SUNDAY, APRIL 10 , 2022. THE WASHINGTON POST EZ EE G5
ASTRID RIECKEN FOR THE WASHINGTON POST
Denise Day, who suffered a stroke, lives with her daughter Brooke Day, who takes care of her in her apartment in Washington, D.C.
“She can’t do anything unassisted, not even eat,” said Day, who receives about $280 a day from Medicaid to care for her mother.“What would it take for me to go
back to work? It would take being
approved for home health care f or
my wife, and it doesn’t look like
that’s going to happen,” said Price,
who began working in retail as a
teenager. “So instead we’re strug-
gling to keep our heads above
water with the little bit of money
we have.”
Many c aregivers, like Price, said
they are stuck navigating a patch-
work of state and federal rules
that determine who qualifies for
home-based care and whether
family members can be paid for
caregiving. Medicaid, for exam-
ple, pays family caregivers in s ome
cases, though rules vary by state.
(New Jersey, for example, allows
spouses to be paid for care work,
while most others do not.) Medi-
care also covers some services for
homebound o lder Americans, l ike
physical t herapy, but it doesn’t p ay
for 24 -hour home care or help for
people who only need assistance
with everyday activities like bath-
ing, dressing and using the bath-
room.
In Hazard, Ky., Jennifer Noble
applied to become a paid care-
giver for her mother, but she said
she has yet to qualify because she
can’t afford the two background
checks and CPR certification it
requires. She quit her job at a
doughnut shop last summer after
her mother was diagnosed with
breast c ancer.
Her mother, who’s 69, is blind
and has lost strength in her hands
following surgery, so Noble helps
her shower, get dressed and take
medication. Even simple tasks
like opening a can of soda require
assistance, she s aid.
“My mom was a single parent,
she raised me alone, and I’m all
she’s got,” said Noble, 49. “So as
difficult as it is to watch her de-
clining daily, I’ve got to be there
for her.”
Many f ull-time caregivers don’t
return to work, but among those
who do, it generally takes about
five to seven years, said
Tr uskinovsky of Wayne State Uni-
versity. Even once they’re ready,
though, it can be difficult to over-
come the g aps i n their résumés.
Christy Xandrick didn’t think
twice before leaving her job at an
office supply company last Janu-
ary when her mother was hospi-
talized with covid. She moved in
with her 86-year-old mother and
for months managed her oxygen
tank and gave injections to pre-
vent b lood c lots. When h er mother
began feeling better in November,
Xandrick moved back into her
apartment in Burbank, Calif.
But reentering the workforce
took longer than the 60 -year-old
had expected. She applied for
about 30 jobs over the past three
months and r ecently beat out 35 0
applicants for a position as an
administrative assistant for an
artist. She isn’t sure what she and
her siblings will do if her mom’s
condition worsens, but for now
she’s h appy to be working again.
“I was chewing through my s av-
ings, trying to figure out if things
would fall into place,” she said.
“But those are the decisions you
have to make when your family
needs help.”Andrew Van Dam contributed to this
report.we’re left out of the loop without
any options.”
President Biden has made c are-
giving an economic priority. A v er-
sion of his Build Back Better Act
adopted in the House last year
contained substantial funding for
caregiving, including $150 billion
to expand in-home c are for adults.
That measure remained even as
other key provisions were
stripped out, although the legisla-
tion has stalled in the Senate.
“For millions of families in
America, this — this issue — i s the
most important issue they’re fac-
ing,” Biden said last year. “It’s per-
sonal.... Quite frankly, what we
found is that this is more popular
or as popular as anything else
we’re proposing, because the
American people understand the
need. It’s a matter of dignity and
pride for our parents.”
The financial burdens of care-
giving are often debilitating for
the lowest-income households.
Family caregivers say they spend,
on average, more than one-quar-
ter o f their annual income on care-
giving expenses, according to a
recent study by AARP. As a result,
many caregivers say they’ve had t o
stop saving money or have taken
on additional debt to make ends
meet.
