The Nightmare Comes Knocking

When Death Becomes the Lesser of Evils

Inuit Sculpture, at the Art Gallery of Ontario

It’s not death my mother ever feared. It was everything just before it. Being carted from her beloved home by emergency services and stuck in a hospital, all ferocious independence forfeited. She had carefully prepared alternatives. She stuck her DNR by the front door. She filled in her medical wishes. Way back in 2003, when severe spinal stenosis brought her life-as-she-knew-it to a suddenly excruciating halt, I accompanied her to Dignitas in Switzerland. She got the prescription that would give her control of her exit. But she never used it (80% of people don’t, but they breathe easier knowing they can). In 2016, Trudeau’s Canada legislated a highly civilised form of assisted dying called MAID. It has been widely accepted and quietly successful. My mother supported this Dying with Dignity campaign for years. Yet she lived – on her own in my childhood home - almost two decades after that Swiss trip, thanks to an astonishing array of powerful pain drugs.

Now, at 96, she’s been caught by her seeming reluctance to exercise her past preferences. Instead, a painful incident, a neighbour who kindly checked in on her, and off she was sent to hospital in an ambulance. A week later, she has been transferred to hospice, with only a single wish in her newly-wandering mind: she wants to go home. She repeats this to every doctor who asks her if she knows where she is, or what month it is. She repeats it to her children, who rushed to her bedside and are wondering whether it’s feasible to safely make her wish come true.  She repeats it to her best friend, a few years her junior, who checks in on FaceTime. “You, at least, are still at home,” she tells her, enviously - and single-mindedly.

She has become a fraction of the fraction of her former self. I have lost my mother in successive layers. The warm, funny, decisive mother left decades ago. I long ago grieved the loss of one of my closest confidantes and role models. I have been dutifully caring for her substitute ever since. She has spent long, lazy summers with us. We have trotted over to visit every freezing Canadian winter. Now, we’re discovering yet another version of my ‘mother.’ This one is tiny and sleepy and sad - and angry at me. I have organised most everything in her life for years now, so she quite logically assumes I’m also responsible for this latest turn of events. Why am I keeping her here? Why am I leaving every evening? Why am I going ‘home’ without her? Her anguish is as acute as her understanding is enfeebled. Both strike me to the core.

This isn’t what she – or I - planned for. This isn’t what she told me she would do or become. I’ve been raised and schooled and drilled to plan and facilitate an orchestrated, ritual departure, surrounded by her beloved family. Instead, like her, I’m hostage to a surreal turn of events. Hospitals are a parallel universe with language, rules and an entire time zone of their own.

So here we sit, she and I. In a beautiful, calm hospice room in Toronto, staring rather glumly at an extraordinarily beautiful view over a ravine afire with autumn leaves. I feed her Smarties, her new favourite food, one by one.

It’s not the end I fear. It’s everything between here and there.