As the first anniversary of my grandmother’s passing approaches, our family is experiencing an unexpected sense of peace.
We are at peace because we aren’t navigating her care during a pandemic. A year ago, we weren’t forced to social distance because her nursing home banned visits. We didn’t worry if her facility is taking all the necessary precautions. And we weren’t faced with the decision to take her out of her memory care facility.
Our heart is heavy though for the more than 40 million Americans who, as family caregivers, are struggling with a whole new set of worries and challenges because of COVID-19.
By training, I’m an epidemiologist. Understanding risks, working to reduce suffering and ultimately eradicating disease is my calling. My grandmother understood my job was to keep people healthy all over the world, and it’s through this professional lens I witnessed her initial symptoms and progression with Alzheimer’s. Then I switched gears to support my parents struggle to care for her at home and ultimately at a distance when she transitioned into a facility.
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In 2018, Hurricane Florence forced our family into crisis decision making mode. As the storm barreled toward the North Carolina coast, my grandmother’s facility called to encourage my mom to take her before we evacuated. If we didn’t, they were going to place memory care residents across the state.
For the first time, our caregiver stress was compounded with the stress of a disaster. Every option would likely increase her confusion and agitation. In the end, we decided to take her with us. This experience illustrated how much our systems aren’t designed to support caregivers during disasters—or a pandemic.
As an epidemiologist, I understand spread of the novel coronavirus and the steps for containment. I am also more acutely aware of what it is doing to family caregivers.
As the executive director of the Rosalynn Carter Institute for Caregiving (RCI), my experience in public health shines a unique light on former First Lady Carter’s commitment to supporting unpaid family caregivers. Serving the millions of family and professional caregivers who are dealing with the stresses of taking care of another person’s well-being all while trying to maintain their own health is our mission. This mission is now more critical.
Every day, these loving, generous people serve as caregivers and navigate in isolation without resources, support or an epidemiological approach. Unpaid family caregivers—like my parents—are hidden in plain sight. When crisis strikes, their vulnerabilities become even more acute.
While our public health system doesn’t consider the role of the family caregiver in its crisis planning, it is clear it would be even more crushed without their critical support. Unpaid family caregivers are the backbone of the health care system in the United States, providing as much as 90 percent of all home health care for no pay and at personal risk.
COVID-19 is also burdening family caregivers with a whole different magnitude of stress and anxiety from school closures and threatened employment to reduced access to external support. This public health crisis is also creating first-time caregivers as people come home from the hospital or rehab earlier than expected to free-up beds or are now supporting people recovering from the virus.
For our part, we are increasing outreach. RCI recently joined other national caregiving organizations to raise awareness to highlight one simple truth. This pandemic has exposed, what we already knew: our society is not prepared to care for caregivers.
My mom and I talk often about how we would have managed caregiving during this pandemic, living in fear of not cleaning a surface properly or forgetting to wash grandma’s hands or ours. Would we have allowed home health workers into the house? After all, they provide respite for so many, and do essential medical tasks, not to mention they help reduce isolation. But, is the risk to the household, or the risk to the worker, worth it?
Understanding the critical and irreplaceable role family caregivers of all ages play—that they too are on the front-line of care and need our support—will be key to effectively navigating this pandemic and beyond. We must urge our leaders across government and business to recognize the importance of providing appropriate support for caregivers.
Mrs. Carter often reminds me, there are four types of people in this world:
- Those who have been caregivers,
- Those who are currently caregivers,
- Those who will be caregivers, and
- Those who will need a caregiver.
As an epidemiologist I know that we have the capacity to outsmart this virus, but I also know that without effective support for those often-invisible caregivers, it will be much harder for our country to defeat this pandemic.
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