Household Caregivers, Routinely Left Off Vaccine Lists, Fear What Would Occur ‘If I Get Sick’

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Family Caregivers, Routinely Left Off Vaccine Lists, Worry What Would Happen ‘If I Get Sick’

Robin Davidson entered the lobby of the Houston Methodist Hospital, where her 89-year-old father Joe was being treated for a flare-up of heart failure.

This story also ran on CNN. It can be republished for free.

Before stretching, a number of people were waiting to get Covid-19 vaccines. "It was excruciating to know I couldn't get into that line," said Davidson, 50, who is devoted to her father and usually looks after him all day. "If I got sick, what would happen to him?"

Tens of thousands of middle-aged sons and daughters caring for older relatives with serious ailments but too young to qualify for a vaccine also fear getting sick and wondering when they will be protected from the coronavirus can.

Like carers and other nursing home workers, these family caregivers routinely administer medication, monitor blood pressure, cook, clean, and help relatives wash, dress, and use the toilet, among other things. But they do this in apartments and houses, not long-term care facilities – and they are not paid.

"Except for their name, they are important health workers, caring for the very sick, many of whom are completely dependent on them, some of whom are dying," said Katherine Ornstein, a nursing professional and associate professor of geriatrics and palliative care of Mount Sinai Medical School in New York City. "However, we do not recognize or support them as such, and that is a tragedy."

The distinction is critical as healthcare workers receive a priority covid vaccine, along with vulnerable older adults in nursing homes and assisted living facilities. But family members who care for equally vulnerable seniors who live in the community are considered part of the general population in most states and may not receive vaccines for months.

The exception: Older caregivers may qualify for vaccines based on their age, as states approve vaccines for adults 65, 70, or 75 years old. Some states have put family carers into phase 1a of their vaccine implementation, the top priority. Specifically, South Carolina has done so for families caring for medically ill children, and Illinois has given that designation to families caring for relatives of all ages with significant disabilities.

Arizona is also trying to accommodate caregivers to escort elderly residents to vaccination sites, said Dr. Cara Christ, director of the state Department of Health, during a Zoom briefing for President Joe Biden on Monday. Comprehensive data on which states grant priority status to family carers are not available.

Meanwhile, the Department of Veterans Affairs announced plans to offer vaccines to those participating in its comprehensive family carer support program. This initiative provides grants to family members caring for veterans with serious injuries. According to the VA, 21,612 veterans are enrolled, including 2,310 aged 65 and over. Family members can be vaccinated if the veterans they care for are eligible, a spokesman said.

"The current pandemic has increased the importance of our caregivers, whom we recognize as valuable members of veteran's health teams," said Dr. Richard Stone, VA, Assistant Under Secretary of State for Health, in the announcement.

An estimated 53 million Americans are caregivers, according to a 2020 report. Nearly a third spends 21 hours or more per week helping older adults and people with disabilities with personal hygiene, household chores, and grooming (giving injections, tending to wounds, giving oxygen, and more). An estimated 40% offer high-intensity nursing, a measure of complicated, time-consuming nursing needs.

This is the group that should be receiving vaccines, not caregivers living at a distance or not providing direct, hands-on care, said Carol Levine, senior fellow and former director of the Families and Health Care Project at United Hospital Funds in New York City.

Rosanne Corcoran, 53, is among them. Her 92-year-old mother, Rose, who has advanced dementia, lives on the second floor of their home with Corcoran and her family in Collegeville, Pennsylvania. She hasn't come down the stairs in three years.

"I wouldn't be able to take her anywhere to get the vaccine. She has no stamina," said Corcoran, who makes sure doctors make house calls when her mother needs attention. When she recently called her doctor's office, an administrator said they would not have access to the vaccines.

Corcoran said she "does anything for her 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 to provide relief. But in March of last year Corcoran let go of the companion and took care of her mother herself.

Corcoran wishes she could be vaccinated sooner rather than later. "If I got sick, God forbid, my mother would end up in a nursing home," she said. "The thought that my mother has to leave here, where she knows she is safe and loved, and has to go to a place like this, makes me sick."

Although there are increasing cases of residents and staff receiving vaccines in nursing homes and assisted living facilities, 36% of deaths during the pandemic have occurred in these settings.

Maggie Ornstein, 42, a nursing professional who teaches at Sarah Lawrence College, has been closely mentoring her mother, Janet, since Janet had devastating brain aneurism at the age of 49. For the past 20 years, her mother has lived with Ornstein and their family in Queens, New York.

In a recent statement, Ornstein urged New York officials to acknowledge the contributions of family carers and classify them as essential workers. "We are used to being abandoned by a system that is supposed to help us and our loved ones," she told me in a telephone conversation. "But the total neglect of us during this pandemic – it's shocking."

Ornstein estimated that the state's nursing homes would be overwhelmed by requests from desperate families if even a quarter of the 2.5 million family carers in New York fell ill with Covid and could no longer continue. "We don't have the infrastructure and yet we pretend this problem just doesn't exist," she said.

In Tomball, Texas, Robin Davidson's father was independent before the pandemic, but he began to decline when he stopped going out and settled down. For nearly a year, Davidson has been driving to his 11 acre ranch 5 miles from where she lives every day, taking care of him and the upkeep of the property for hours.

“When I walked in every day, I wondered if I was careful enough (to avoid the virus). Could I have picked up something at the store or got gasoline? Will I be the reason why he dies? My constant proximity to him and my care for him is terrifying, "she said.

Since her father was hospitalized, Davidson's goal has been to stabilize him so he can enroll in a clinical trial for heart failure. Drugs for this condition are no longer working and fluid retention has become a major problem. He's now at home on the ranch after spending more than a week in the hospital, and he's been given two doses of vaccine – "an indescribable relief," Davidson said.

Out of the blue, she received a text from the Harris County Health Department earlier this month after putting herself on a vaccine waiting list. There were vaccines, it said, and she quickly signed up and got a shot. Davidson eventually became eligible because she has two chronic conditions that increase her risk for Covid. Harris County does not officially recognize family caregivers in its vaccine allocation plan, according to a spokesman.

KHN (Kaiser Health News) is a non-profit health news service. It is an editorially independent program of the KFF (Kaiser Family Foundation) that is not affiliated with Kaiser Permanente.

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