Automatic Pilot

“Get me out of here! Now!” she cried out each time I arrived at the non-descript institutional doorway. Her dementia had descended in cruel full force and she needed the 24-hour care we could no longer provide at home, especially as my father was now stuck in hospital for an extended period. At 89 years old, he had been her chief caregiver for many months and was now spent, exhausted and seriously ill.

I did not anticipate the period in which both my parents would be ill and needing special care. He was seven years older, and we all just assumed she would eventually windup as his caregiver. Today it is all a bit of a blur. I was working long hours at my job, with a young daughter to raise. When it became clear my mother had to move into a nursing home, it was my partner who camped out on her couch, staying with her for two full days and nights. Patience finally paid off and he gently persuaded her to leave the apartment with him. She took his arm trustingly to make the short trip to a new reality, suitcase in hand.

She was to live in a facility in North Toronto. One of the better ones, my siblings and I were assured when we visited and interviewed the staff some weeks before. Promises of good care aside, it was still an institution, with all the drabness and smells that conjures. Pale green walls. Shared bedrooms and a huge dining area populated by the elderly, four to a table, not necessarily engaged in conversation over their rice pudding.

While visiting her, I found it was safest for me to switch into a kind of “automatic-pilot”. First thing I’d hear as I emerged from the elevator were the heartbreaking whimpers of old people plunked in wheelchairs and lined up in rows outside the nursing station. Walking past them as they pined for a visitor, sometimes reaching out a scrawny arm, was a hideous, disconcerting experience for me.  Human train wrecks. Their lives now empty canyons, I would hurry by, discomfited and focused on my own train wreck – my mother Jacqueline.  

Here she was in a care home where one morning she would fall getting out of bed and break her hip, because she didn’t remember that she needed her walker to get to the washroom. Staff couldn’t be in all places at all times and accidents happen. But there’s an ironic twist to the story.

Jacqueline was a well-respected geriatric social worker, a pioneer and published author, an expert on the clinical care for people with dementia. Once when I was visiting early in her stay, she referred to the “other” social worker on the floor, meaning the fellow who actually was employed by the nursing home. She had spent so much of her life working in that role that it was deeply ingrained in her very being, her definition of self. She would point out to me, as we made our way from her room to the dining area, when she thought spilled water should be mopped up immediately, before someone slipped and got hurt. It was actually heartening to see this smidgen of her identity still holding tight when the illness had already stolen so much.

She never forgot our names though her short-term memory was quite impaired. She was often confused. When my father eventually died, her grief was overpowered by memory loss, although she still occasionally said she had to get home to make his dinner. At that point she was cared for on some days by a lovely, skilled young woman and my mother seemed to enjoy her company a great deal. I once came upon them giggling like schoolgirls and it was clear that at that stage, she still had joyful moments. I suppose it was a small mercy that she seemed to forget my father, her husband of more than fifty years. The grief was likely less painful for her.

But to be clear, and especially as the weeks passed, she was by no means a calm, sweet elderly person folded into a wheelchair. She was pissed off. At being cognitively impaired. At having to stay in the nursing home. Maybe at some level she got the cruel irony of her illness and anger emerged as her principal demeanour.  She was downright unpleasant a good deal of the time. Unfortunately, as with many elderly people, the broken hip had signalled a downward decline. My mother was no exception and within a matter of months, she died.

I did not know that the “automatic-pilot” state I adopted wading through the wheelchairs at the care home would last until now, almost fifteen years later. It is only recently I’m experiencing something akin to a thaw. Tentatively, I am feeling able to remember more about my mother, from a time before the ravages of the illness. 

I’ve started to dredge up feelings about her at different times in my life. As a little girl I was always so proud of her. What a terrific role model. She worked outside the home and managed the family. This was not as common in the early 1960’s. I knew she was doing important work, helping people. I always assumed that I would do the same – have meaningful work and raise a family too.

She was a gregarious woman, very sociable and a good listener. As a teen, my friends used to call her for advice. She arranged an abortion for at least one young woman in my circle (pre- Morgentaler). They trusted her. I was more reticent.

It was the normal kind of separating out that daughters do from their mothers. In my twenties we didn’t talk as much. I was living my own life, devoted to my job in a city far away. Visits home were sometimes stressful. My parents were eager for grandchildren and my trajectory in that lane was haltingly slow.

I miss her now, realizing how much I’ve lost of the good memories.  From a young age, she instilled in me a sense of my own worth as a person and the need to be independent financially. She was incredibly accepting when I told her, fearful of her reaction, that I’d been infected with an annoying STD. She simply wanted to assure that I had good care, and made no judgment about it. 

Some years later, she was the first person to tell me, when my infant son was so ill and so profoundly disabled, that I might choose not to care for him full-time at home. I wasn’t ready to hear it at the time and, in fact, felt quite vexed at her suggestion. But eventually, after he had succumbed to non-stop seizures, was unable to digest liquids without a feeding tube inserted into his tummy to bypass his raspy breathing and, suffered umpteen other complex medical conditions, I began to see her point. The crux of her message was not about my readiness to tackle such a challenging situation. Rather, she was to giving me permission to consider a life in which I would mother at a distance — with the full 24-hour nursing care support my baby needed — but remain fully involved in his care.

These were small gifts. Testimony to her unconditional love for me and that she was practical to the core. Free of judgment but not afraid to express her opinion. The cruel illness that enveloped her in the end can’t erase the years of generous mothering she offered me. I can’t purge that awful last year of her life but as I inch away from the shock, anger and bewilderment that captured me for such a long time, I am grateful for her love and guidance.

Published by medelson64

Miriam Edelson is a neurodivergent social activist, writer and mother living in Toronto, Canada. Her literary non-fiction, personal essays and commentaries have appeared in The Globe and Mail, Toronto Star, various literary journals including Dreamers Magazine, Collective Unrest, Writing Disorder, Palabras, Wilderness House Literary Review and on CBC Radio. She was a finalist in the Pen 2 Paper nonfiction contest. Her first book, “My Journey with Jake: A Memoir of Parenting and Disability” was published in April 2000. “Battle Cries: Justice for Kids with Special Needs” appeared in late 2005. She completed a doctorate in 2016 at University of Toronto focused upon Mental Health in the Workplace and is currently at work on a collection of essays. She lives with and manages the mental health challenges related to bipolar disorder.

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