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CNAs provide more in-depth healthcare under the supervision of registered nurses.

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HHAs provide basic health services such as checking vital signs and assisting with mobility.

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Personal care aides help clients with daily living activities like bathing, dressing, and eating.

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A story from a caregiver working in an elder care facility who highlights the meaningful yet demanding nature of their job. 

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A story from a caregiver working in an elder care facility who highlights the meaningful yet demanding nature of their job. 

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Rick, Bambi's spouse, quits his work to take on the position of primary caretaker, something he has little experience with and less support for, after the 59-year-old decides to stop receiving cancer treatment and pass away at home.

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About The FilmOver the past decade, we’ve gotten better at caring for the dying. But now we have a new crisis on our hands: the plight of those who care for them. Caregiver: A Love Story highlights an essential, yet largely unseen workforce—the family caregivers of America. While most documentary films about death focus on people who are dying, Caregiver: A Love Story directs our attention to the millions of family caregivers who support them at home. When 59-year-old Bambi decides to forgo further treatment for her cancer and die at home, her husband Rick leaves his job to become her primary caregiver—a role for which he has no experience and little support. Their journey begins on a high note. Her pain is finally under control and family and friends flock to her bedside. Death may be fast-approaching, but there is an air of celebration, even optimism. The atmosphere changes quickly when family members must return to their homes abroad and Rick is left to manage Bambi’s growing needs on his own. Without a full night’s sleep in months, the around-the-clock responsibilities eventually send Rick into a state of physical, financial, and emotional exhaustion.Caregiver: A Love Story challenges viewers to acknowledge the growing strain placed on family caregivers and to envision a new approach.

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Caregivers often describe deep satisfaction from improving the quality of life for others. This motivation is one of the driving forces behind their dedication.

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A personal reflection from a caregiver who discusses how caregiving became a fulfilling part of their life, despite its challenges.

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Finding Fulfillment In Caregiving - Caring Careers Start Here

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From engineering to long-term care, Gladys followed her passion for helping others and found personal fulfillment in her caregiving career.

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Many caregiving positions offer flexible hours, which can be ideal for people balancing other commitments like family or education.

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Paid caregiving allows individuals to build medical, interpersonal, and problem-solving skills, offering opportunities for career progression in healthcare fields.

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“I Feared His Death from the Day I Learned My Father Was 70 When I Was 10”

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“I Feared His Death from the Day I Learned My Father Was 70 When I Was 10”

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The writer's world fell apart when her father outlived her much younger mother. However, when she was sitting by his hospital bed, she realized the true meaning of love.

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“I Feared His Death from the Day I Learned My Father Was 70 When I Was 10”

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When her dad outlived her much younger mother, the writer’s world was shattered—until she discovered the deepest meaning of love sitting by his hospital bed.

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The aging population is increasing demand for caregivers, while worker shortages create an unsustainable load for existing caregivers.

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"The Caregiver Shortage: Which States Are Doing Best?"

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"The Caregiver Shortage: Which States Are Doing Best?"

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As the American population ages, the country struggles to meet the increased need for hired caretakers.

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Mesothelioma Center - Vital Services for Cancer Patients & Families

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Nationwide Caregiver Shortage I Best & Worst States Ranked

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The caregiver shortage may impact 20 million people with disabilities. Understand key shortage statistics and see which states rank the best for caregivers.

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Paid caregivers often make close to minimum wage, with few benefits, even though their work is essential to the healthcare system. The fight for better wages and protections continues to be a topic of discussion in government.

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"Caregiving Costs Outpace Inflation, But Caregivers Still Lack a Living Wage"

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"Caregiving Costs Outpace Inflation, But Caregivers Still Lack a Living Wage"

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National Partnership for Women & Families

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Care work is the work that makes all other work possible. Whether caring for children, disabled people or the elderly, care workers provide vital services that allow people to enter the labor force while knowing their loved ones are being taken care of. This benefits not only individual families, but our country overall by growing our economy. But we're based in a paradigm where care is largely treated as an individual responsibility, expecting families or individuals to figure out how to acquire and pay for care on their own.

Like most long-standing frameworks in the U.S., our conceptions of caregiving are rooted in sexism, racism and ableism. Enslaved Black women were made to care for white families while being forcibly separated from their own, and care work is still often dismissed as " women's work" that is disproportionately provided by Black, Latina, AANHPI, immigrant, older and disabled women. Even though they are essential workers, paid care jobs are not " good jobs" - that is they generally pay low wages and don't have benefits such as access to healthcare, paid sick days, paid leave, union protections or retirement benefits. At the same time, family pocketbooks are increasingly squeezed by care priced like it's a luxury and not a necessity. This leaves both families and workers struggling to make ends meet, while businesses often operate on small margins.

