Model sailboat on ocean

AUTOPHONY: The sound of living inside a mother’s dementia

Last updated: April 2nd, 2019

Tripping on sounds, I hear birds outside my window, muffled, over the swish-throb of a heartbeat in my ears, a pulsing slightly alarming and soothing all the same. I also hear a dish clanking outside the closed door of my room, emanating from the kitchen where I imagine my mother is sitting, skeletal and serene in her wheelchair, gazing off through the filmy stare that inhabits her face now. The cataracts of her mind’s eye reaches some unknown space outside or inside her head that swirls and lulls the cerebral juices to twitching stillness, her jerking to and from that space in split-second recognition of a face, idea, song slice or voice. I imagine her waiting like the baby bird with beak wide open in anticipation of its mother’s nurturing tongue, depositing the meaty worm of egg or pear. She is spoon-fed now.

Where are you, Mom?  I miss you hard like a crowbar to the back of the head. 

My thoughts cannot stay on task. My self-imposed inspiration today is directed to my ears. Listen. It’s nearly impossible to hear the murmur of soft uttering spoken outside my closed door, coos enmeshed with frenetic blather-blurbs of television banter of I know not what over the din in my brain.

I hear her dully, though. She calls my mother’s name over again sweetly, as if to a child, “Doris… Doris… Are you hungry?” The caretaker asks.

The answer is unintelligible, bbbuhbbbuh, but of course she’s hungry. Her mind does not remember satiation. She, who ate more for comfort than survival, dieted constantly, losing hundreds of pounds over her lifetime, and is now, ironically, the weight her doctor claims befits her small frame no one knew was there. She always felt fat, was fat because she said so. And my father confirmed it, except for the time she lost fifty pounds and he said she was too skinny, so he brought donuts and candy home for her to eat, the very same items he would chide her for eating when he reminded her that she was fat. His was always a savage love.

You are a saint. I cannot blame you for checking out, Mom. I want to be where you are only too often, though I’m afraid of dementia’s detritus. You are braver than I ever will be.

My mother has Lewey Body Dementia (LBD), un-diagnosed only because medicine shrugs at cloudy, geriatric incurable diseases doffed off as old age. Approximately 1.4 million in the United States are afflicted with LBD, characterized by sleep disorder, memory loss, Parkinson tremors, neurological deterioration, sensory over-sensitivity and hallucinations. It’s a slow killer, an erosion of the human.

Medical facts and diagnoses unfold black and white on a computer screen—empty, meaningless letters in the face of a hollow that once bore life. Watching her recede into silence both pains and liberates me to paint gestures on her canvas. If I could be her inhalation, I could know.

momI observe her.

An undeniable ache inside slumbering craving, she must fall back endlessly, eyelids unfurling shutters; she slips down into darkness with the claws of consciousness still clutching and twitching, leaving indecipherable inscriptions behind eyeballs, the cords of which stretch wincingly, eternally extended for her body to lie upon in thick blindness. She goes deep.

I speculate that she has not fallen from her conscious self, implying a misstep, but has turned and run.

Who wouldn’t? Her life has been hard. She grew from neglect: an unloving mother born to cruel parents and a spectre-father who haunted the apartment, materializing only on payday. Her mother rarely cooked for, comforted or advised her, let alone prepared her for a perilous world.

“Where is your mother?!” the neighbours would ask a lone four-year-old girl walking the city block to fetch her dinner at the local five and dime. Ashamed, she would make up a story that her mother was sick.

But there was no diagnosed illness. That child with untameable, kinky hair that refused a brush even if one were offered, and a sizable gap in her two front teeth, roamed the street unkempt. She was scrawny and sallow with sharp, slit-eyed, hazel-glistening maturity and wit. She was a meerkat.

Eventually poking her head above the layer of grimy gutter life, she cleaned herself up and then mistook love for sex. Knocked up and married at 16, she merely survived a childhood of neglect to enter an adulthood of abusive banality and benign ignorance. She married, like her mother before her, a ghost of an unfinished man, a workaholic incapable of appreciating the finer things in life–books, art, mystery, passion, and romance, namely: her. Not until he lost her.

But he gave her a family. Children salved the sore of scooping-up-in-arms love she missed out on. Only to overcompensate for her own shadow life, she spent every moment caring for and worrying about her inevitably affected children of greed, helplessness and jealousy. She fed them too much, cleaned them overly, loved them enough but not enough for the canyon of need she created in them—to be the sole capturing eye of the gaze of her great giving.

She raised them. They came to visit on weekends with their growing families when they themselves grew up and away, but she, heliotropic, contorted her body, reaching for the circling sun of her prodigals who, in turn, rounded back to her, their heat centre for hot meals, unconditional love and sound advice. Warmed and wiser, they left her withered in the waiting for their eventual return. Until they didn’t.

So long as she could give, they came. When she could no longer give—her core like a moon of borrowed reflection—they stared, stammered and shivered in insurmountable loss and fear.

At first, she forgot how to make the dishes everyone loved from recipes passed down from her grandmother, the woman who cared for her but left her only too soon, days before her fourth birthday. Dishes that made home—their home—like blintzes, pirogies and beef stew, were irretrievably lost because her children forgot to ask her how to make them. She couldn’t remember how any of them started, though she made them hundreds of times over 75 years.

Nail biting in isolated anguish, her children suffered alone, for she didn’t understand what everyone noticed. Her husband alternately shrugged and shook fists at the sky. No one knew what to do with her. When she could no longer speak, they stopped coming. But she could see; she could hear. And for many years she still did.

Trapped in her muddled thoughts so long, wasting away, her body dis-remembering how to process food into fat or even how to chew and swallow, she closes her eyes now like no one has ever closed a pair of eyes before—her face drawn in by the corners of its angles of cheek bone to chin, skin sucked tightly to skull—and exhales.

No, she is not expired. She is pure unconscious desire now, streamlined to her essence and sinking into the only place she was ever going to anyhow. She succumbs to the lure of the lover and beloved, and it’s a release like no other in her candlelit dusty life.

She opens her eyes again and the illusion is gone. I can no longer see the purpose and direction, imagine the lilting lie of the siren’s song, “Come to me, my mistress and be my Penelope awaiting her king’s return. Rest in my bosom, my touch, my caress.”

This is how I cope these days with the agony of her slow decade-long disappearance. I imagine she’s on a mythic sea voyage, sailing the still waters of slow afternoon noddings, drifting down into the arms of her self-embrace, engulfed in the arms of the loving mother that she was born to be and always will be.

I stare into the searching, bewildered eyes mirroring a woman focusing her lenses and see me.

There it is! The three-second connect, her recognition marked by the eye twinkle and quick spasmodic flash of an upturned corner of her mouth, the missile memory launched in my direction absorbed by the heat of my desire. “Hi Mom.”

The sound distracts her. Her eyes move off mine in the direction she thinks the sound came from, the cataract gaze returned. I look away. I pick up my keys and move to the door, glancing back briefly before touching the handle. Her eyes cannot follow me at this distance.

I walk out the door. Her life blood pumping in my ears, it’s time to pick up my daughter from school.


image: Sailing ship model via Shutterstock
    1. Thank you, Max. My mother, a woman who spent 21 years taking one class at a time to earn her Bachelors of Arts and Masters in English Literature, would appreciate the description had she the werewithal.

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