John Price, 43, quit his job bag-
ging groceries at a Kansas City,
Mo., store last year to care for his
45 -year-old wife, who is disabled.
They’ve been surviving on her So-
cial Security disability payments
of $841 a month. After living in a
van for most of the p andemic, they
recently upgraded to a camper,
though they haven’t had running
water since a January freeze dis-
rupted their trailer’s plumbing
system. Without the money t o hire
a plumber, the Prices are spending
about $ 50 a month on bottled
water.ter of the country’s worker short-
fall.
“Labor shortages are impacting
these industries, making care ser-
vices extremely expensive,” said
Daniel Zhao, senior economist at
employment website Glassdoor.
“Caregiving challenges are partic-
ularly acute because of the pan-
demic.”
More Americans are in need of
care, both because of a fast-aging
population and medical needs ex-
acerbated by the pandemic, when
many routine screenings and
treatments were delayed. Older
Americans, including the baby
boomer g eneration, are hitting re-
tirement age at a rate of 10, 000
people per day. In the next 2 0
years, the number of Americans
older than 65 will more than dou-
ble, a nd t hose over 8 5 will quadru-
ple, said Poo of the National Do-
mestic Workers Alliance.
Amanda McGee, 37, lives near
Pensacola, Fla., and used up 480
hours of medical leave at her tech
job last year to care f or herself and
her parents before being fired for
being unreliable.
McGee’s father has metastatic
lung cancer and does not qualify
for veterans’ care stipends, and
her mother has movement issues
related to a degenerative spine
condition. As a r esult, McGee says,
she spends much of her time driv-
ing her parents to and from doc-
tor’s appointments and helping
them w ith meals, laundry and o th-
er basics that would make it next
to impossible to take on a 9-to-5
job. For now, she’s living on unem-
ployment benefits, though she
says it’s b een a struggle to get by.
“I’m basically a nursing assis-
tant without certification or a sal-
ary,” she s aid. “I would like to see a
lot more support — local and even
federal government-wise — for
people like me. It k ind of feels likeAlliance, a nonprofit advocacy
group. “We have massive demand
for care and the only people doing
the work are women, whether
they’re trying to juggle i t with paid
work or are being paid poverty
wages to help with c are.”
The e xpansion of family care-
giving needs during the p andemic
is directly linked to a shortage of
care w orkers, w ho often work l ong
and stressful hours for little pay,
Poo said. Even as many other sec-
tors have rapidly added jobs, hir-
ing at n ursing homes and r esiden-
tial care facilities fell in March,
according to the latest Labor De-
partment data. In all, care facili-
ties have 405, 500 fewer employ-
ees than they did before the pan-
demic — about a 12 percent drop
— accounting for about one-quar-selves. At the same time, a grow-
ing shortage of workers — both in
nursing homes and home-care
settings — has made it more diffi-
cult to secure outside help.
Beyond those who have already
quit their jobs, many more are at
risk of leaving t he workforce in the
coming years if caregiving needs
go unaddressed. One in 5 workers
are balancing paid work with
part-time care duties, putting
them at heightened risk of resign-
ing, according to the Rosalynn
Carter Institute for Caregivers.
“It’s the biggest driver of in-
equality that nobody talks about:
The caregiving burden falls al-
most completely on the shoulders
of women,” said Ai-jen Poo, co-
founder and executive director of
the National Domestic WorkersFor all the attention on parents
— and mothers in particular —
who stopped working to care for
children during the pandemic,
four times as many people are out
of the w orkforce, caring f or spous-
es, siblings, aging parents and
grandchildren, according to the
Federal Reserve’s latest Monetary
Policy Report.
Caregiving is the second-larg-
est factor keeping people out of
work, behind early retirements, a t
a time when job openings contin-
ue to outnumber potential work-
ers. That mismatch is contribut-
ing to labor shortages around the
country and playing a r ole i n over-
all inflation. Roughly one-quarter
of the workers missing from pre-
pandemic levels are on the side-
lines for caregiving reasons, ac-
cording to the report. Overall, the
economy is still short 1.6 million
workers, t wo-thirds o f them wom-
en, from early 2020.
