"It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us…” Charles Dickens – A Tale of Two Cities
The COVID-19 threat has profoundly disrupted the way we live. Daily life is being reinvented one family at a time. We’ve lost our freedom of movement, but what we’ve gained is more important: suddenly, care for each other is the central focus of human life worldwide.
Today, family caregivers, because they have experience with caring at home in protective isolation, have important lessons that are relevant for everyone. Here are four we think are especially important.
Family members are essential partners in care.
This virus will push most medical systems and people to the brink and beyond, including the brave and tireless medical workers. We owe our deepest gratitude and respect to the doctors, nurses, medical professionals and emergency services personnel who are tirelessly leveraging their expertise and care on the frontlines of this experience.
At the same time, we must re-examine our usage of the term ‘frontline’ because that line is shifting. As cases of coronavirus in long term care facilities surge, many families, if they can, are making the decision to keep or bring relatives out of those facilities to the comparative safety of home.
So this isn’t just a medical crisis; it’s a public, social, economic, and family-inclusive emergency that also affects the 40 million family caregivers whose billions of hours of unpaid, and often unnoticed, care was equivalent to an estimated $470 billion to the American economy in 2013.
We know from the experiences of China and Italy that the Coronavirus can and will overwhelm health care systems in North America and the UK, especially in regions of high population density. Therefore, family caregivers are critical partners in meeting home care and hospital staffing crises.
As Dr. Daniela J. Lamas, a critical care doctor, emphasizes in a recent New York Times opinion piece,:“Talking with one of the nurse practitioners in our hospital’s new Covid-19 I.C.U. one recent night, I asked what worried her most. ‘Patients dying alone,’ she replied quickly.”
In Canada, the Twitter hashtag #NotJustaVisitor has emerged as a clarion call for hospitals to formalize the bedside role of family members. Designated family caregivers can be screened and supported in the same manner as medical professionals. Of course, bedside support is provided by family members to hospitalized loved ones at the best of times. This is the worst of times, and experienced caregivers represent a human resource that is ready, able and motivated to serve.
But just like health and care workers, that army needs unprecedented forms of training, discipline and protection for the coronavirus battlefield. NextStep, a mobile training application startup, has recognized this need and launched a free coronavirus training certificate for community health nurses, home care workers and family caregivers. This is the new front line.
Care isn’t only a set of actions. Rather, it’s a set of intersecting lines of deep listening, intuition and consolation that cuts across all facets of our lives, rendering former distinctions of who gives and receives care as antiquated and inaccurate. The need for care is omnipresent, and has been all along. This is a truth that we forget at our peril.
Physical distancing and social connectedness require ongoing imagination and intention.
Distancing and connection should not be seen as opposites, but as complements to our physical and social health needs. The now famous “tipping point graph” that shows why social distancing is so important to slowing the spread of the virus has become part of our global lexicon. The graph’s inescapable truth is that social experiences matter. The necessity of “flattening the curve” depends on collective and coordinated social action.
But collective social action isn’t needed only in the midst of crisis. Care for the chronically ill, the elderly, and people with disabilities deserves the same intensity of collective awareness and action before, during and afterwards, even though these experiences are often overlooked because they exist on the margins.
The good news is that our valuing of care and social connectedness is beginning to grow, almost keeping pace with the virus itself as technology has become our new ‘town hall.’ Virtual dinner parties with friends, fitness classes, work meetings and all sorts of online entertainment have become our individual and collective lifeline.
In Canada for example, a movement called ‘Caremongering’ has emerged in response to online scaremongering about Covid-19. Community-based Facebook groups connect neighbors who have quarantine-related needs with those who can offer help.
But there is something more elemental at play in our physically isolated daily lives: we are noticing each other more. Almost overnight, our default operating system has morphed from apart/together to together/apart.
In our consumer-driven, always-on lives, we are being asked - or even required - to make friends with solitude and abandon our thirst for self-serving choice-making. Disconnected from public spaces of work and entertainment, we are in the process of re-discovering the intimate spaces of life in ways we may never have imagined.
Community matters because our individual wellbeing is inter-connected with the wellbeing of others.
This crisis is a reminder that our understanding of vulnerability needs to be democratized. In the midst of any health crisis, we usually seek to assess our individual and family risks by scanning for clues as to how much (or little) we should care, based on who may be more at risk than others as evidenced in percentages and probabilities.
In the search for who may be most at risk, we can’t help but be reminded that some of our family members, friends and colleagues have underlying health conditions. Chronic illness, disability, and compromised immune systems may have not been noticed or appreciated before, but now they can’t be denied or overlooked. In the UK, 15 million people have long-term health conditions or suffer from chronic disease. In Canada and the USA, 4.8 million and 133 million people respectively are impacted by chronic disease.
In some ways, the coronavirus crisis feels especially dire because it doesn’t allow us to see ourselves as removed from risk, even if we don’t have any underlying health issues. But in reality there is no they. There is no other. The they is blurring into you and me and our respective families and communities. The other may, in fact, be us since we can no longer ignore our shared vulnerabilities. The crisis is an invitation to recognize that all of us are vulnerable.
Caring for others is transformative.
Especially over time, care requires a greater tolerance for living with and alongside people, conditions and illnesses that do not bend to our will or desire. So we need to be cautious of those who proclaim that this crisis is simply a temporary shift in the way that life is ‘normally’ lived.
Care isn’t simply a series of acts to be marshaled in a public health emergency; it’s a way of being with others and a way of thinking about our interconnectedness that is transformative. So statements such as ‘When this is over’ and ‘When this is done’ should be greeted with caution and suspicion. What is happening is not something we should think and talk about as ‘ending’ because that would reduce what is happening to a medical crisis alone.
Clearly, it is a medical crisis, but something else is also going on: caring for each other has suddenly emerged as the apex of our value systems. In some senses and regions, neighborhoods have never been stronger. Surviving this pandemic together has emerged as our contemporary form of barn-raising.
So much of what mattered before COVID-19 is suddenly less meaningful. None of us will be quite the same again, nor should we expect to be. But it’s clear that we can find meaning in the worst of times as well as the best, especially when the meanings we are re-discovering are inextricably linked to care. And that’s something that should inspire us all.