Part of the Taking Care Special Report
America’s 66 million (pre-COVID-19) family caregivers — people caring for loved ones with complex, chronic and ongoing care needs — are thrust into their role with no training, no background and no support infrastructure. Preposterously, most feel like the only one on earth.
Why? Because caregiving is the modern-day mystique.
Betty Friedan’s classic 1963 book The Feminine Mystique revealed that many homemakers were suffering in silence, weighed down with responsibilities they were expected to love. It sparked a revolution of truth-telling and collective action. Today’s COVID-19 crisis might just spark the same revolution with caretaking.
The Caregiver Mystique
Like the feminine mystique, the caregiver mystique thrives in silence and shame. Family caregivers are socialized to think that caring for aging parents and sick loved ones is a family duty that comes naturally and is filled with love and an abundance of patience.
For families with loved ones who are vulnerable, the coronavirus threat is absolutely terrifying.
I know what it’s like to be a family caregiver. I was one for my mom for 28 years due to her Multiple Sclerosis. There were many challenging moments, but none harder than a winter weekend in 2016. Stem cell replacement therapy had been my mother’s Holy Grail for years and on a chilly Friday afternoon, she got a shot of stem cells directly into her spinal fluid. We could almost hear trumpets.
But at the end of the needle was a tiny droplet of strep infection, likely the result of a nurse or doctor who accidentally spit while chatting with us. It gave my mom bacterial meningitis. When she woke up that Saturday, her body was having convulsions and she was murmuring strange words like she was possessed. Her doctor said I needed to keep her alive for the next 48 hours until I could bring her to the hospital. I did and worked from her side in the hospital on Monday. On Tuesday, I went back to the office and completely downplayed the traumatic experience we’d been through.
My nightmare weekend, and the silence that followed, is a version of what so many family caregivers are experiencing right now.
What the Coronavirus Has Meant for Family Caregivers
For families with loved ones who are vulnerable, the coronavirus threat is absolutely terrifying. The family caregivers are responsible for preparing their loved ones with back-up meds and supplies, keeping them safe from the virus and, in the case of diagnosis, scrambling to make the right decisions to keep them alive.
At my caregiving concierge company, Wellthy — which grew out of my experience caring for my mom — we’re hearing stories of families navigating hospice decisions, pulling loved ones out of long-term care, and older adults with dementia who think the family is on an extended spring break. (Forgetfulness is bliss in a pandemic!)
But the pandemic is also leading family caregivers to admit that they can’t handle all of these responsibilities on their own.
Over the last several weeks, employees have had to “come out” to their employers as they juggle their work responsibilities with caregiving crises at home.
These families need support. They need solidarity. And they need structural transformation.
What Family Caregivers Need to Do
Caregiving is really tough. Family caregivers are squeezed, and the health care system expects them to figure it all out. Unlike becoming a parent, there are no step-by-step guides for the introduction into caregiving. Mostly, caregivers fall into their role suddenly. And every caregiving path is long, windy and different.
Caregivers must figure out how to navigate complicated insurance questions, administer medications, lift someone who weighs as much or more than they do, bathe correctly, buy the right equipment and supplies, watch for potentially dangerous symptoms like the development of a pressure wound, and, now, protect loved ones from a global devastating virus.
Sadly, neither the health care system nor our country’s leaders have acknowledged caregivers’ critical and quiet role behind closed doors, protecting loved ones, avoiding hospitalization and preventing death.
Yet family caregivers are critical in preventing the spread of the virus and improving the spiraling diagnosis and death rate.
How Things Could Be Improved
This all could be different, though.
Imagine a world where families had a local caregiving agency staffed with warm, informed and empathetic experts to help navigate, advocate and set up the right care for each family based on their unique needs.
Imagine that each state had a robust and well-funded Department of Aging, renamed Department of Caregiving, with a team of social workers supported by a robust software system that tracks and recommends, in real time, local and state resources, services and programs.
Imagine a society in which we prioritized preventative care in the form of proactive support programs like in-home aides, therapists, community groups and social activities to provide physical and emotional stimulation to all our citizens.
Imagine a world where the heartache that people experience over the weekend isn’t considered a shame to be swallowed on Monday, but a natural human need to be met and a set of skills to be nurtured.
In the time of a pandemic, especially, let’s recognize, celebrate and, most importantly, help our family caregivers.
Next Avenue Editors Also Recommend:
- Caregiving in America: The Strain, the Pain, the Emotional Drain
- What Do Family Caregivers Need? MIT Asks Them
- The Personal Sacrifices Family Caregivers Make for Their Loved Ones
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