“The pandemic has amplified a
problem that’s been endemic in
the labor force for a long time,
which is that caregiving takes a
very significant toll on both the
amount of hours someone can
work and the jobs they can take,”
said Joseph Fuller, a professor at
Harvard Business School whose
research focuses on the future of
work. “Covid was so d angerous f or
seniors that it caused people —
unfortunately mostly w omen — to
reconsider work-life balance in
ways we haven’t seen b efore.”
In interviews with more than a
dozen workers who quit their jobs
to care for family members, n early
all said they weren’t c onsidering a
return to work anytime soon. The
lack of home-care options, com-
bined with the risk of in-person
work, made it just about impossi-
ble for them to go back, they said.
Several described taking on addi-
tional caretaking roles during the
pandemic — looking after elderly
parents, for example, while also
caring f or grandchildren — which
made a return to work even less
likely.
Early in the pandemic, Lesley
Williams, 61, quit her $19-an-hour
bookkeeping job at a Seattle lum-
ber company to watch her young
grandchildren when schools shut
down. Now she’s also caring for
her 81-year-old mother-in-law,
who recently moved in from sen-
ior housing.
“I had a great job with benefits,
but as a family we had to pull
together,” said Williams, who
worked as a bookkeeper f or nearly
five years after a career in child
care. “I had reservations about
giving up work, b ut it’s t urned o ut
to be really great. I’m perfectly
happy doing t his.”
It’s unclear when, if ever, she
might return to work. By the time
her grandchildren — the y oungest
is 8 months — start kindergarten,
she’ll be of retirement age.
The relationship between care-
giving and w ork tends t o be circu-
lar: People who are already out of
work — as many were early in the
pandemic — tend to take on care-
giving roles. And once they do,
they’re less likely to reenter the
workforce, said Yulya
Tr uskinovsky, an economics pro-
fessor at Wayne State University
who studies labor, aging and the
economics of caregiving.
And while employers are in-
creasingly more accommodating
of child-care needs — offering p ar-
ents flexible schedules, in some
cases, or on-site day care — that
hasn’t b een the c ase for adult care,
which often becomes more labor-
intensive over time. In most cases,
Tr uskinovsky said, child care is
tough early on but becomes more
manageable as children g ain inde-
pendence and go to school. With
older adults, the opposite tends to
be true.
“Maybe [adults] can live inde-
pendently at first, but then they
have a fall and suddenly the pic-
ture changes. It’s much more un-
predictable,” she said. “Once you
start caregiving for an adult,
you’re probably not going to stop
until your loved one moves into a
nursing home or dies.”
Brooke Day quit her job as a
concierge at a Washington, D.C.,
apartment building in October,
shortly after her 60 -year-old
mother suffered a stroke that took
away her ability to do even simple
things without help. It’s the first
time that Day, 38, has been out of
work for more than a few weeks,
and she says she has no idea when
she might return.
“She can’t do anything unas-
sisted, not even eat,” said Day, w ho
receives about $ 280 a day from
Medicaid to care for her mother.
“... U ntil my mother leaves this
Earth, I will be out of the work-
force.”
The pandemic added an extra
layer of challenges to the already
tenuous arrangements many fam-
ilies had in place to care for aging
parents, sick spouses and disabled
siblings. As nursing homes went
into s hutdowns or weathered out-
breaks, many families took e lderly
parents home to care for them-
CARE FROM G1
Caring for parents, spouses is k eeping millions out of work
LINDSEY WASSON FOR THE WASHINGTON POST
ABOVE: Lesley Williams quit her $19-an-hour bookkeeping job at a Seattle lumber company in 2020 to care for her grandchildren when schools shut down early in the
pandemic. Now she’s also caring for her 81-year-old mother-in-law, who moved in from senior housing. “As a family we had to pull together,” Williams said.COURTESY OF COURTNEY RUSSELL
Courtney Russell left her job to care for her husband, Doug
Curtin, when he had a recurrence of cancer in early 2020.