Family caregivers are direct care workers. We are essential workers. We are unpaid home care workers doing the same job as hospital and nursing home staff, but without pay, labor protections or other benefits.
In an attempt to salvage doses of the COVID-19 vaccine, hospitals are currently being investigated by the Department of Health for vaccinating ineligible public workers. With the New York Times reporting that unused doses of the vaccine were discarded, I strongly urge the NYS Department of Health, Governor Andrew Cuomo and Mayor Bill de Blasio to add family caregivers to the groups of essential workers who are eligible to receive the COVID-19 vaccine immediately.
NYS employs just over 200,000 home care workers, who are currently eligible to receive the vaccination, but the 2.5 million family caregivers across the state have yet to be included for eligibility. While vaccinating home care workers makes good sense due to their exposure to multiple patients, 24 percent of family caregivers report caring for more than one person. I am one of these caregivers, over the years having cared for up to four older adults at one time.
Family caregivers are direct care workers. We are essential workers. We are unpaid home care workers doing the same job as hospital and nursing home staff, but without pay, labor protections or other benefits. If we aren’t protected, many of those we care for could end up in nursing homes, where 40 percent of COVID-19 deaths nationwide have occurred and where care is costly, placing an additional and intense burden on an already strained health care system. Protecting family caregivers, along with those they care for, is good public health.
Family caregivers have been under increased pressure since the beginning of the pandemic and live in fear of bringing the virus home with them and to the people they care for. Given the huge number of family caregivers in New York State and the 2.4 billion hours of care valued at $31.3 billion contributed to the state each year, it is time we are acknowledged for the work that we do. Ensuring vaccination for family caregivers would be but one way to safeguard the lives of those whose contributions to the economy and health care system are enormous. It is also a good insurance policy for the state, to ensure that nursing home admissions do not rise at this dangerous time.
Family caregivers are all too familiar with the terrifying feelings about what might happen to those we care for if we get terribly sick or die before they do. I have been caring for my mother for 25 years, since she had an aneurysm rupture in her brain when I was 17. Unable to care for herself or direct her own care, her life would crumble without the daily assistance my husband and I provide. From personal care to skilled nursing tasks and care management, we do it all.
Family caregivers are essential workers, especially when access to formal essential workers becomes limited, as it has during the pandemic. The feeling of needing to stay healthy and alive so another person doesn’t suffer is an unbearable weight. Every trip to the doctor or grocery store could kill one or both of us. If we get sick, she will likely get sick too. If I die, and she doesn’t, she will be back in a nursing home, which I worked so hard to get her out of 20 years ago. This increased strain on an already overburdened system is one we should not risk by leaving family caregivers unvaccinated. And, given the high number of COVID-related deaths in nursing homes, they feel like a death sentence.
With a deadly pandemic swirling around us, illness and death is an ever-present reality. As the vaccine is rolling out, I am glad to know that my mother is eligible for a shot. She will be protected, but what about my husband and me? If we had to quarantine, due to exposure, she would require round-the-clock care, which would put an additional and costly strain on the health care system. We live with my mother to ensure she has a good quality of life, but if we aren’t protected, the uncertainty of our lives not only continues, but also increases. My mother needs us, our city and state needs us to care for her and our nation’s health care system would crumble without the unpaid work of the 53 million family caregivers throughout the United States. But who will care for us?
Maggie Ornstein, PhD, MPH is an expert on family caregiving and long-term care; she is a member leader of the NY Caring Majority and teaches public health and psychology at Sarah Lawrence College.