Beyond the Six String Nation #12: Mum's last gift

Valerie Taylor: June 19, 1938 – August 26, 2023

My mother Val with Voyageur in 2006

Val Taylor’s husband Don was not supposed to die of non-Hodgkins lymphoma at the age of 66. Not only was that particular cancer commonly beaten, he came from a reasonably long-lived family. His mother, Cassie – losing some faculties but still getting around and telling stories and drinking cocktails – died at 94 and his brother, Cal – living alone almost to the end, full head of wavy hair, visiting France to receive the Legion of Honour in his 90s, regularly connecting with his dwindling cohort of veteran friends and playing with the flight simulator on his home computer – died just shy of 100. Rather, it was a cascade of misfortunes during treatment that ultimately took Dad from his wife, my sister Annalisa, and me.

By the same token, Valerie Taylor was probably not expecting to ripen to the age of 85. Apart from her uncle Dick, she was not from an especially long-lived family. Her own mother, Elsie, died at the age of 70 in 1985 and her father, Jack, in 1972 at the age of 60 from the same thing that would eventually take her: pancreatic cancer.

Mum was only 62 when Dad died and that was a shock for all the obvious reasons as well as the baffling inversion of the anticipated order of things.

But the older she got, the more she leaned into the pleasures and opportunities of longevity. Her world didn’t shrink around widowhood or advancing age – it got bigger: continuing education, continued involvement in the local NDP, volunteering with Holland-Bloorview Centre and the “Grannies” group of the Stephen Lewis Foundation, grandchildren – her own biological ones, Callum and Anika, and Pari and Yaya’s twins, Benjamin and Xavier, to whom she’d served as surrogate Grandma; travels to Europe with friends and with family, multiple drives across Canada to give awestruck visitors a genuine sense of the scope and scale of it, outings to restaurants and museums and movies, valiant self-training to master online banking and iPhones, Siri, Zoom meetings, and Netflix, practicing language skills on video calls with students in India, assisting refugees settling in Toronto, trips on the calendar for the UK and Germany in the fall. Those are just the things I know about. Others reading this may fill me in on things I’ve overlooked or never even knew.

At the beginning of June, Mum checked in online for a flight to Victoria BC and flashed the boarding pass on her iPhone at the gate – I’m not saying that wasn’t an effort but she did manage it without tech support – and once again she was travelling solo. She spent a couple of weeks with Annalisa and then took the ferry to Vancouver to visit friends Karl and Elizabeth. A week after she returned home, at the beginning of July, Mum and I arranged to complete some financial planning at her neighbourhood bank. Getting there was a little slower than usual as she’d developed some plantar fasciitis in one (and possibly both) of her feet – presumably from all her recent trundling around. She was wearing insoles and rolling her foot on one of those nubby rubber rollers, but ultimately it kept her off her feet for a few days, which made her miserable. After all, she had sandwiches to make for a hunger program, a friend to go grocery shopping for, a night out planned with friends to see the Barbie movie…. In that confined state she developed a pain on one side of the upper abdomen and some shortness of breath, which Dr. Google thought might be pleurisy or pneumonia. The hospital found no evidence of either and sent her home but a few days later her own doctor diagnosed a lung infection and gave her a short course of antibiotics. They had no effect so we took her back to the hospital where more thorough tests were conducted. The emergency room doctor, Nicole, was the first to report the preliminary findings. “I have some difficult news to deliver”, she said. “I’m a big girl”, said Mum. By the end of that very long day we had confirmation of the diagnosis from the oncologist, Dr. Robson, and mum was in a bed on the third floor.

From the get-go she had eschewed any “heroic measures” to deal with what was an exceedingly poor prognosis. She asked both the oncologist and the palliative doctors assigned to her about Medical Assistance in Dying (MAiD) while I was in the room and we were advised that it was certainly available to her and they would provide the necessary forms when she decided to pull the trigger on that option, so to speak. But her decline in the following days would prove so steep that we would miss the window for consent on MAiD and we’d move her home to be among family and the augmented comforts of home. She and we were all prepared to let nature take its course.

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Dad submitted to the treatments that should have cured him. They made him feel depressed and humiliated and he withdrew into his chair in the living room, spitting into a cup to relieve the discomfort of mouth sores from the chemo and basically not talking to anyone. I don’t remember what it was that put him in a hospital room some days after that but he was miserable there too. He’d had pneumonia a couple of times before in his life, which made him susceptible to reinfection and – sure enough – he got pneumonia in his immuno-compromised state. At that point they suspended cancer treatment in order to pursue an antibiotic course against the pneumonia.

We could tell my father was afraid. He wasn’t sleeping. I’ve wondered if maybe he was afraid to go to sleep lest he not wake up. And that just made everything worse. He was resisting himself into exhaustion when he needed his strength the most. At the hospital, he couldn’t really talk due to the mouth sores but he’d gesture frantically for pad and pencil and scrawl some indecipherable strings of near words. The panic and frustration were palpable.

Now, the problem with an antibiotic course in that setting is that it makes one vulnerable to an infection of clostridioides difficile (aka. c. diff) – a bacteria that frequently circulates in hospitals. And sure enough….

