Caregivers Helped Us Be a Family. Everyone Should Have That Option.
Jan. 1, 2024
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Credit...Rita Puig-Serra Costa
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* By Rachael Scarborough King
Ms. King is an associate professor of English at the University of
California, Santa Barbara.
My 7-year-old son, Carl, realized that it was Tuesday and asked why Robert
was not coming to our house that day. Robert had been a caregiver for my
husband, Ady Barkan, for more than five years, helping with Ady's day-to-day
activities as he became progressively paralyzed because of the
neurodegenerative disease amyotrophic lateral sclerosis, or A.L.S.
Tuesdays were Robert's days, when he would help Ady work during the day and
pick up Carl and his sister, Willow, in the afternoon, often going out for
an activity in our red wheelchair-accessible van. Robert also helped Ady get
into bed four nights a week, arriving around the kids' bedtime and staying
until 10 p.m.
Ady died from complications of A.L.S. in early November. Since then,
<https://www.nytimes.com/2021/09/08/opinion/als-home-health-care.html> the
bustle of caregivers around our house has been strangely suspended for the
first time in years.
The kids didn't understand why Robert couldn't come anyway, so I texted to
invite him for dinner. We had our usual Tuesday meal of tacos, which Ady had
branded "Taco Martes"; while I cooked, Carl, Willow and Robert played Uno in
the living room.
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Ady and I had close relationships with his caregivers, many of whom worked
with us for years. They allowed Ady to continue to live in our home,
surrounded by his family, even after his paralysis had progressed to the
point where I could not care for him on my own.
It's likely that most A.L.S. patients do not have access to this kind of
support - or to adequate caregiving in general. Health insurance plans cover
little, if any, in-home caregiving to assist with the tasks of daily life
(as opposed to skilled nursing services, which administer medicines and
change bandages, for example). Medicare also
<https://www.medicare.gov/coverage/home-health-services> does not cover
assistance with activities like bathing and dressing. To
<https://www.medicare.gov/basics/costs/help/medicaid> qualify for Medicaid -
which varies state by state and has lengthy
<https://www.kff.org/medicaid/issue-brief/a-look-at-waiting-lists-for-medica
id-home-and-community-based-services-from-2016-to-2023/> wait lists for home
care - patients and their families usually must exhaust almost all of their
assets first, which would have left me, as a now 39-year-old widow, with
almost no savings. We were fortunate to arrive at an ad hoc arrangement with
our health insurance company that reimbursed most of Ady's caregiving costs,
which totaled about $40,000 a month for round-the-clock care.
You read that right - by the end of his life, we paid nearly half a million
dollars a year for Ady's care. Living with A.L.S. offers an extreme example
of the care crisis that the United States is facing right now. Private
caregiving is exorbitantly expensive, even as more Americans will need paid
care in the coming years. The pandemic revealed how much our society relies
on caregivers, but we have failed to make changes to our insufficient
caregiving system. Political action to make home care more affordable and
available seems to have stalled in our divided Congress.
We cannot accept this status quo. In this election year, candidates will
present their platforms to voters. We have the opportunity to push those
seeking office to prioritize a care agenda that would recognize the
importance of caregiving to millions of people's lives. We can ask how they
will support patients and caregivers so that more people can enjoy the
quality of life that Ady's caregivers made possible.
Ady was diagnosed with A.L.S. in 2016, when Carl was 4 months old. In 2019,
he underwent a tracheotomy, which inserted a tube into his windpipe so that
a ventilator could breathe for him. A tracheotomy turns A.L.S. from a
terminal illness into a long-term condition, but it also requires constant
maintenance: suctioning secretions, changing the tubing and responding to
any alarms on the ventilator. Because Ady was paralyzed and could not
perform these actions himself, he needed 24/7 caregiving support provided by
a team of nine caregivers, including Robert.
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Early in Ady's illness, he and I had resisted hiring caregivers, wanting to
hold on to our normal life and fearing that having strangers in our home
would be too intrusive. But once we reached the stage when we needed
additional help, it turned out that having it allowed a little normalcy back
into our lives. He and I could be partners again, rather than patient and
caregiver. We could relax, chat and watch TV in the evenings, instead of my
going through an hourslong routine - after putting our children to sleep
first - to get him ready for bed. To be candid, hiring caregivers saved our
marriage.
But because of the high cost of private caregiving, most people with A.L.S.
face a choice: They can live in a nursing home, funded by Medicare, Medicaid
or private insurance; they can rely on family caregivers, who must then
often leave their jobs to provide full-time care; or they can elect to die
by physician-assisted suicide. Most simply cannot afford or get access to
the round-the-clock caregiving that is necessary for someone with the
disease and others like it.
