Then, after a pause, “A shtetl. A kind of shtetl.”

The “they” she is referring to are the nursing home personnel whom she doesn’t particularly trust, even after a year of residing here. She often bridles at their directions and suggestions. Perhaps she specifically means the certified nurses’ assistants about whom she constantly complains for their rough and infantilizing treatment.

Her reference to “shtetl”—a Yiddish term for the small Jewish towns of pre-Holocaust Eastern Europe—is more interesting to me. Her parents came from such a place on the Bug River in eastern Poland and raised my mother and her two siblings in a 6-story walk-up in a poor, heavily Jewish neighborhood in the south central Bronx in the ‘30s and ‘40s. My mother then moved over her lifetime to a succession of Jewish “shtetls” in Queens, Long Island and South Florida before landing in this Jewish nursing home outside of Philadelphia near my home. In my opinion, she has never left the shtetl and now never will.

She tells me sometimes about seeing people who have been long dead.

As a clinical psychologist specializing in geriatrics and family caregiving, I know how one is supposed to respond to a loved one’s confusion due to dementia—with calm, good cheer, and tolerance. As I’ve pointed out to many of my family caregiver clients, becoming upset and trying to correct some bizarre or paranoid idea rarely creates cogency. Instead, it tends to provoke more agitation and therefore more confusion.

But the son in me, bothered by my mother’s bewilderment, can’t simply humor her. “You’ve been here the whole time,” I tell her. “They would have to tell me if they were moving you somewhere.” My mother just looks at me blankly. “If they took you somewhere,” I ask her, “then how did you get back here?”

“I don’t know,” she at first responds. But then she adds, “I took a bus.” I look at her slumped in her wheelchair, knowing she hasn’t been on public transportation for years. It’s folly, though, for me to think that I can re-orient her with mere facts or logic.

Later on, when we call my brother on my cell phone so that she can speak with him, she repeats the story of being moved to various places. I can hear him trying to re-orient her by asking her why they would keep moving her. She responds by saying, “Different strokes for different folks,” one of the cliché phrases she now sometimes uses that have no meaning in and of themselves but which she repeats as a face-saving measure for not knowing what to answer.

There is no end to the confusion. She tells me sometimes about seeing people who have been long dead. She asks me if her parents are still alive. “Of course not,” I say too brusquely. “Really?” she asks, astonished. I shouldn’t be taken aback by her astonishment—it’s the nature of the disease—but I always am.

On the car ride home, I muse about the hour spent trying to sort out what is going on in her muddled head. Could there be some meaning behind her delusions? To be moved without her consent from place to place, as she believes, is to feel a constant state of dislocation and vulnerability that well captures the lost-ness of advancing dementia. There is uncertainty and fear, helplessness and hopelessness, and an awareness of being unmoored.

To believe you are being moved to shtetls conjures other associations for me—and not the ebullience of Tevye in “Fiddler on the Roof.” My mother may have lived in increasingly Americanized versions of Eastern European villages her whole life but she always wanted to escape the ignorance and impoverishment of her parents’ past. There is no leaving that shtetl now (not even by bus). There is no avoiding that sense of being at a cultural and spiritual dead-end. No more middle-class striving. No more embrace of high aesthetics and world travel. No more fancy dresses and sparkly jewelry. Her experiences of today are conflated with memories of her mother’s modest house dress, her father’s aching hands from his work as a window washer.

I’m not sure how to help my mother now. She drifts in her mind to strange and familiar places. I follow, providing what little company, comfort and direction I can.