Against a culture that too often reduces compassion to a mushy pulp of tear-sodden Kleenex, Bonnie Tompkins knows it can require the implacable honesty of death itself.
From her upbringing as a New Brunswick farm girl to the five years she spent as a caregiver to the terminally ill love of her life, Tompkins has taken into her soul the understanding that both living and dying well demand the maximal directness that a given moment can humanely bear. The alternative, she insists, turns true compassion into a mask for evasion, which breeds only confusion, which gives rise to frustration, which foments anxiety that tears apart the heart.
She lives the understanding daily in her work as the Compassionate Care Coordinator for McNally House Hospice in Grimsby, Ontario, and as Community Health Coordinator for Carpenter Hospice in Burlington. It was a source of creative energy for her during a weeklong marathon of promotional events for the Compassionate City Charter in early October. Above all, she says, it was foundational to her in providing end-of-life care for her partner Ian Clarke, who died of colorectal cancer on May 10, 2014.
“I was a caregiver that saw no support,” Tompkins says bluntly during an interview in a Reflection Room set up at the Burlington Art Gallery. “No one ever asked me how I was doing in the doctor meetings. It was tiring. It was long. It was dark. I don’t want other people to be subjected to that. So, the fight in me is the fight to spare people from going through what I went through.”
The Reflection Room itself is arranged as a kind of spatial pushback against what Tompkins went through. Mirroring other events around Burlington’s proclamation of the Compassionate City Charter, it invites those who enter to go beyond thinking about, or even meditating on death, and actually interact with it in a sense. A message board on one wall, for example, lets the living leave notes for loved ones who’ve died. The purpose goes far beyond impromptu Hallmark eulogizing. Writing to the dead is a gesture of truth telling about mortality, including our own.
“I grew up on a farm,” Tompkins says, “so I understand there’s a chain. There’s birth and there’s death. You treat people or the things around you as best you can, but you also understand, just by the way you live, that there’s a time. I think that in cities, it’s much more removed. You don’t deal with it directly, all the time. You forget how natural death is. You forget it’s coming from the moment you’re born.”
Such large-scale forgetting, Tompkins believes, is why even seasoned practitioners in the public health care system frequently seem nervous, awkward, even evasive when the time comes to talk about dying and death. The effect on patients and their caregivers can be a monumental frustration of the kind Tompkins felt when Ian was first diagnosed in August, 2009.
“Doctors don’t give you the full picture,” she says. “They give you snippets at a time that they think you can handle. So we were left not knowing what (the diagnosis) entailed. But we wanted the truth. We wanted to know.”
Feeling very much left to their own devices, they turned for comfort, and indeed sustaining sanity, to two factors in their relationship and in their characters. One was a bedrock frankness with each other that made an imperative of full honesty about needs, wants and what was coming. The other was what to that point had been an anomaly between them. Ian was in his late 50s when he began earnestly courting Tompkins. She was in her mid-20s. For two years, primarily because of the age difference, she welcomed his friendship but ducked commitment. Ian, the manager of an Audi dealership had the born-salesman’s conviction that “no” is just a word waiting for a reason to become “yes.”
“He courted and he pitched and pitched and pitched about why I should date him. I tried to date other people. It just wasn’t working. We would take a break from each other and we would always come back together.
“Finally, I talked to my parents who said, in their classic farmer fashion, ‘you two need to s—t or get off the pot. You need to either date or stop being friends because you’ll never fall in love if you keep going the way you are.’”
Eight months after admitting that they were, in fact, in love and beginning a life together, Ian got the terminal diagnosis. It would be absurd to talk of cushioning such a blow, of course, but the very difference in their ages became a way to stay within honest bounds despite the shock. Actuarial tables being as they are, the partners recognized from the beginning that Ian would in all probability die before Bonnie.
“We had always had conversations even before he got sick about not him being around forever,” Tompkins says. “I knew that some day he was going to pass ahead of me. He wasn’t going to be my forever after. I think that really helped us.
“It still sucked, and it was still exhausting. We went through everything everyone else did. But we talked honestly right from the start. We talked immensely. We knew. Why would we pretend with each other that we didn’t?”
A primary practical benefit was to allow them to recognize the preciousness of the time left to them. If there wasn’t time to waste taking the long way home in every conversation, there was still time to make the most of each moment together. It also gave them full freedom to negotiate the incessant obstacles and anxieties of living, caring, loving, dying.
Anxiety was a constant personal burden for Tompkins in addition to the inchoate anger both she and Ian felt at the injustice of a life just coming together being cut so short by death. Completing a degree in public health at Brock University at the time, she was acutely aware of signs and symptoms of the disease progressing. She dreaded coming home to find his body. On the one occasion when, at his urging, she detoured on the way home to go out for dinner with friends, he suffered a heart attack and was rushed to hospital.
The crisis jolted Tompkins into deeper awareness of gaps and attitudes within the health care system that obstruct adequate, much less desirable, end of life care. When she arrived at the hospital in Hamilton where Ian had been taken, she discovered he’d been given no treatment because staff had no access to his patient records so couldn’t determine the specifics of the chemotherapy regime he’d been on.
“He had a heart attack, and was given an aspirin,” Tompkins says. “They wouldn’t do anything more because they had no medical history.”
Paradoxically – some might say Providentially – Ian was part of an experimental electronic medical records program that gave Tompkins full access to every detail of his care. She downloaded it to her phone at the hospital, and gave the information to medical staff. Quickly thereafter, Ian was transferred to another hospital, where he got the attention he needed.
