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. Credit: Pete Marovich

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. 

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!’ ” 

Even though 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.

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. 

“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.”

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.”

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Grace Gedye is reporter for CalMatters. She was an editor at Washington Monthly from 2018 to 2021.