The three care industries - nursing and residential care facilities, child care, and home health care - have not experienced the same level of job growth as the rest of the economy in the COVID-19 recovery. While the growth in home health care jobs compared to the pre-pandemic baseline surpassed total nonfarm job growth in 2023, both child care jobs and nursing and residential care jobs are lagging behind. Meanwhile the need for care remains immense; almost 700,000 people were on Medicaid Home- and Community-Based Services waiting lists last year, more than 20 percent of states have waiting lists for child care assistance and home health and personal care aides are projected to account for more than 1 out of 6 new jobs created in the next decade. In order to keep up with the demand for paid care workers, these jobs must increase their pay to reflect the true value of the work they're providing and compete with other professions for workers - and they must do so without increasing the burden for families.

Over the past few years, wage growth picked up for workers being paid low wages, including care workers, and outpaced overall wage growth likely due to the tight labor market and state minimum wage increases. The American Rescue Plan stabilized the child care industry with $24 billion from April 2021-September 2023, which likely helped wage growth for child care workers keep pace with the economy as a whole and bring back lost jobs. But these higher wages could not be considered a living wage for anyone with a child anywhere in the country, and wage gains have been uneven for paid caregivers across sectors over the pandemic years.

Unfortunately wages for these paid caregivers still remain far below the wages that all workers are taking home. While some are citing the nominal wage gains as a win for care workers, after accounting for inflation the real wage gains aren't helping care workers as much as they should. In fact, National Partnership analysis of the Bureau of Labor Statistics' Occupational Employment and Wage Estimates median hourly wages in 2019 for Nursing Assistants, Childcare Workers, and Home Health and Personal Care Aides were 25 percent, 39 percent and 37 percent lower than the median hourly wages across all occupations. In 2023, that gap only closed slightly to 21 percent, 37 percent and 30 percent respectively. And even though wages for paid caregivers aren't high enough for these invaluable workers, individuals and families who need these services are being priced out by ever increasing costs, with costs for the three care industries having outstripped overall inflation for the past decade while still not capturing the true value of this work.

As Treasury Secretary Janet Yellen says, care is a market failure, with all of society enjoying the benefits of care, but only some individuals paying the costs while relying on a workforce that isn't fully compensated for their labor. This failure especially impacts women, who are disproportionately pushed out of the workforce over childcare and eldercare costs. And while this could be contributing to women feeling worse about the economy than men, we know that investing in care leads to women returning to the workforce, gaining economic power, and contributing tax revenue. In fact, if the women in the U.S. worked at the same levels as women in other countries with stronger caregiving policies, the economy would add another $775 billion in activity each year.

We know that care can't wait, and it will require big, federal investments to create high quality care jobs and ensure that families aren't overburdened by the cost of care. Like other investments, these will pay dividends, not just for all of us who will require care in our lives and for the economy at large, but also for the millions of workers providing this care. Continuing this unstable and unsustainable business model of care will force more women out of the workforce at the cost of their own careers, retirements, and ambitions, hampering our economy along the way.

Thank you to Kate Gallagher Robbins, Molly Kozlowski, Jessica Mason, Gail Zuagar, Mettabel Law and Sharita Gruberg for their significant contributions to this piece.

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Caregiving Costs Outpace Inflation, But Caregivers Still Lack a Living Wage | National Partnership for Women & Families

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Paid caregiver wages compared to economy-wide wage changes and inflation in care costs over the past few years show that we still need large federal investments in all types of care.

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During the COVID-19 pandemic, many caregivers faced unsafe working conditions and personal risk. This led to renewed attention on the lack of protections and systemic support for these workers.

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Issues surrounding caregiving have been all over the news lately, particularly those pertaining to working circumstances and the social importance placed on these crucial roles.

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Issues surrounding caregiving have been all over the news lately, particularly those pertaining to working circumstances and the social importance placed on these crucial roles:

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"Family caregivers of people with long COVID bear an extra burden"

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"Family caregivers of people with long COVID bear an extra burden"

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Louise Salant, 72, and her aunt Eileen Salant, 86, became seriously ill with COVID-19 in 2020. As Eileen acquired long-lasting COVID symptoms, so did Louise, who struggled with weariness and shortness of breath while still caring for her aunt. Nearly three years later, home health workers like Elfnesh Legesse help Louise care for her aunt.

