When the Caregivers Need Care

As we wade into year two of this marathon, there’s one group on which we all rely, yet who in return receive little to none of the care that they so expertly give. Here are some thoughts around what we can do for the caregivers.

Deb, on our first-ever trip as a couple… into the jaws of the California fires © Anthony Fieldman 2017

Before the pandemic began, I already had deep admiration and respect for my wife, by every possible metric. Not only has she been an exceptional mother, always showing up for the children she raised on her own for a decade before I arrived — after she lost her husband when they were toddlers. Throughout, she has also remained as competent and dedicated an executive as I’ve ever met, shouldering increasing amounts of responsibility in the healthcare industry, as more and more of her employers’ sprawling portfolios came under her capable leadership.

She is a master juggler.

Her hospital, home to 1,400 geriatric patients and residents, is one of the largest such facilities in Canada — and perhaps North America. In the age of COVID-19, her work is not only about delivering ensuring their health and incubating innovative programs to enhance quality of life, it is also aimed squarely at the pandemic’s most vulnerable demographic, comprising 88.4% of all Canadian COVID deaths, nation-wide.

Source: https://health-infobase.canada.ca/covid-19/epidemiological-summary-covid-19-cases.html

Somehow, in this past year of increasing demands on her — with our kids stuck at home 24/7, and with me there only part-time, as I have continued to father our other child in New York; without a shred of personal time off, as mandated by the Canadian government, given her role; and with stress levels at the hospital itself continuing to bubble, as physically and emotionally exhausted professionals reach their natural limit — my admiration for Deb’s capacity has only grown.

What has worried me, however, as her husband, is her emotional state, which finally began to manifest clear signs of stress, just a month or so ago. Somehow, until this happened, the obvious had escaped me: that caregivers, too, need care. In an ironic twist, while this particular field is full of people with an innate desire to help people, what too many of them ignore in this noble cause — as Deb and I discuss, regularly — is their own health. It was certainly true of my doctor grandfather, it is equally true in our home; and while I admire Deb deeply for her commitment to others, I equally know that an empty well cannot quench a thirst.

On any given day, healthcare is a tough field. To be surrounded by people in varying levels of need, day in and day out, is to live in a world of perpetual distress. I know Deb doesn’t see it that way; she just sees wonderful people nearing the end of life whose dignity and comfort she can help maintain. Clearly, some people are born with the psychological fortitude — the constitution — for this. Deb has it. I certainly don’t. But humans are still human, and need breaks to retreat and repair ourselves — to replenish our wells, so to speak — so that we can dive back in from a place of renewed strength.

It is called “self-care”.

So, who cares for the caregivers?

A Pervasive Problem

In the United States, 400 doctors die by suicide, each year. As the New York Times reported last month, the issue of their present burnout came to the public’s attention last Spring, when Dr. Lorna Breen, “who had been sick with Covid but working remotely, was later admitted to a psychiatric ward for 10 days. Fearing the professional repercussions of her mental treatment, she took her own life.”

“She was overwhelmed with the volume of death and dying, and she could not keep up,” according to her brother-in-law.

The American College of Emergency Physicians found that 87% of practitioners felt more stressed since the pandemic began, and that 72% were facing burnout. But. Because of longstanding stigma in the profession with regard to mental health, 45% of them weren’t willing to seek help, or treatment.

Nurse in a Moscow Hospital. Photo by Vladimir Fedotov on Unsplash

A pressure cooker without a steam valve eventually explodes.

Deb’s not a doctor. She’s a healthcare executive. Regardless, she faces emergencies, sickness and others’ panic every single day.

It’s not just the doctors.

Some 50 million Americans are unpaid caregivers, according to a recent Op-Ed piece in the New York Times by caregiver Kate Washington — a non-medical professional who has cared for her husband through six years of treatment and chronic illness stemming from a lymphoma diagnosis. That’s on top of the 130 million health care industry workers in the U.S. — still its largest employment sector, and the one growing at the greatest clip, as the boomers age.

So how these people collectively fare is — by a tiny leap of imagination — central to how we will fare as a society, given that eventually, nearly all of us require their services.

We need to care for the caregivers.

In the Op-Ed, Washington reflects, “Five years ago I stood in a tiny hospital room wondering how I was going to care for the man I loved most without succumbing to despair.” She didn’t train as — nor ask to become — a caregiver. Life handed her that role, as it does with most of us, such as when our parents age or someone in our lives suddenly falls ill. These 50 million “other” careviers need care too — perhaps even more than those who have chosen a path in that field, and are thus equipped differently.

Either way, the hundreds of millions of North American caregivers need care, whether it is self-administered, through a support network, at home, or all three.

A field of “caregivers’ caregivers” is emerging in recognition of how central these human resources are to the wellbeing of entire communities. One of these is the Center for Mind-Body Medicine, set up in 1991 to teach self-care to professionals. CopeColumbia is another, and is associated with a University hospital system. #FirstRespondersFirst is a third, set up by a mashup of Harvard’s T.H. Chan School of Public Health, behavioral change technology company Thrive Global, and the philanthropic arm of Creative Artists Agency (CAA).