Soon after, he was moved into an intensive care unit, where the real transformation from hearty lumberjack-looking guy into sallow husk bleeding wires and tubes was made complete. Even within the ICU he was isolated in a kind of hermetic bubble. To visit we went through a hygienic ritual complete with sterile robes, booties and gloves. Annalisa, living in Squamish BC and pregnant with Callum, made hasty travel plans.

The day after Thanksgiving, 1997, Annalisa was flying in from Vancouver. Mum had spent an exhausting morning by Dad’s side. I arrived a few hours later and suggested she take a break. She retired to a tiny private break room and attempted a few bites of a turkey sandwich I’d made. I went into the ICU. It’s hard to imagine how anyone sustains in there without medical support. You’re in a virtual fishbowl dressed in a sort of junior hazmat suit, looking out at all the staff in their scrubs and masks buzzing around. In this strange and alienating environment, I attempted a one-sided conversation with my father – that barely recognizable specimen hooked up to all the machines (presumably including one that went “ping”: our Python-loving family would have appreciated that). At one point I said, “You know, Dad – if this is too painful for you to hold on, if you need to let go, that’s OK. I think we’re going to be OK so you should do what you need to do.” I waited half a minute amid the whirring and hissing of the ventilators and blood circulators and all the beeps and blinking lights. Looking around, I said, “Funny, I don’t even know what most of these machines even do”. But there was at least one that I knew exactly what it did. Clearly on the display to my right, just above eye level, was a regular oscillation marking dad’s heartbeat. And at that very moment, I watched it speed up to a tremendous rate of closely spaced vertical waves and then it went completely horizontal, still. I was confused because all the other machines chugged right along – Dad’s chest rising and falling in time with the ventilator. Wanting someone to explain this dissonance, I looked up, thinking I’d flag down a nurse somewhere beyond the edge of the bubble. There was no need. 5 or 6 nurses and doctors were racing through a decontamination sequence, throwing on their own hazmat suits and bursting the perimeter of our medically-enhanced sanctum. I was asked to leave so they could make their best rescue efforts. I zombie-walked to Mum in the waiting room and told her I thought it was over. A doctor came in moments later to confirm it. Mum was naturally devastated and I just went on autopilot: how do I make this better for her? It was then my grim task to get to the airport to meet Annalisa. All I needed to do when she came through the arrivals door was shake my head and she just crumpled into my arms. Callum, not quite 4 months along in her belly, would never meet the grandfather who was so excited to meet him.

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Dr. Robson warned that palliative care at home was harder than anyone imagines and that Annalisa, who would come to live with Mum and do the day-to-day work of caring for her would discover there were things she couldn’t do and things she definitely shouldn’t do. And yes, it was a steep learning curve, and no “routine” lasted more than a couple of days before some new set of supplies or piece of equipment was needed to make sure Mum was comfortable; but Annalisa totally rose to the occasion, joined a week later by Mum’s sister Marya – along with uncle Chris and cousin Hannah – all living there together. Once I’d cleared the decks at work I was there every day too and together we managed and even enjoyed our time together.

I continued to schedule visitors for Mum at home just as I’d done for her time at the hospital. She was tiring a little faster and her recall of where she was in a conversation or the word for a certain thing were slipping a bit more often but she was otherwise game to come out of bed and sit with people in the living room. And then it was just the bed. And then she was just sleeping or would acknowledge conversations with a few sounds while her eyes remained closed. Nurse Steve and the regular PSWs who came in to check on her and wash and change her and administer medicines all remarked on how startlingly rapid was the decay in her condition. By the time we had the MAiD forms and her neighbour Rosemary witnessed her scratch something by way of signature, it was too late. There was no way the doctor assessing her request could interpret that scratch as “willing and informed” consent. Soon, there would be no communication whatsoever.

MAiD is there as an expedited path to spare people with devastating, degenerative, irremediable illnesses from having to submit to a long, painful, demoralizing hollowing out of themselves before the eyes of their loved ones – and thank goodness it is was legalized in Canada in 2016 – but that wasn’t what Mum was facing. Rather, she’d gone from a diagnosis to her last breath already in expedited fashion – exactly four weeks – at home, surrounded by her very loving family and a parade of friends, family, colleagues and neighbours  that would continue until almost the end. All the assistance she needed.

On August 26th, Annalisa, Marya and I were all with her by her bed as her breathing grew more laboured and took on a different tone. At about 2:42pm, it stopped.

Although the duration of her journey through illness to death was almost exactly the same as my father’s, it was in every other way a completely different experience. Where dad’s was frantic and fearful, mum’s was an evenly paced and peaceful decline faced with open-eyed acceptance; where his was isolated in a literal bubble surrounded by a wall of medical technology, hers was at home with her music, her quilts and the smell of Sarah cooking French onion soup wafting in from the kitchen; and most importantly, his final moment was a kind of desperate crossing witnessed only by his confused and helpless son as a machine made a mockery of breathing, while hers was a moment of evanescence and a very final human breath in the room where those who loved her most held theirs for an instant and then, inevitably, resumed. In this moment she had presented us with the alternative to the tragic loss of Dad and quietly closed that bracket in her marriage and parenthood. It was one of her greatest gifts to us, her family. Thank you, Mum. Love you.

“And though she be but little, she is fierce.”
~ William Shakespeare, A Midsummer Night’s Dream, III, ii

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The loss of Dad was not all panic and chaos. Read my earlier post about Don Taylor:

here.