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For Louise Salant, long COVID has meant new stress, new responsibilities, and multiple medical crises to manage. It's transformed her life.

But there's a twist. She's had to deal with this condition not just as a patient but also as a caregiver for her 86-year-old aunt Eileen Salant, who has coped with long COVID's disablingsymptoms for almost three years.

Eileen and Louise both caught an acute bout of COVID-19 in March of 2020. Eileen had been taking care of her brother, who was admitted to a New York City hospital with heart failure during those dark days of the early pandemic. He got COVID there, and died from his infection with the virus. Both aunt and niece also became very ill.

It was early days of the pandemic in New York, and hospitals were so crowded that Louise was told to stay home and fight out the illness on her own. Meanwhile, Eileen was hospitalized and stayed thereall spring, including two months on a ventilator. After that, she spent five months at a rehab hospital. She finally came home to her apartment in Riverdale, the Bronx, the day before Thanksgiving in 2020- but she was very weak.

"She could barely sit up in bed, couldn't hold a fork," says Louise, who lives a 10-minute taxi ride away.

Over the years, Louise, now 72, has worked at various times as an art therapist, taught piano to children and adults and done medical interviewing for a cancer research team. But when COVID hit, all that ground to a halt. Though s he hadn't always been emotionally close to her aunt, she says, she took on the caregiving role, "because someone needed to" - even as she, too, dealt with her own symptoms of long COVID, including crushing fatigue and shortness of breath.

An overwhelming need

Louise Salant set about organizing home aides, occupational therapy and physical therapy for her aunt and oversaw all other aspects of the older woman's care. She had to learn to deliver injections of blood thinning medicine, then trained the aides to do it too. For months, she kept track of Eileen's expenses, maintained all her medical information and patient history, and ran all her errands.

She found that being a caregiver for someone with long COVID, as for other serious and chronic medical conditions, is not just being an aide. It's running the patient's life. "Every single day, there's something she'd need," Louise says. "I was dealing with the pharmacy, dealing with the doctor, keeping her schedule. And when I'm not there, I'd worry. I have to always be available on the phone."

Between 8 and 23 million Americans are thought to have long COVID - meaning they have long-lasting symptoms that endure or arise months after infection, such as difficulty concentrating ("brain fog"), extreme tiredness, anxiety and shortness of breath. But there is no solid estimate of how many need caregiving help. Stats from one clinic hint at the size of the problem: Out of the 1,782 patients seen at the Penn Medicine Post-COVID Assessment and Recovery Clinic between June 2020 and January 2023, about one-fifth said they felt uncomfortable dealing with daily activities like driving, shopping, or using public transit, suggesting the need for a caregiver.

And, like roughly 40% of U.S. caregivers, Louise had her own chronic health problems to manage. It was the exhaustion of long COVID that almost took her under, especially in the first months of caregiving. After three or so hours of helping her aunt, she says, "this sickening feeling would come over my whole body, and I'd have to go home. I'd be in bed sick for two or three days." In August 2021, Louise got a new inhaler from her lung doctor that helped her breathe better and started to give her more energy.

Why caregiving is harder when the medical condition is new and poorly understood

Stories like the Salants' reveal another unfortunate reality about dealing with a complex chronic disease like long COVID, in contrast to an illness with a more straightforward diagnosis: Meeting the demands of the health care system itself can be a major burden. Because the medical condition is new and poorly understood, patients often consult multiple specialists who order a long sequence of tests to rule out other illnesses. Caregivers must schedule each of those visits, often go with the patient to the test, and often need to follow up with multiple physicians about the results.

With unpredictable symptoms that can wax and wane mysteriously, long COVID also requires exceptionally good record-keeping, in order to provide doctors with new clues. But because the disease often causes fatigue and brain fog, some patients can't keep track for themselves. They rely on friends or family for help.

"The family caregiver becomes the care manager, advocating and managing the system," the late John Schall, former CEO of the Caregiver Action Network, an education and advocacy nonprofit, told us last year. "And you're doing it by guesswork. Nobody tells you what to look for."

In interviews with a half-dozen family caregivers of people with long COVID, the complexity of managing care emerged again and again. Judith Friedman, a Brooklyn mom who is helping her adult daughter who has long COVID, maintains a list of 14 doctors she consults regularly or periodicallyand another list that includes 10 daily prescription drugs, plus supplements and other as-needed medications her daughter takes.

