Millions of middle-aged
women struggle to care for ailing older relatives, and the crisis is
only getting worse. So why is no one talking about it?
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| Labors of love: It took a long time for Alexis Baden-Mayer (right) to
view the uncompensated care she provides her ailing mother as a
political issue. (Pete Marovich) |
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For Alexis Baden-Mayer, who lives with and cares for her two elderly parents, the audiobook of Marcel Proust’s six-volume novel,
In Search of Lost Time,
has two distinct benefits. First, it provides 150 hours of literary
distraction. Second, it features a character who jokes about excrement.
“Play it in the car as you drive your loved-ones to doctors
appointments,” she wrote in a blog post about her caregiving experience.
“Play it each morning as you strip soiled linens from the mattresses,
make beds and fold laundry. Play it, as I have, to try to calm and
distract yourself as you bark commands to your dementia-addled mother to
wipe her butt and drop the toilet paper in the toilet.”
Baden-Mayer, a freckled forty-five-year-old, put her house on Airbnb
three years ago and moved with her husband and two kids into her
parents’ home in Alexandria, Virginia. Her mom, who has Alzheimer’s
disease, was no longer able to take care of her dad, who had suffered
from heart failure. “I didn’t really have a good idea of what I was
getting into, quite honestly,” she said, reflecting on what a truly
frank conversation with her husband would have sounded like: “What do
you think of living with my parents for about ten years while their
health declines and they die?”
When I went to visit one morning in May, her day had started at five
a.m. Hair still wet from her shower, she steered her mother through a
morning routine. She told her where to put her hands to wash herself,
then placed her mom’s feet through the leg holes of her adult diaper.
Without Baden-Mayer’s kind but firm instructions, her mother would start
staring into space, seemingly happy but unsure of where to go next.
More than once, when her mother was smiling at me, perplexed,
Baden-Mayer explained my presence. (“She’s a journalist. She’s working
on a story about family caregiving.”) The long dining room table was a
laundry-folding assembly line, piled with six people’s clothes.
Baden-Mayer is one of about thirty-four million Americans providing
unpaid care to an older adult, often a family member. Most of these
caregivers are middle-aged, and most are women. They are individually
bearing most of the burden of one of America’s most pressing societal
challenges: how to care for a population of frail elders that is
ballooning in size.
Most people assume that Medicare will cover the type of long-term
personal care older people often need; it does not. Neither does
standard private health insurance. And the average Social Security check
can only make a medium-sized dent in the cost of this care, which can
easily exceed $100,000 a year if provided in a nursing home. Medicaid,
unlike Medicare, does cover long-term care, but only for patients who
have exhausted their savings, and coverage, which varies from state to
state, can be extremely limited. So the safety net you thought would
catch you in old age is less like a net and more like a staircase you
get pushed down, bumping along until you’ve impoverished yourself enough
to hit Medicaid at the bottom.
Private long-term care insurance exists, but it’s the designer bikini
of insurance: too expensive, skimpy coverage. Since people tend to buy
it only when they know they’ll soon be making a claim, there are never
enough healthy people paying into the plans to keep them affordable.
Insurance companies have realized this and jacked up premiums—or stopped
selling policies altogether.
Meanwhile, the cost of hiring a home health aide to take care of a
frail parent can add up to $50,000 or more per year. So tens of millions
of individual women across the United States wind up providing the care
themselves for free, and bearing its cost in the form of stress, lost
wages, and lost opportunities to nourish their other needs, and their
families’. When we talked on the phone, Baden-Mayer wondered aloud, “Why
is it that we don’t have a good system that we can plug into when our
parents need care?”
Why indeed? You might expect that a problem that affects so many
people so profoundly would become a major political issue. Recent years
have seen other issues, including ones that disproportionately affect
women in their personal lives, become highly politically salient—from
sexual harassment and pay equity to the push for universal pre-K
education and improved access to child care. Yet even though American
women today are politically organized and running for office in record
numbers, elder care remains widely viewed as a purely personal matter.
You could be a news junkie, following the 2020 race closely, and have
heard nothing about it.
Why is that? And could long-term care go from being a sleeper issue to one that boosts a candidate out of the 2020 pack?
Demographic
trends have prodded and pulled America’s long-term care problem into a
long-term care crisis. A driving factor is the increasing risk of
reaching a point in our lives when we can no longer perform some of the
essential activities of daily life, from getting dressed to using the
toilet. Approximately half of us will need some form of long-term care,
and an estimated 15 percent will face related medical bills exceeding
$250,000.
Paradoxically, this is partly due to advances in medicine. Since the
1940s, for example, antibiotics have dramatically reduced the numbers of
Americans dying of pneumonia, which was once a leading cause of death
among older Americans. But advances like those mean more people are
living long enough to contract debilitating chronic conditions like
Alzheimer’s.
On the flip side are broad public health trends like obesity and the
spread of sedentary lifestyles. These have led to an epidemic of chronic
diseases like diabetes that, while not necessarily fatal, leave more
and more people struggling with disabling conditions for decades.