“But it was more than just them not having the records. We could hear them discussing whether or not he should even receive treatment. We could hear (staff) saying things like ‘well, he’s an old man who’s been on chemo for three and a half years.’ It was completely inappropriate for them to be saying that. And to be saying it where we could hear them….”
Against the absence of information and the lack of compassion from some staff, Ian survived, recovered, and returned home. But the flaws of the medical system were painful markers of the fragility of his condition, and the incessant approach of the end.
“It’s like there’s always a cloud in the background, this gray cloud. You know what it is, and it creeps forward and gets closer and closer and closer. You know it’s there, and you know what’s coming.
“Don’t get me wrong. There were times when I didn’t want to tell Ian what I was suffering on the inside. There were times when he didn’t want to complain to me because he knew I was exhausted and running ragged just to manage the house and him and everything else.
“But we always talked. We always did talk no matter how scared we were to tell each other what we were truly thinking. That helped us through some very dark times.”
Photographs by Peter Stockland
A darkest of dark times came with Ian’s days being counted in weeks when Tompkins felt she could no longer bear the pressures of a heavy course load at school and the insatiable demands of caregiving. She announced she was quitting her program.
“The first thing out of his mouth was ‘absolutely not.’ He was not a demanding man at all, but that day he was absolute. I told him I was at my breaking point. I said it was unrealistic for me to keep going to school during his last few weeks of life. He was ‘absolutely not.’”
Rock and hard place both recognized the only option was to negotiate. It was not a barter anyone would want to be part of. Yet the foundation of forthrightness got them through it.
“I offered to drop my course load to four credits from six. But I said ‘here’s the deal: you have to eat, you have to drink, and you have to stay alive until I’m finished my exams. That’s the only way it’s going to work. I’m giving you what you want, but you’ve got to do whatever it takes to stay alive.’”
“Ian sat there and said: ‘Okay. I’ll do whatever it takes to stay alive. When you’re done your last exam, I can stop eating and drinking. Deal?’ We shook on it. That’s what we did.”
The deal did not, however, preclude Ian from preparing for his own death by going to Switzerland to receive medical aid in dying prior to its legalization in Canada. Tompkins came down for breakfast one morning to be presented with a neat folder of documents and financial arrangements for the trans-Atlantic flight and Ian’s cremation. His main concern was to avoid overburdening her in his last days, or “scarring” her by dying at home.
“I said ‘thanks for dropping that bombshell over coffee.’ I told him I didn’t think it was the route to go. And then I very quickly said: ‘Listen. I’ll go no matter what. I’ll be damned if you’ll die alone.’”
In the end, before it came time to “pull out the file,” Ian had, through Tompkins’ gentle guidance, become acquainted with hospice care in Canada. Ultimately, he agreed to enter a hospice as the end neared. An incentive was that the couple’s dog, Honey, could come to visit every day.
Tompkins wrote her last exam on a Saturday. Ian left home for the hospice two days later.
“So Monday morning, I went up and woke him up and I said ‘okay, I’ve packed your bag. It’s time to go.’ For a few moments, because he was cognitively changing, he said, ‘Where am I going?’ That was the hardest thing: to tell him where he was going. I said he was going to the hospice. His facial expression was ‘oh, right, I’m dying.’ He walked down the stairs and walked out with the dog, got in the car, and off we went. He stuck to his end of the bargain. I stuck to mine.”
After six days of “being with him as two people loving each other in a relationship” – plus a birthday celebration of an ice cream cake and champagne shared with friends of more than 30 years – Ian died at age 66. Tompkins is resolute that the hospice experience re-affirmed them as beloved partners. It freed them both, in the hours before death, of the burden of bearing burdens.
“It’s hard for people who haven’t lived through it to understand those burdens. The patient has their role and they don’t want to be a burden to their loved ones. Then the caregiver has their role, and they don’t want to burden their loved ones. That creates this massive disconnect.
“You often hear caregivers say ‘I’m the caregiver so I’ve stopped being the wife or the partner.’ I know exactly what they mean. I did all the caring at home. We never saw a palliative care doctor because the wait list for palliative care was four months, and Ian died before he could see anyone.
“But in the hospice, it was the first time I could just be his partner and not have to be helping him to get to the bathroom, helping him shower, all those things. Those last six days let us be us, completely us, again.
It became evident, as she spoke these words in the Reflection Room at the Burlington Art Gallery, that Tompkins was running on last-dregs adrenalin from the week’s activities promoting the Compassionate Cities Charter. She confessed to a “Type A personality times three” frustration that the message hadn’t reached enough ears, that not enough had been done to effectively promote palliative care, the hospice movement, the need to understand compassion as open and frank communication about the end of life. Then she paused and looked across the table and asked me, before I left, if I would write a note to a deceased loved one on the message board behind me. I said I would, and was reminded once again of the link between honesty and mortality, including my own.
“I’m all about planting seeds,” Tompkins says. “That’s why I’m not afraid to talk in front of a crowd about these things. Sometimes I feel I’m just this little person, but I will get up and talk, off the cuff, because it’s planting that seed. If someone comes up to me afterward and wants to continue the conversation, I’m like ‘Okay. Awesome. What do you think you can do, and how can I help you make that happen?’ That is how change happens, one molecule at a time.”
We are all, of course, molecules moved, altered, ultimately reduced, by many things through our lives. For the fullness of our humanity, though, none should ever be more powerful than the kind of implacably honest compassion Bonnie Tompkins embodies.