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My father’s heart had been breaking slowly since 2008, when my mother began her descent into dementia. He watched helplessly as a bit more of her was stolen every day. In October 2017, when he made the wrenching decision to place her in long-term care, she joined the ranks of the 500 000 Canadians living in residential care facilities.1

After completing his PhD in Saskatoon in the late 1960s and passing the highest security clearance required by the Government of Canada, my father was hired as a nuclear research scientist. My mother arrived, in January, with two young children and a six-month-old baby, journeying on her own from southern India to Winnipeg without knowing any English. Unable to explain the unfamiliar food on the airline trays to her children, she fed them Ritz crackers from a box tucked securely under her daughter’s arm.

When I visited my mother in her facility, I never knew how I would be greeted. Would she be sitting at the dining table, her smile growing bigger with recognition as I walked toward her, reaching out to touch my face, her honey-coloured eyes bright with happiness at seeing me? Would she be lying in bed, or would we have to search for her because she’d ended up in the wrong room in her confusion?

I found her once, sitting on her bed, reaching her hands into her diaper, scratching, her fingernails discoloured, the bed sheets smeared with dried feces, her room and hands rank. As I herded her to the bathroom to clean her up, I wondered how she spent her days. A woman who had never stopped moving, once so vivacious and meticulous, now stilled and silenced, our names long forgotten, reduced to sleeping or staring at the ceiling by this unrelenting disease.

Running water, electricity, refrigeration, blenders, a stove rather than an open fire — these conveniences of life in small-town Manitoba made it much easier to feed and clothe a family compared with her small, rural Indian village. She learned quickly, providing her family with 3 delicious meals a day, clean clothes, a garden full of vegetables for the winter months for her and most of the town. She had no family here, no English. I wondered, did the loneliness of being an immigrant ever overwhelm her?

The inevitable trajectory to long-term care was set in May 2017. During a visit to India, already mentally and physically exhausted by caring for my mother, the summer heat overwhelmed my father. I flew to India to help him bring her home. Mom vomited on the way to the airport, tried to walk off the plane mid-flight, called out to her grandmother that a cup of rice would be enough to feed the entire family that day. I heard her young voice then, for the first time, and learned of the struggles she had faced to feed her family when she herself was a child. Struggling with my own grief at her lack of a childhood, I tried to still her hands, clawing at the seat in front of her. She did not sleep; the anxiolytic pills had resulted in agitation.

Like most girls in rural India, my mother was denied an education. When she was 11 years old, my great grandmother dragged her home from school, disregarding her tears. An education would lower her value in the marriage market. For a girl with an uncommon desire to be educated, this denial was sheer torture as it doomed her to a life of subsistence. Her only ticket out was to marry an educated boy.

My father, despite his physical and psychological exhaustion, was adamant that he would look after his wife at home. We pursued public and private home care to help. We were fortunate to have the financial resources, resources earned by my mother’s business acumen, self-deprivation and bare-knuckle hard work. In my youth, we did not have living room furniture, televisions or expensive cars. We did have great food and the best example of how to be kind and decent and generous, always mindful that we were responsible for those less fortunate.

As she looked after her family, she never forfeited her dream to be educated. Those hours at home alone were spent learning to cook all sorts of ethnic foods from the friends she made in that small town, from spring rolls to pierogies, cream puffs to German tortes. She also spent hours sounding out English words and solving math problems as she sat in front of her stove, until she graduated with a high school diploma.

After many stressful years as her caregiver, my father’s heart finally broke in the fall of 2017. As he left for the hospital with emergency services, he told my mom that he would return. She reached up, silently, with a smile, pulling his undershirt down to cover his exposed belly.

As my mother gained confidence, she held epic parties and hosted annual Christmas dinners for my dad’s graduate students, many of whom were far from their own homes and families. She established educational scholarships for the underprivileged in India and Canada, donated to charities that aided women, children and vulnerable older adults. And she insisted her own children study well.

My dad came home from the hospital with the realization that, if he died first, the burden of my mother’s care would fall on me. So, he put her name on the waiting list for long-term care. We had a tour on Monday and moved her in on Tuesday. He left for India for his annual trip on Wednesday and I transitioned my mother to her final home. Every night, I would clean her up, help her put on a fresh diaper and clean pyjamas, brush and floss her teeth, comb her hair, rub her feet, sit with her awhile, kiss her and tell her that I was going home and would see her in the morning. She would throw back her covers and start to rise, saying that she wanted to come home with me. So I would stay until she fell asleep, bid the aides goodnight and weep in my car.

The sameness of the days on the dementia ward was crushing. Some residents had visitors, most did not. I learned that, with dementia, the most profound human interaction is touch, something as small as holding their hands as they cried because they simply wanted to go home. When my mother could no longer speak, it was touch that allowed us to communicate.

Her facility, and the aides’ compassion and dedication to their charges, gave my dad new energy, a revitalized life; he was confident that my mother was safe in their care. I grew to love the people who worked so hard to give dignity and diversity to their lives at this, their final stop, despite sometimes shocking abuse from the patients in their care. When my gentle mother struck out, it was the aide who comforted me, saying it was fine, she knew how sweet and kind my mother normally was, that my mom wasn’t really hitting that hard.

The pandemic changed everything. In March 2020, we were prohibited from visiting my mother by provincial mandate. On his final visit, my dad stayed longer than usual. He contacted his children and took one final picture of her. In it, she is smiling gently at him as he weeps, explaining why he could no longer visit. She remained as silent as she had for the last few years of her life.

My mom was alone for two months, until it was clear that death was imminent. We were finally allowed to see her in her final hours. She was thin and unreachable by then.

Despite the nearly three years since her death, the vacuum and the isolation that we endured for those two months persist in my mind. Not only was I denied the opportunity to be kind and decent and generous, as my mother taught me, but the feeling that I had abandoned her when she needed me most continues to haunt me and sustains my grief.