Robin Davidson entered the lobby of the Houston Methodist Hospital, where his 89-year-old father, Joe, was being treated for an outbreak of congestive heart failure.
In front of her, there was a line of people waiting to receive the COVID-19 vaccines. “It was distressing to know that I couldn’t get in that line,” said Davidson, 50, who is devoted to his father and usually cares for him full time. “If I get sick, what will happen to him?”
Tens of thousands of middle-aged sons and daughters who care for older relatives with serious illnesses, but too young to qualify for a vaccine, are just as afraid of becoming ill and wonder when they can be protected against the coronavirus.
As assistants and other nursing home workers, these family caregivers routinely administer medications, monitor blood pressure, cook, clean and help relatives to wash, dress and use the bathroom, among many other responsibilities. But they do this in apartments and houses, not in long-term care facilities – and they don’t get paid.
“In everything but their name, they are essential health professionals, caring for patients who are very sick, many of whom are completely dependent on them, some of whom are dying,” said Katherine Ornstein, a specialist in care and an associate professor of geriatrics and palliative medicine at Mount Sinai School of Medicine in New York City. “Still, we don’t recognize or support them as such, and that is a tragedy.”
The distinction is extremely important because health professionals have been prioritized to receive COVID vaccines, along with vulnerable elderly people in nursing homes and assisted living facilities. But family members who care for equally vulnerable elderly people living in the community are grouped with the general population in most states and can take months to receive vaccines.
The exception: older caregivers may qualify for vaccines because of their age, as states approve vaccines for adults 65, 70 or 75 or older. Some states have placed family caregivers in phase 1a of their vaccine launches, the top priority level. Notably, South Carolina has done this for families who care for clinically fragile children, and Illinois has given this designation to families who care for relatives of all ages with significant disabilities.
Arizona is also trying to accommodate caregivers accompanying older residents to vaccination sites, said Dr. Cara Christ, director of the state’s Department of Health Services, on Monday during a Zoom meeting for President Joe Biden . There is no comprehensive data on which states are granting priority status to family caregivers.
Meanwhile, the Department of Veterans Affairs recently announced plans to offer vaccines to people participating in its Comprehensive Care Program for Family Caregivers. This initiative provides financial stipends for family members who care for veterans with serious injuries; 21,612 veterans are enrolled, including 2,310 aged 65 and over, according to the VA. Family members can be vaccinated when the veterans they care for become eligible, a spokesman said.
“The current pandemic has expanded the importance of our caregivers, who we recognize as valuable members of veterans’ health teams,” said Dr. Richard Stone, VA’s undersecretary of health, said in the announcement.
An estimated 53 million Americans are caregivers, according to a 2020 report. Almost a third spend 21 hours or more a week helping older adults and people with disabilities with personal care, household chores and nursing care (giving injections , taking care of wounds, administering oxygen and much more). It is estimated that 40% are providing high-intensity care, a measure of complicated and time-consuming care demands.
This is the group that should be receiving vaccines, not caregivers who live far away or who do not provide direct and practical care, said Carol Levine, a senior researcher and former director of the United States Family and Health Project Hospital in New York City. York.
Rosanne Corcoran, 53, is among them. Her 92-year-old mother, Rose, who has advanced dementia, lives with Corcoran and her family in Collegeville, Pennsylvania, on the second floor of her home. She hasn’t come down the stairs in three years.
“I wouldn’t be able to get her anywhere to get the vaccine. She has no resistance, ”said Corcoran, who arranges for doctors to make home visits when his mother needs attention. When she called the doctor’s office recently, an administrator said they had no access to vaccines.
Corcoran said she “does everything for the mother,” including bathing, dressing, feeding, giving medication, monitoring her medical needs and responding to her emotional needs. Before the pandemic, a companion came five hours a day, offering some relief. But last March, Corcoran let his companion go and took care of his mother.
Corcoran would like to be vaccinated sooner or later. “If I got sick, God forbid, my mom would end up in a nursing home,” she said. “The thought of my mother having to leave here, where she knows she is safe and loved, and going to a place like that makes me sick to my stomach.”
Although cases of COVID are decreasing in nursing homes and assisted living facilities as residents and staff members receive vaccines, 36% of deaths during the pandemic occurred in these locations.
Maggie Ornstein, 42, a care specialist who teaches at Sarah Lawrence College, has provided intensive care for her mother, Janet, since Janet had a devastating brain aneurysm at age 49. For the past 20 years, her mother has lived with Ornstein and her family in Queens, New York.
In a recent opinion piece, Ornstein urged New York officials to acknowledge the contributions of family caregivers and reclassify them as essential workers. “We are used to being abandoned by a system that should be helping us and our loved ones,” she told me in a phone conversation. “But the total neglect of us during this pandemic – it is shocking.”
Ornstein estimated that if even a quarter of New York’s 2.5 million family caregivers became greedy and unable to continue, the state’s nursing homes would be overwhelmed with requests from desperate families. “We don’t have the infrastructure for that, but we pretend that this problem just doesn’t exist,” she said.
In Tomball, Texas, Robin Davidson’s father was independent before the pandemic, but he started to decline when he stopped going out and became more sedentary. For nearly a year, Davidson drove every day to his 11-acre ranch, 5 miles from where she lives, and spent hours looking after him and maintaining the property.
“Every day, when I arrived, I wondered if I was careful enough [to avoid the virus]? Could I have bought something at the store or got gas? Am I going to be the reason he dies? My constant closeness to him and my care for him is terrifying, ”she said.
Since his father’s hospitalization, Davidson’s goal is to stabilize him so that he can enroll in a clinical trial for congestive heart failure. Medicines for this condition no longer work for him and fluid retention has become a major problem. He is now at home on the ranch after spending more than a week in the hospital and received two doses of the vaccine – “an indescribable relief,” said Davidson.
Out of the blue, she received a message from the Harris County Health Department earlier this month, after putting herself on a vaccine waiting list. Vaccines were available, she said, and she quickly signed up and had a chance. Davidson ended up being eligible because she has two chronic medical conditions that increase her risk of COVID; Harris County does not officially recognize family caregivers in its vaccine distribution plan, a spokesman said.
Kaiser Health News is a non-profit news service that covers health issues. It is an independent editorial program by the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.