Then there’s the looming impact of Baby Boomers hitting retirement,
so massive that it’s often referred to in the terminology of natural
disasters, like “the gray tsunami.” If you look at a chart of the ratio
of middle-aged adults (potential caregivers) to people over eighty (the
people most likely to need care), it’s like the steep downhill of a
roller coaster, starting at seven to one in 2010, and plummeting to four
to one by 2030. In addition, average family size has shrunk
significantly since the 1970s. With smaller families now the norm, the
strain on individual caregivers within families has increased
enormously. The imbalance will become even more acute if America cuts
back on the flow of immigrants, who make up a large portion of
professional caregivers.
This was easy to see coming, by the way. As far back as 1971,
Congress held hearings on the impending crisis in long-term care, and
throughout the 1980s and ’90s, think tanks and blue-ribbon commissions
issued a stream of reports on what to do about it, predicting
catastrophic consequences by the 2020s if the problem went unaddressed.
But it did go unaddressed, perhaps because, like climate change, it was
both unpleasant to contemplate and seemingly far off in the future.
Meanwhile, other countries with aging populations, including Japan,
Canada, and most European nations, took action, offering a range of
substantial benefits to family care providers, from directly
compensating their work to subsidizing professional home care. But in
the United States, public attention to long-term care faded even as the
problem grew increasingly acute.
Sandra
Levitsky has a theory about why long-term care has not yet gained
traction as a political issue. A sociologist at the University of
Michigan, she’s the author of
Caring for Our Own: Why There Is No Political Demand for New American Social Welfare Rights,
a
book she researched in part by schlepping between adult day care
centers, nursing homes, and a hospital in Los Angeles, interviewing
caregivers and scribbling notes at the back of
support group meetings.
Levitsky found that the lack of public outcry for long-term care
didn’t reflect an absence of need. Instead, it was driven by a widely
held belief that caregiving is a family responsibility, tied up with
what it means to be a good son or daughter. And because it’s so time
intensive and takes place in the home, caregiving is often extremely
isolating, making it hard to see it as a systemic issue. One woman who
was caring for her husband told Levitsky that when she went to a support
group for the first time, “I just started to cry. I just thought, ‘My
god! I’m not in this alone!’ ”
Rachel McCullough, an organizer affiliated with Caring Across
Generations, a national campaign, noticed this while canvassing door to
door in the Bronx. She found that asking people whether they were a
caregiver didn’t really work; people didn’t identify themselves that
way. Instead, she found that to get a conversation going, she had to ask
more descriptive questions—“Have you taken care of your parents?”—or
share her own stories.
The fact that people don’t identify as “caregivers” helps to explain
why even women who are otherwise politically engaged don’t view the care
they provide to their aging parents as a political issue. Baden-Mayer
is a good example. A former women’s studies major, her laptop is as
layered with stickers as a college student’s—“Vote YES on Prop 37”—and
she works full time as a political director for a nonprofit advocacy
group for organic food consumers. In the foyer of her house hangs a
photo of a man throwing up a peace sign in front of the U.S. Capitol. If
anyone were to connect their own experience to a systemic problem,
you’d expect it to be someone like her. But she admits that, for a long
time, she really didn’t. And she definitely didn’t question the relative
silence from lawmakers on the issue.
Another barrier to politicizing the long-term care crisis is the fact
that there’s no clear bad guy. As McCullough put it: environmentalists
have the fossil fuel industry, gun control activists have the NRA, and
consumer advocates have the big banks. Who, exactly, are caregivers
fighting? Instead of feeling anger, which research shows is linked to
political activation, people struggling with providing for their parents
tend to feel guilt and shame, directing the blame inward. Once the
stressful experience is over, most people want to put it behind them.
Still, Levitsky found that some people come out of it wanting to improve
the system, particularly middle-aged women. “It was a subset of the
group, but they were really politicized,” she said. “And that’s the
constituency that I do believe could be mobilized.”
But someone is going to have to mobilize them. Even when participants
in Levitsky’s study were directly asked about whether their experience
had changed their attitude about the government’s responsibility for
helping, a common response was that they simply hadn’t thought of the
government’s role. Levitsky said, “When you believe something is so
natural, you can’t imagine things being another way.”
In
fact, when it comes to long-term care, it is possible for things to be
another way. In mid-May, for example, Washington State Governor and
long-shot presidential candidate Jay Inslee signed off on the country’s
most sweeping long-term care bill. The law provides eligible residents
with a lifetime benefit of up to $36,500 to pay for things like meal
delivery, nursing home fees, and home help, including paying a family
member who is providing care.
Passing the bill required a diverse coalition—including the nursing
home industry, home health worker unions, disability rights advocates,
and the Alzheimer’s Association—to put aside their differences and get
on the same page when talking to legislators. It helped that one of the
law’s champions, State Representative Laurie Jinkins, had both
professional public health experience—she works for a county health
department—and a personal connection to the issue. In a speech on the
state house floor in support of the bill, Jinkins explained how her
mother-in-law ended up having to spend herself into poverty to qualify
for Medicaid when she could no longer live alone.
