Every Last Thing
When I woke up on December 27, 2024, this was my first thought: My mother has five hours left to live.
As humans, perhaps the most important mercy we have in this unpredictable life on this miraculous planet existing against all odds in a glittering yet unforgiving cosmos, is that we do not know when we will make our individual exits. How, when, and where we will die is a piece of knowledge that remains a mystery until the moment it becomes reality. While death itself is a certainty none of us escapes, the veil around its stake of claim lets us concentrate on other things in the meantime. You know, things like living.
Because what would day-to-day life look like if we knew the precise moment we would lose someone beloved? What would we think, what would we feel, what would we do if there was a countdown built into every day? How could we bear knowing exactly when they will leave us? A life partner. A child. A parent. Tick tick tick tick gone. The Universe spares us this exquisitely fateful knowledge.
Unless, of course, MAiD is involved.*
I remember opening the weather app on my phone that December to look at, as I do daily, the 10-day forecast. There were visitors always coming and going from my mom’s room in the long-term care home and I was expecting out-of-town family and friends at various points. Monitoring possible snowfall gave me some semblance of being prepared for the flow of people each day. The sight of it buckled my knees: December 27, in the tenth slot. My mother’s scheduled date with death was no longer an intangible point in the future. It was real, and in sight. It was there, in the palm of my hand. The forecast was appropriately sombre: overcast, chilly and damp, with a chance of rain.
Diagnosed with Progressive Supranuclear Palsy and already having lost use of her voice, ability to swallow solid food, and capacity to perform basic daily functions independently, my mother had chosen to end her life before the disease claimed any more of her dignity and quality of life. Suddenly, things that had been indefinite our whole lives carried the label “last.” When I wheeled my mom from the dining hall to her room after dinner each day, we’d stop at the touch screen at the entrance to see what was on the menu the next day. My throat tightened as we swiped through the choices she would have for her last lunch, her last dinner. While she waited to be served that final morning, she picked up her tablet and typed to me: “This is my last meal.”
One of the personal support workers who was the gentlest and most patient with my mom took her for her last shower. They were gone longer than usual for that final cleanse, letting the hot water wash away the grit of pain, fatigue, and grief that had accumulated on the body ravaged by the rare neurodegenerative disorder that trapped my mom inside it. There was the last word search she did in the puzzle books I bought for the ever-decreasing stretches of time she could sit comfortably upright in a chair and the last sentence of the story she read in the large-print novels I hunted down for her. I can see her still, using her finger to trace line after line of words, which was the only way she could engage with books as her condition deteriorated her eye movements.
Though I had been determined to record every detail of those final weeks with my mom — “I want to remember,” I said of the journal covered in a velvety blue fabric I bought expressly for making those concluding days indelible in ink — caregiving mostly trumped writing, and I have little memory of what our last Christmas Day together was like. Did we listen to carols? Did we watch a holiday movie? Who visited? I know the staff at the long-term care home had moved a cot into my mom’s room by that point so I could sleep there with her. I know she was still hilariously my mom with just two days to go until her scheduled final breath, pointing to my toothbrush sitting on the bathroom counter next to hers, noting the splayed bristles that indicated its cleaning power was past its prime and then vigorously gesturing to the waste basket to tell me in no uncertain terms it was time for a replacement. I also know I was racked with guilt for the duelling thoughts I had: one that wanted these last days to stretch out forever and another that wanted it all to be over, to be free of what felt like an excruciatingly slow march to the impossible-to-fathom moment when my mom’s life would end by her own choosing.
I thought, too, of the lasts we hadn’t known. Her birthday especially. What had I even done that year to mark her seventy-fifth, not knowing she wouldn’t be alive to see her seventy-sixth? What stupid chores had I been doing or work email had I been writing or bill had I been fretting about that April when I should have been celebrating the daylights out of her — blowing up balloons, encouraging her to drink champagne, making her laugh, making her dance (very slowly and very carefully, holding my hands), making her feel singular. Could I trade some of these mundane lasts — the last news report, the last sip of thickened water, the last trip to the bathroom — to get that one back?
Every last thing. How do we navigate living out what we know to be these final acts of the mortal experience with someone we love?
This is territory we do not yet know, or understand. We do not yet have the skills to navigate being fully human, and fully humane, in these extraordinary circumstances of knowing precisely when a loved one will die. How do we prepare for being angels of death? How do we cope with everything that only becomes clear in hindsight? How do we evolve to hold two deeply profound and yet duelling truths together in our hearts? For those of us watching a loved one suffer with irreversible disease, medical assistance in dying is merciful and necessary. It is also incomprehensible. The latter does not preclude the former.
In many ways, the timeline of humanity is all about making the incomprehensible comprehendible. There is no roadmap yet for MAiD caregivers. We have rituals and rites and eons of human experience to guide us along the path to that unknown point in time when life ends. But when that point is known? It changes everything, in ways we are still learning to grasp. MAiD caregivers navigate every last thing blind. I want our stories to change that. This is mine. I’m telling it to make sense of the incomprehensible. For myself. For others. For us all.
[MAiD from Scratch: Caregiving Stories from a New Frontier is a series that charts new territory in caring for those with terminal illness.]
*In Canada, MAiD, or Medical Assistance in Dying, is a process that allows someone who is found eligible under strict criteria governed by the country’s Criminal Code to be able to receive assistance from a medical practitioner in ending their life.
