Dementia

Time is circular.

Or so you’d think if you listened to what my mother says, the various iterations of a conversation slipping through the cracks of her memory, reused and recycled ad infinitum.

Memory does not persist.

Instead, the allure of rebirth too enticing, it devours its own tail.

Tina Arkee
Nashville, Tennessee

*An Ouroboros is an ancient symbol of a snake or dragon eating its own tail.

I can’t delete her voicemails. They span over a decade of my life and offer a lifeline to a woman who shaped it.

My grandma wasn’t related to me; she was a customer at the bank where my mom worked in Las Vegas. She chose to love my mom and, eventually, my brother and me.

I spent my childhood chasing her cat, Marmalade, around the house and telling stories with a flashlight under my chin. She taught me to knit using a mirror—because “lefties knit, too.” She made sure my brother and I learned to play the piano, like all her grandchildren.

When we moved to Vermont and later to California, she called my mom every day. Pictures of us, two brown children, sat beside photos of her own grandchildren on her nightstand.

We all need one cherished relative—someone who knows exactly what to say to you when things are spiraling out of control, who guides you through life’s stormy seas. For me, that person has always been my mother’s youngest brother, Uncle Jack.

From my earliest memories, Uncle Jack has been a steadfast figure in my life. When my childhood home was fraught with tumult and chaos, his house became my sanctuary. His children embraced me like a sister, and in that loving environment I always found solace.

“Here are some things Dad brought back from moving Grandma,” my mother said, as she placed a box on my dining table. It was filled with objects from my grandmother’s apartment. My father and aunt had just spent a week relocating their mother to a memory care facility and, having little time and many items to sort, had culled out a few things that they thought might be meaningful to me.

I looked through the box. It contained primarily framed photos, most of which were of my growing family in recent years: pictures and holiday cards I’d sent to keep her connected from a distance. Why did he give these back to me, I wondered. What am I supposed to do with them? They were intended for her; they could serve the same purpose even if she was now in memory care.

My mother stood at the edge of dementia, a wide and terrifying river.  She turned around, glancing back at me with her blue eyes sparkling, her arms outstretched. And then she waded in. I could not reach her in time to keep her safely on shore.

In the early stages, there were days of clarity when Maman would lift her face to the sun, wave in recognition to those of us she’d left on shore, beckoning us to join her. But it was not long before swift currents ensnared her, taking her farther and farther away. Her emotions and memories swirled menacingly as time and place no longer anchored her. She would cry out, “What is happening to me?”

Many people are afraid of developing dementia, which is increasingly common as we live ever longer. I have a compelling reason to harbor that fear.

My paternal grandmother developed dementia in her early sixties. The diagnosis was made without any of today’s imaging and biomarker techniques, but the course of her decline, it’s clear in retrospect, was typical for Alzheimer’s. Luckily, she never lost her sweetness or her Southern-ness: she remained hospitable and cheerful to the end, politely hiding her pills under her linen napkin.  One afternoon during a drive through the rural South, she kept promising us that the White Cliffs of Dover were just over the next hill!

One of the first house calls I made during my internal medicine residency many years ago was to visit Mr. R: a 70-year-old veteran, retired electrician, devoted grandfather, and church volunteer who’d shown signs of memory loss for six years. His forgetfulness was initially dismissed as “senior moments.” Then he forgot his wife’s birthday—something he’d never done in 40 years.

The turning point came when he got lost after picking up his grandson from school. They were finally found two hours away, where a flustered Mr. R had been driving in circles. Taking away his car keys was traumatic, and subsequent memory testing confirmed a probable diagnosis of Alzheimer’s disease.

(This story arose from a prompt to write a brief memoir inspired by an excerpt from a poem. The excerpt I chose, from Hafizah Augustus Geter’s poem “Paula,” was “a storm suddenly opens its jaw.”)

The luncheon started innocently enough. My friends and I were talking about indisposed spouses, some temporarily, others more seriously—like milk that had started to spoil but was still potable. Mine was heading closer toward curdled each day, but in small increments. Even so, thoughts of the future were harder to entertain.

Grandma was famous in our family for her cinnamon buns. Born in 1900, she was of the age of never following a recipe. My sister and I would ask her how to make cinnamon buns, and all we got was “watch me.” We wish we had watched more closely and taken notes.

When Grandma announced she was moving to assisted living, we were surprised, as she appeared to still have good health other than somewhat weak legs and poor hearing. Her cognition seemed fine, and we never worried about her living alone. But now in her eighties, her older siblings had passed,  and her youngest sister lived four hours away. So when she chose a group home owned by a great-niece, we thought all would be well.

“I don’t want to live with this,” read a note we found afterward. “Just let me die.”

At the time he wrote the note, Dad had recently been diagnosed with cognitive impairment, often a precursor to Alzheimer’s; years earlier, his uncle had suffered from what was then called “senile dementia.”