The need for long-term caregiving is not unique to those with A.L.S. The
U.S. Department of Health and Human Services has found that
<https://aspe.hhs.gov/reports/what-lifetime-risk-needing-receiving-long-term
-services-supports-0> 70 percent of people over 65 need long-term services
and support, and that those needs are concentrated in poorer households. Yet
only about 3 to 4 percent of Americans over age 50
<https://www.nytimes.com/2023/11/22/health/long-term-care-insurance.html>
have long-term care insurance. A
<https://aspe.hhs.gov/reports/what-lifetime-risk-needing-receiving-long-term
-services-supports-0> 2019 report published by the Department of Health and
Human Services found that 48 percent of people over 65 received some paid
care, but many relied on family and other unpaid caregivers. Medicare
generally does not cover long-term care, and
<https://www.kff.org/medicaid/issue-brief/a-look-at-waiting-lists-for-medica
id-home-and-community-based-services-from-2016-to-2023/> more than 650,000
people are on Medicaid waiting lists or interest lists for home and
community-based services. As the current
<https://www.census.gov/library/stories/2023/05/2020-census-united-states-ol
der-population-grew.html#:~:text=The%20U.S.%20population%20age%2065,the%20Un
ited%20States%20in%202020.> population continues to age, more people will
need long-term care than ever before.
The care crisis also directly affects caregivers, who are overworked,
underpaid and underappreciated. The
<https://www.phinational.org/wp-content/uploads/2023/09/PHI-Key-Facts-Report
-2023.pdf> median wage for a direct care worker was $15.43 an hour in 2022,
meaning that many caregivers live in poverty and rely on public assistance.
The work can be exhausting and difficult, with many caregivers
<https://www.phinational.org/wp-content/uploads/2023/09/PHI-Key-Facts-Report
-2023.pdf> working multiple part-time jobs. However, we often devalue this
work by thinking of in-home caregivers as "help" rather than as medical
professionals.
Because we hired private caregivers, Ady and I were able to offer them
benefits such as paid sick days and a severance package when he died. His
caregivers earned a living wage based on the specialized skills required for
different aspects of the job. Early in his career, Ady helped write the
legislation guaranteeing workers in New York City paid sick leave, and he
was determined to make caregiving a stable, sustainable career. Because
training new caregivers could take weeks or months, it was crucial for him
to have a reliable crew.
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On Sept. 8, 2021, Ady
<https://www.nytimes.com/2021/09/08/opinion/als-home-health-care.html> wrote
in these pages about the benefits that his caregivers brought to his life
and called on the president and Congress to fund home care. Despite branding
caregivers as "essential workers" during the pandemic, we have failed to
make any changes to our insufficient caregiving system.
In 2022, a proposed $150 billion in funding for Medicaid home and
community-based services, or H.C.B.S., was stripped from President Biden's
Build Back Better legislation. When the reformulated Inflation Reduction Act
finally passed, it did not include funding for H.C.B.S. But the urgency of
the problems has not diminished and we must continue to call on elected
officials to act.
Officials have proposed legislative solutions to some shortcomings of our
current system. The Better Care Better Jobs Act bill, introduced into
Congress last January,
<https://www.aging.senate.gov/imo/media/doc/better_care_better_jobs_one_page
r.pdf> would expand eligibility for home and community-based services, such
as in-home caregiving, for millions of people. It would also increase wages
and benefits and help caregivers organize, making these jobs more appealing
and secure.
Another bill, the H.C.B.S. Access Act, introduced last spring, would make
H.C.B.S. coverage mandatory under Medicaid for all eligible people, helping
them move off waiting lists, as well as strengthen wages and support for
caregivers.
Neither proposal advanced out of committee, even though Americans are
largely
<https://irp.cdn-website.com/167e816a/files/uploaded/Lake.Paid.Leave.for.All
.Poll.Press%20Memo.pdf> in favor of policies
<https://press.aarp.org/2023-05-05-New-AARP-Poll-Majority-of-Voters-Want-Mor
e-Support-for-Family-Caregivers> that support paid and unpaid caregiving.
Support for caregiving is bipartisan, but funding it has unfortunately
become a partisan football, tossed back and forth in our increasingly
dysfunctional Congress. But caregiving is a way of life - a necessity
imposed upon many people who cannot afford paid caregivers, but also a
beautiful expression of love and community. Just as having caregivers in our
home allowed us to feel more like a family, so too can caregiving be both a
burden and a blessing. It was one of the most profound experiences of my
life to care for Ady as he became progressively disabled, but I could not
have done it without the caregivers, teachers, babysitters, friends and
family who have cared for Ady, our children and me over the years.
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Now that Ady is gone, I know that one of the most beautiful aspects of his
awful disease was this community of care that we created around him. Far
from disrupting our privacy, the caregivers and other friends and family who
supported us through Ady's illness allowed us to live in a more communal way
- one that Americans
<https://www.nytimes.com/2023/03/09/opinion/art-of-dependence.html> often
idealize while finding it difficult to achieve. Rather than living in a
traditional nuclear family, my children live surrounded by many loving
adults who contribute to their care.
Ady believed in a world where sick and disabled people were not isolated in
their homes or segregated in skilled nursing facilities, and where
caregiving was a career that offered dignity and financial stability. As he
frequently noted, it is unconscionable that the richest nation in the world
refuses to provide this basic social safety net for its citizens - to
fulfill the moral obligation of allowing people to maintain a sustainable
quality of life that recognizes their full humanity. After Ady's death,
leaders from across the government and public policy commemorated his
activism. One way to honor his legacy is to make sure that everyone has
access to the high-quality care that brought joy and contentment to the last
few years of his life.
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