A crucial factor in getting the bill passed was a study, conducted by
the national actuarial firm Milliman, showing that it would soon save
hundreds of millions per year in Medicaid costs. “What we found was that
it was critically important that legislators could have confidence in
the numbers,” said Sterling Harders, president of a regional SEIU union
that represents care workers, who advocated for the bill.
The law is financed by a .58 percent state payroll tax. How can the
state finance such a large new benefit with such a modest tax hike? The
key is that everyone contributes, including people who are still young
and healthy, and to reap the benefit, you have to pay into the system.
This solves the problem of adverse selection that makes the private
provision of long-term care ruinously expensive. Rather than trying to
buy insurance only when they’re old and frail enough to expect to make a
claim in the near future, Washington residents are now in effect
compelled to spread out the cost of their insurance over their entire
adult lives, making it much more affordable.
Washington’s approach is also much more efficient than expecting
people to save up a nest egg to cover the cost of their own long-term
care. Roughly half of us will never need it; among those of us who do,
some will need it only for a short time, while others will consume
hundreds of thousands of dollars of care over several years. And yet for
most of our lives we can’t really know which group we belong to. That
makes long-term care a logical candidate for financing collectively
through insurance, so long as paying into the system is mandatory. When
plans aren’t mandatory, not enough healthy, young people self-select to
buy them, and they tank. That’s one of the reasons that the Obama
administration ultimately had to pull the plug on its attempt to address
long-term care; because the program was voluntary, not enough people
enrolled, making premiums far too expensive.
That’s not to say that providing universal long-term care insurance
wouldn’t cause sticker shock when it shows up in government budgets. But
the fact is that, one way or another, society is already bearing these
costs—mostly in the form of care provided by stressed-out, uncompensated
women who have the misfortune of having a family member who needs care
and can’t afford to pay for it. What we need is a way to distribute that
burden more equitably.
You
can divide the world of politicians into two groups,” said Howard
Gleckman, a senior fellow at the Tax Policy Center. “It’s not Democrats
and Republicans, it’s people who have been caregivers and people who
haven’t.” When he’s talking to members of Congress who recognize the
problem, it’s far more likely that their understanding comes from
personal experience than from an outpouring of calls from constituents.
Gleckman himself started working on the issue after he and his wife
struggled to care for their own parents. “Don’t underestimate the
importance of policy by anecdote,” he said.
It’s a point that several other advocates and policy experts echoed.
One organizer working on caregiving issues in Michigan found an ally in a
Republican legislator with a prime perch on a budget committee. That
legislator’s mother, the organizer found out, had qualified for Medicaid
and was placed in a nursing home because there was a long waiting list
for home services.
One lawmaker who feels strongly about an issue could be worth twenty
who merely support it. A prominent example came in 2008, when Congress
voted on a bill requiring insurers to cover mental illnesses at the same
level as physical ones. It was the result of over a decade of
determined lobbying from Senator Pete Domenici, a senior Republican,
fiscal hawk, and chairman of the powerful Senate Budget Committee.
Otherwise an unlikely champion, Domenici was propelled by his daughter’s
experience with schizophrenia. He joined forces with one of the most
liberal senators at the time, Minnesota Democrat Paul Wellstone, whose
brother had suffered from mental illness, and together they built
alliances with a number of other legislators who had likewise been
personally affected.
The prospects for long-term care coverage at the national level got a
boost this past April, when Bernie Sanders added it to his single-payer
health care plan. But if support for family caregivers is to become a
priority
in the coming election cycle, it may be because some of the other
candidates have had their own brushes with long-term care. Amy
Klobuchar, the 2020 candidate with perhaps the longest legislative
history of working on issues that affect seniors, has talked about her
father’s struggle with alcoholism. Cory Booker has been vocal about
Parkinson’s disease, which his father suffered from, and is proposing an
expansion of the Earned Income Tax Credit that would give caregivers
more money. “I watched my mother be his primary caretaker, and it
affected her physical health,” he told a small crowd at a campaign event
in February. “The personal pain I saw it causing my mom was devastating
to me.” He added, “This is a common problem in our country. We are weak
in America when we let people struggle and suffer in isolation.”
Rachel McCullough, the organizer in New York, said her group is
already thinking about how to bring this issue to the forefront of the
2020 presidential campaign. They already have organizers and volunteers
working on a state campaign in Iowa, which is dense with national press
and where it’s relatively easy to get face time with candidates. In
televised town hall meetings, their Iowa counterparts may try to force
candidates to articulate a position on caregiving. McCullough said, “A
case we’re trying to make, and that we will be making to the
presidential candidates, is if their goal in the face of Trump and
Trumpism is to speak to and unite the vast majority of Americans, with a
focus on women—this is the issue.”
Full Article & Source:
The Strange Political Silence On Elder Care
