Machado: The power of the broken-hearted can drive compassion, empathy and change

Negative experiences can help us understand the sadness of others and drive us to show up and make change so that no one else has to go through the same trauma, tragedy, loss and bad luck alone and without support.

When my father — my super smart, engineer, math whiz father — had dementia, my mom took on the role of his primary caregiver. I could say that I don’t know how she managed the round-the-clock care he needed, from making sure he didn’t turn the stove on, that his constant wandering didn’t find him outside of the house and lost and that he got to the bathroom on time, and cleaned up when he didn’t make it. But I do know how she managed it — with grit, tears and the dogged determination of someone who both needed to care for their life partner, and for whom there was no other choice.
She would sometimes leave him at my place when she had errands to run, and he’d spend the first few minutes staring at my kids. It felt as if there was so much he wanted to say, but he couldn’t get the words out in any way that made sense. On one of these visits, my dad — who, before dementia, could fix anything — noticed that the handle for the kitchen faucet had come off, and he became obsessed with putting it back on. I walked into the room to see his face, pained and terrified, as he tried to screw the handle (which he was holding upside down so that the hole for the screw was facing the ceiling) in again and again, only to have it fall off each time.
The fear and confusion in his wide eyes I will never forget, and when I finally convinced him to let go of the handle and give up, he walked away slowly, hunched over, while I dropped to my knees behind the counter so he couldn’t see me cry.
I remember thinking that if heartbreak had a feeling, that was surely it.

And it’s not like it was an unfamiliar feeling. Our little family had had its share of heartbreak — my brother had a bleeding disorder that, years earlier, meant that he got caught in the Tainted Blood Scandal , contracting both HIV and hepatitis C from a blood transfusion. We didn’t know it at the time, but there was more to come, as he would later develop an aggressive liver cancer, and me, a rare blood cancer. And I’d hate it when people would say things that they thought were encouraging: “Everything happens for a reason”; “Bad things build resilience”; “God wouldn’t give you anything you couldn’t handle” and the worst, “What doesn’t kill you makes you stronger.”

Building a national caregiving strategy

This week I had the honour of attending the Canadian Caregiving Summit , an event hosted by the Canadian Centre for Caregiving Excellence (CCCE) aimed at building the foundation for a national caregiving strategy. It was clear from the roughly 350 people in attendance (another 140 connected virtually) that taking care of those who care for others was a really big deal — in fact, a burning priority that needed attention. Right. Now. And over three days, leading thinkers in the caregiving space, from policymakers and advocacy group leaders to caregivers and patients, stood at podiums and gathered at tables to share their thoughts on the steps that needed to be taken to improve the lives of family and community caregivers, to ensure their work is valued and get them and their role recognized as a critical part of the healthcare team.

There was incredible courage and passion and bravery threaded through this pumped-up group. There was something else though — heartbreak.
A woman behind me in the lineup for the washroom described being overcome by a sense of grief listening to the daily challenges of another woman who was caring for her dying mother. She said she hadn’t thought of the hopelessness that she once felt caring for her disabled husband in years. Someone else stopped me in the lobby after I moderated a discussion on how caregiving is being improved across Canada to tell me about her son with complex needs who died just months ago, and the husband who left soon after, taking the bank account and the house with him. She said that her son had taken up her whole life until his death and she wondered out loud how it was that she was 57 without a cent in retirement savings. And then there was the young man who described himself as being in the “trenches” of giving care, looking after his older brother who had a life-limiting neurodegenerative disease, while attending university and working. He talked about not being able to go to parties or date because of the constant tugs on his time and energy.
There were other stories too. People who live in poverty because caring for a loved one leaves them unable to work, others suffering trauma after the death of a child whose care took over every aspect of their life, and still others, struggling with loneliness, depression and anxiety, all tired, stressed and mentally taxed from navigating a healthcare system that refuses to make room for them. Yet, they were hopeful for change.
It made for a compelling event with multiple layers. The atmosphere, though electric with ideas, energy and passion all aimed at making caregiving in Canada hospitable for those who do the caring, was also heavy at times, clouded by moments of wilful weakness and vulnerability, admissions that yes, caring is difficult and no, it’s not at all fun and man, life can be so hard. Yet, there we all were.

Facing hard things teaches us compassion and empathy

On the second day, Al Etmanski was on stage, part of a panel discussion on caregiver benefits. Etmanski, who, among other things, is a community organizer and led a successful campaign to establish the world’s first savings plan for people with disabilities, talked about the inequities of caregiving and why caregivers must be supported socially, but also financially. He mentioned the power of the broken-hearted. He said he preferred to work with people whose hearts were broken because they had “edges” from being bumped, dented and bent, edges that reflected light. When I followed up with him afterwards asking him to explain his thoughts further, he wrote that this light “ allowed them to see the world as it is, with its beauty and brokenness. To care for the world despite its horror, desecration and pain. To embrace our differences. And to meet each other as fellow human beings.”  Etmanski wasn’t talking about trauma, tragedy, loss and bad luck as rites of passage to resilience, or as things that happened “for a reason.” And he certainly wasn’t inferring that if a person can survive the very difficult role of caregiving intact and still alive, that that makes them stronger.

What he was talking about though, was the empathy and compassion for others that facing hard things in our lives teaches us. It can make us bitter and angry, too. But when a negative experience culminates in empathy and compassion, it helps us understand the sadness of others and drives us to show up and make change so that no one else has to go through the same trauma, tragedy, loss and bad luck alone and without support. It also makes it easier to motivate others to sign on to the fight, believe in the cause and raise their fists too, even if they themselves don’t share the same experience.

This conference was a perfect example of this — a powerful combination of caregivers, advocacy group leaders, policymakers, government representatives, healthcare organizations and others, coming together, some with broken hearts, some with hearts intact, all with sights set on one goal: a national caregiving strategy.
And as I made my way home, outside the conference centre waiting for a taxi, in the security line at the airport, eating dinner in a restaurant near my gate, I kept running into people from the conference who all said the same things: they felt energized, had more ideas, and most importantly, were hopeful for change. The challenge now is to keep the momentum going.
After all, how much more hearts need to be broken before we realize that it’s better for everyone if caregivers and care providers are valued for the work they do?
Originally published in Healthing. View the original article here.