(TNS) – 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 dedicated to his father and usually takes care of 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 helpers and other workers in nursing homes, 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 them or support them as such, and that is a tragedy.”
The distinction is extremely important because healthcare 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 moved family caregivers to 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, during a Zoom briefing for President Joe Biden.
Comprehensive data on which states are granting priority status to family caregivers is not available.
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 grants financial stipends to 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, acting deputy health secretary for the VA, said in the announcement.
Providing practical care
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 receive 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 Care Project Hospital in the city of New 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 calls 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 settings.
Maggie Ornstein, 42, a care specialist who teaches at Sarah Lawrence College, has provided intensive care for her mother, Janet, since Janet suffered 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.
Call for caregivers
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 fell ill with COVID and could not 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 the reason he died? 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.
Local angle
In the GLOW region of four counties, family caregivers are not eligible for the vaccine unless they are 65 or older or have an underlying health problem, said Genesee’s Director of Aging, Diana Fox.
“I have a friend. She is not old enough to have the vaccine and does not have a latent health problem. She travels to see her father, who is quite old. He can get the vaccine, but she cannot,” said Fox.
The director said that some of her employees who make home visits and the like do not qualify for the vaccine.
“We have, I mean, five people who would be making home visits,” she said. “The orientation continues to change about who fits into these groups and who doesn’t. We have meal drivers delivered at home, some are part of the team and some are volunteers. “
There are people aged 65 and over who also look after their parents, she said.
“They do both. People who want to be vaccinated look everywhere they can. Some of the caregivers … may be 60 years old, but their parents are quiet a little older and they may be looking for a vaccine, perhaps for their parents. I also had employees who say … I want to get vaccinated. are we qualified as (OFA) team members? ” she said.
Fox said that now that the state has changed its orientation to allow home-delivered meal drivers to be eligible for a vaccine, it would be useful to consider OFA employees who make home visits as essential workers to allow them to receive the vaccine.
“We have a phone line that we dedicate to answer questions about the vaccine. If we pick up people who don’t have access to the internet and are over 65 or under 65, who have an underlying disease … We try to help with this as much as we can. “
The Genesee County Office for the Aging offers assistance with the COVID-19 vaccine by calling (585) 813-2457 between 9:00 am and 4:00 pm and Orleans OFA assistance is available by calling (585) 589-3191 between 9:30 am and 4:00 am. : 30 pm
Includes a report by the Daily News writer Brian Quinn.
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Kaiser Health News is a national health policy news service. It is an independent editorial program by the Henry J. Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.
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