The task can be overwhelming even for experts. Tonya LaGrange has helped her husband Brent LaGrange since 2020 through a huge range of problems stemming from long COVID, including heart arrhythmias, joint pain, neurological problems and difficulty breathing. During doctors' appointments, she is his advocate and backstop, making sure nothing gets forgotten and details don't get lost. "It's probably why he's still alive now," LaGrange says. "I've been able to intervene when he slips through the cracks."

In 2020, at the peak of her husband's illness, she was always doing something for his care, she says, whether it was emailing case managers during the day, or monitoring his breathing at night to wake him up when he would especially struggle. It's not quite as intense now as it once was, she says, but she is still always "on" - juggling phone calls, appointments and follow-ups in between the demands of her job as the director of rehabilitation at a skilled nursing facility.

Even though LaGrange works in health care herself (including training as a physical therapist), and all her husband's doctors are in one health system she finds care management a challenge. "I know how the field works, I know the system, I know the terminology, and we're having trouble," she says. "What about people who don't have the education I have? It's devastating."

Caregivers need support, too

About half of all family caregivers say they take the lead in coordinating their ill loved one's care, according to surveys from AARP. And while hands-on caregiving can be emotionally rewarding, dealing with forms, bills and scheduling generally isn't, says Jennifer Olsen, CEO of the Rosalynn Carter Institute for Caregivers. "It's challenging to spend half your day on the phone with insurance to make sure you have the right justification for the right test," she says. "Caregiving project management is something we don't talk about."

These responsibilities add to the strain of worrying about a loved one's health and keeping the household running too. It can be intense, says Sheria Robinson-Lane, assistant professor at the University of Michigan School of Nursing, who studies caregiving. "One family member might have taken care of paying the bills, and now this person has to learn all those tasks, which wasn't part of the division of labor," she adds. "That causes stress."

Robinson-Lane recommends that caregivers move quickly to reinforce their own emotional support systems, whether that's friends, family or, ideally, a professional counselor. Local senior centers can often help people who aren't necessarily elderly, she adds: Advice and connections may be available for those over 55, or for disabled people of any age. Simply talking to your insurance provider can also point the way to assistance: "In my experience they're incredibly helpful once you get someone on the phone," says Robinson-Lane.

The next chapter of care

By the late winter of 2021, months after she first came home from the rehab hospital, Eileen Salant started feeling stronger, and by April of that year she was able to venture out to the kosher deli in her neighborhood. By March of 2022, with the help of her niece Louise, the two took longer adventures - taxi trips to Nordstrom and Saks Fifth Avenue in Manhattan. "I was just determined to get out," Eileen says.

Later that month, she had a major setback, and was hospitalized again for a week. But thanks to Louise's help, and the support of paid caregivers at home, Eileen eventually bounced back.

"She's been wonderful to me," Eileen says of Louise. "Like a daughter would help her mother." Despite the difficulty of the last few years, the two are closer now, Louise says, and have come to respect and love each other.

Louise has advice for other long-COVID caregivers: Find a doctor who is knowledgeable about the disease, or at least willing to learn more about it. She also recommends the online patient-support group Survivor Corps. "The best resource is other people," Louise says.

Other family caregivers praise the Body Politic COVID-19 support group. And LaGrange recommends simply finding someone to talk to who is not part of the family - perhaps a friend or a therapist.

Although specific treatments for long COVID are elusive so far, many people do eventually recover on their own. The biggest study so far found that long COVID symptoms endured an average of 9 months for people who'd been hospitalized with COVID-19, and 4 months for those who hadn't needed hospitalization .

Louise also reports that her long-COVID symptoms have finally eased, and she, too, is feeling better. The overwhelming fatigue seems to be gone, although she's still tired, and she even started teaching piano again for one nearby family.

She's been able to step back a little bit from her daily responsibilities in caring for her aunt, although she knows that could change at any moment. She still sleeps with her phone by her bed, she says - but now at least she sleeps through the night.
Kat McGowan is a freelance writer in California focused on caregiving. This story was produced with support from the Alicia Patterson Foundation.

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Family caregivers of people with long COVID bear an extra burden

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For Louise Salant, long COVID has meant new stress, new responsibilities, and multiple medical crises to manage. It's transformed her life. But there's a twist. She's had to deal with this condition not just as a patient but also as a caregiver for her 86-year-old aunt Eileen Salant, who has coped with long COVID's disablingsymptoms for almost three years.