From #firstrespondersfirst’s Instagram Page

In addition to teaching self-care, one of the pillars of these organizations is the cultivation of communities made up of fellow caregivers, who are given safe space and tools to connect with fellow professionals’ through stories and shared experiences, to destigmatize the idea that medical professionals, too, are human! The activities within these organizations put burned out lives back into a larger framework, with successful, palliative outcomes.

But these things, as wonderful as they are, are all “opt in”. Some frontline workers, like the 45% of care-avoiding doctors, still feel they must choose between their own families and their patients or professional duties, or protect what they view as at-risk reputations. And so, it really does fall to their “inner circles” — to family and close friends — to ensure that caregivers are not only receiving care, but are also prioritizing themselves, to some degree, the way they’d advise their own patients. We need to remind them that their health, too, matters; and that without it, they’re no good to anyone.

I recall when my brother — a physician — was dying, he refused to have surgery to remove tumors from his colon, when his cancer returned for a third time. He’d had enough, after decades battling oncological illness. Hitting a wall each time I tried to appeal to him, I changed tactics. I asked, “What would you tell one of your patients, if he presented to you with the same thing?” He squared his posture, looked at me quizzically, as though I were an idiot for asking, and said, “I’d tell him to get the damn thing cut out, of course.”

<sigh>

Caring for the Caregiver

At home, the need for Deb to receive at least a modicum of care herself is becoming palpable. Her stresses are understandably visible, and need an outlet. While I can’t live her life, there other things I can do, when I’m home, of which I am increasingly mindful, and participatory. One is purely pragmatic: share the long list of “must dos”, like household chores and child-rearing. Another is to tend to her emotional health, by supplying the ears, interest and patience to enquire and absorb what’s going on at work and/or specifically stressing her. A third, admittedly difficult thing, given how locked down Toronto remains, exacerbating the very thing causing her stress, is to find some outlets for it, in the form of small kindnesses. Flowers; gifts from my travels; special meals, ordered in; long walks in the woods, on weekends; and that damned Peloton bike she’s been craving for 3 years now and, in classic Deb-style, had repeated denied to herself, insisting that she “didn’t deserve it”. Well, it’s on the way, baby. Enjoy it! Essentially, whether the gesture is big or small, anything that helps mitigate the Groundhog Day repetition of her life, right now, within the fixed parameters allowed by a hyper-regulatory government, helps.

On occasion, something extra special is in order. Since our honeymoon — to Japan — was postponed due to the pandemic, I decided to turn our dining room into a Tokyo restaurant for her birthday last year, complete with a “view” of Mount Fuji, courtesy of a giant tapestry I bought for the occasion, adored with Hokusai’s famous woodcut. It was set across from where we sat beside one another (our favorite way to eat, when we’re out). There were special table settings and serving pieces; a menu I created and printed, complete with a name for our “restaurant”; floral arrangements; a reprint of a photo of us enjoying a Japanese meal on our first trip together, albeit now with our faces transformed via Photoshop into Kabuki actors; and of course, the meal itself, from a top chef in Toronto, and a giant bottle of sake to soften any still-sharp corners…

Resutoran Unmei No Hito—loosely translated, “Soulmate Restaurant” © Anthony Fieldman 2020
The evening menu © Anthony Fieldman 2020
A few hours of quasi-normalcy © Anthony Fieldman 2020

It was the only “night off” I could give her (I’d gotten the kids sleepovers), and only representative of a token “micro-trip” to Japan, but for a few hours, at least, life felt quasi-normal.

The point is, we are all capable of creative acts aimed toward those we love, if we are mindful of their stresses. It’s easy to get caught up in other things and forget about their suffering, because we aren’t living through what they are. I am often guilty of this, which is why the mindfulness part is so important. But the fact is, I can contribute materially to reducing Deb’s stresses, and while I’m describing what any decent husband should do for his wife — or anyone in any form of relationship — it is even more pronounced when your spouse works on the frontlines, no one more than the people tending to others’ health.

So, while a gesture may not last long or be consequential, per se, what is consequential for the caregivers — I think — is the knowledge that they are not alone; that they are supported by peers, friends and family; that life is still capable of delivering beautiful moments, however modest; that the investment in one’s own wellbeing is important to prioritize, too (a frequent discussion in our home); and that combined, these things can take the edge off of a tough situation over which only the government has some measure of control, the specific likes of which frankly no one alive has faced before. Least of all the families of those who have succumbed, or lost work, or broken down, in addition to the caregivers in our communities who have risked everything to keep us healthy and safe, including — too often — their own health and safety.

So, what can we do when our caregivers need care? We can show up for them, the way they show up for us, and treat them to some hard won, heartfelt gratitude.

And maybe, when the world is largely vaccinated, I can book that trip to Japan, where we can sit facing Mt. Fuji, and reminisce about Hokusai and that crazy Covid meal in our dining room.

Enjoying the best (Japanese) breakfast in the world, at Single Thread Farm, 2017

Architect | Photographer | Writer | Polyglot | Windmill Jouster | Nomade Civilisée.

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