“Get me out of here! Now!” She cried out each time I arrived at the non-descript institutional doorway. Her dementia had progressed with cruel force and she needed the 24-hour care we could no longer provide at home, especially as my father was now stuck in the 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 in need of 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 as a trade union human rights specialist, with a young, almost teenage daughter to raise. My life was already full when they became ill.
When it became clear my mother needed nursing home care, it was my partner who took the baton. He 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 well-regarded facility in North Toronto. When we visited and interviewed the staff some weeks before, we had been assured they would provide good care. But 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, sitting 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”. A mix of shock and bewilderment, a tremendous will to function above all. I was the oldest daughter and had a role to play in ensuring she wanted for nothing. (Except her freedom, which I could not give her.)
First thing I would 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 did not remember that she needed her walker to make it to the washroom. Staff could not be in all places at all times and accidents sometimes occurred. But there is 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 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 heartening to recognize that this smidgen of her identity was still holding tight when the illness had already stolen so much.
Though her short-term memory was quite impaired, she never forgot our names. 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. For the most part, she was pissed off. At her diminished capacity. 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 the 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 that I am experiencing something akin to a thaw. Feelings and memories now seep through the protective ice blocks I once erected. I am recalling glimpses of my mother, from a time before the illness ravaged her.
I have started to dredge up feelings about her at different times in my life. As a little girl, I was always so proud of her. She worked outside the home and also managed the family. This was not as common in the early 1960’s. What a terrific role model. 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, assuming reticence, kept some emotional distance.
It was the normal kind of separating out that daughters do from their mothers. In my twenties, we did not 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 I had been progressing haltingly in that lane.
I miss her now, realizing how much I have 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 had 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 was not 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, and was unable to digest liquids without a feeding tube inserted into his tummy to bypass his raspy breathing, I began to see her point.
The crux of her message was not about my readiness to tackle such a challenging situation. My son could live in a palliative care home and I could remain intimately involved in his care. She was giving me the permission to consider a life in which I would mother at a distance and my baby would get the full 24-hour nursing care support he required. That turned out to be enormously liberating.
These were small gifts. They are testimony to her unconditional love for me. 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 cannot erase the years of generous mothering she offered me. I cannot purge that awful last year of her life. But today, as I inch away from the shock, anger and bewilderment that captured me for such a long time, I am reminded more of her love and guidance and remain grateful.