Before her stretched a line of people waiting to get covid-19 vaccines. “It
was agonizing to know that I couldn’t get in that line,” said Davidson, 50,
who is devoted to her father and usually cares for him full time. “If I get
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 themselves are
similarly terrified of becoming ill and wondering when they can get protected
against the coronavirus.
Like aides and other workers in nursing homes, these family caregivers
routinely administer medications, monitor blood pressure, cook, clean and help
relatives wash, get dressed and use the toilet, among many other
responsibilities. But they do so in apartments and houses, not in long-term
care institutions — and they’re not paid.
“In all but name, they’re essential health care workers, taking care of
patients who are very sick, many of whom are completely reliant upon them,
some of whom are dying,” said Katherine Ornstein, a caregiving expert and
associate professor of geriatrics and palliative medicine at Mount Sinai’s
medical school in New York City. “Yet, we don’t recognize or support them as
such, and that’s a tragedy.”
The distinction is critically important because health care workers have been
prioritized to get covid vaccines, along with vulnerable older adults in
nursing homes and assisted living facilities. But family members caring for
equally vulnerable seniors living in the community are grouped with the
general population in most states and may not get vaccines for months.
The exception: Older caregivers can qualify for vaccines by virtue of their
age as states approve vaccines for adults ages 65, 70 or 75 and above. A few
states have moved family caregivers into phase 1a of their vaccine rollouts,
the top priority tier. Notably, South Carolina has done so for
families caring for medically fragile 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 who accompany older residents
to vaccination sites, Dr. Cara Christ, director of the state’s Department of
Health Services, said Monday
during a Zoom briefing
for President Joe Biden. Comprehensive data about 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 Program of Comprehensive
Assistance for Family Caregivers. That initiative gives financial stipends to
family members caring for veterans with serious injuries; 21,612 veterans are
enrolled, including 2,310 age 65 or older, according to the VA. Family members
can be vaccinated when the veterans they look after become eligible, a
spokesperson said.
“The current pandemic has amplified the importance of our caregivers whom we
recognize as valuable members of Veterans’ health care teams,” Dr. Richard
Stone, VA acting undersecretary for health, said in the announcement.
An estimated 53 million Americans are caregivers, according to a
2020 report. Nearly one-third spend 21 hours or more each week helping older adults and
people with disabilities with personal care, household tasks and nursing-style
care (giving injections, tending wounds, administering oxygen and more). An
estimated 40% are providing high-intensity care, a measure of complicated,
time-consuming caregiving demands.
This is the group that should be getting vaccines, not caregivers who live at
a distance or who don’t provide direct, hands-on care, said Carol Levine, a
senior fellow and former director of the Families and Health Care Project at
the United Hospital Fund in New York City.
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 their house. She hasn’t come down the
stairs in three years.
“I wouldn’t be able to take her somewhere to get the vaccine. She doesn’t have
any stamina,” said Corcoran, who arranges for doctors to make house calls when
her mother needs attention. When she called their medical practice recently,
an administrator said they didn’t have access to the vaccines.
Corcoran said she “does everything for her mother,” including bathing her,
dressing her, feeding her, giving her medications, monitoring her medical
needs and responding to her emotional needs. Before the pandemic, a companion
came for five hours a day, offering some relief. But last March, Corcoran let
the companion go and took on all her mother’s care herself.
Corcoran wishes she could get a vaccination sooner, rather than later. “If I
got sick, God forbid, my mother would wind up in a nursing home,” she said.
“The thought of my mother having to leave here, where she knows she’s safe and
loved, and go to a place like that makes me sick to my stomach.”
Although covid cases are dropping in nursing homes and assisted living
facilities as residents and staff members receive vaccines, 36% of deaths
during the pandemic have occurred in these settings.
Maggie Ornstein, 42, a caregiving expert who teaches at Sarah Lawrence
College, has provided intensive care to her mother, Janet, since Janet
experienced a devastating brain aneurism 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 recognize family caregivers’
contributions and reclassify them as essential workers. “We’re 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 utter neglect of us during this pandemic
— it’s shocking.”
Ornstein estimated that if even a quarter of New York’s 2.5 million family
caregivers became ill with covid and unable to carry on, the state’s nursing
homes would be overwhelmed by applications from desperate families. “We don’t
have the infrastructure for this, and yet we’re pretending this problem just
doesn’t exist,” she said.
In Tomball, Texas, Robin Davidson’s father was independent before the
pandemic, but he began declining as he stopped going out and became more
sedentary. For almost a year, Davidson has driven every day to his 11-acre
ranch, 5 miles from where she lives, and spent hours tending to him and the
property’s upkeep.
“Every day, when I would come in, I would wonder, was I careful enough [to
avoid the virus]? Could I have picked something up at the store or getting
gas? Am I going to be the reason that he dies? My constant proximity to him
and my care for him is terrifying,” she said.
Since her father’s hospitalization, Davidson’s goal is to stabilize him so he
can enroll in a clinical trial for congestive heart failure. Medications for
that condition no longer work for him, and fluid retention has become a major
issue. He’s now home on the ranch after spending more than a week in the
hospital and he’s gotten two doses of vaccine — “an indescribable relief,”
Davidson said.
Out of the blue, she got a text from the Harris County health department
earlier this month, after putting herself on a vaccine waitlist. Vaccines were
available, it read, and she quickly signed up and got a shot. Davidson ended
up being eligible because she has two chronic medical conditions that raise
her risk of covid; Harris County doesn’t officially recognize family
caregivers in its vaccine allocation plan, a spokesperson said.