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Programs like Medicaid help provide compensation for caregiving services. In some states, Medicaid allows family members to receive compensation for caregiving roles.

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Explains how Medicaid supports paid caregivers by funding caregiving services for eligible individuals.

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Medicaid.gov: the official U.S. government site for Medicare | Medicaid

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Organizations like the Service Employees International Union (SEIU) and the National Domestic Workers Alliance advocate for better pay, healthcare benefits, and working conditions for caregivers.

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Domestic work makes all other work possible.

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Domestic work makes all other work possible.

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Provides resources and advocacy tools for paid caregivers, including legal support, healthcare resources, and more.

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Support the National Domestic Workers Bill of Rights

National Campaign

Send a letter to Congress in support of the National Domestic Worker Bill of Rights - it takes just 2 minutes. Together, we have the power to make a difference and shape policies that will improve the lives of all domestic workers.

Write a Letter

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The National Domestic Workers Alliance (NDWA) works for the respect, recognition & rights for more than 2.2 million domestic workers in the US.

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Local caregiver networks and online platforms like Caregiver Action Network offer resources and support to help caregivers manage stress and isolation.

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Paid caregivers are often women, immigrants, and people of color. Many are middle-aged and older adults balancing caregiving with their own family responsibilities. According to the PHI National Data Center, 87 percent of direct care workers are women, 61 percent are people of color, 27 percent are immigrants, and 44 percent live in or near poverty. Many face challenges like lower pay, limited healthcare benefits, and precarious employment.

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NEW YORK - For a workforce comprised largely of women, people of color, and immigrants, systemic racism and gender injustice-among other inequities-are at the core of poor direct care job quality.

Today, PHI launched an institute-and released new data -dedicated to tackling these challenges and creating a stronger long-term care sector.

The Direct Care Worker Equity Institute aims to address the systemic inequities and profound disparities facing direct care workers by compiling resources and publications, producing original studies, developing advocacy tools, designing workforce interventions, and convening workforce experts-all with a clear focus on equity.

"For too long, direct care workers have faced a range of systemic inequities that harm their quality of life and devalue the direct care job," said Jodi M. Sturgeon, president of PHI, a national organization focused on strengthening the direct care workforce through research, advocacy, and workforce innovation.

"The Direct Care Worker Equity Institute further cements equity in all of PHI's strategies to transform this job and strengthen long-term services and supports for everyone," added Sturgeon.

NEW RESEARCH: PROFOUND DISPARITIES

PHI's data shows that 87 percent of direct care workers are women, 61 percent are people of color, 27 percent are immigrants, and 44 percent live in or near poverty.

A new research brief from PHI released today shows that although these segments of the direct care workforce are pivotal to the future of long-term care, they face a range of disparities that undermine their financial security.

According to this new research, women of color are a growing segment of the direct care workforce, increasing from 1.4 million workers in 2009 to 2.4 million workers in 2019-and from 45 percent to 53 percent of this workforce.

Immigrants are also a significant part of the direct care workforce, especially considering the intersection of immigration and race/ethnicity. Compared to just 6 percent of white direct care workers who are immigrants, 89 percent (nearly 9 in 10) of Asian/Pacific Islander workers are immigrants, as well as 46 percent of Hispanic/Latino workers, 29 percent of Black/African American workers, and 18 percent of workers of another race/ethnicity.

Despite comprising the majority of the direct care workforce, women and people of color in this job sector are financially less stable than their male and white counterparts, as evidenced by notable disparities in family income, poverty status, and public assistance access.

For example, 48 percent of Hispanic/Latino workers and 47 percent of Black/African American direct care workers live in low-income households, compared to 41 percent of white workers. Similarly, 40 percent of women live in low-income households, compared to 38 percent of men.

PHI's research brief recommends five key strategies for addressing these disparities: closing compensation gaps, enhancing employment benefits, adopting equity-focused direct care workforce interventions, collecting and disaggregating direct care workforce data, and setting goals for increasing diversity at every level of long-term care staffing and leadership.

"It's clear that in an already marginalized workforce, women, people of color, and immigrants generally fare worse than their counterparts, which means that we must focus significant support on these critical populations," said Robert Espinoza, vice president of policy at PHI.

A LONG HISTORY OF SYSTEMIC INJUSTICE

The disparities outlined in PHI's new brief are rooted in a long history of systemic racial and gender inequities.

From the exclusion of home care workers and other domestic workers from important New Deal protections in the 1930s to the gradual erosion of Medicaid, to the ongoing onslaught of anti-immigrant policies-and much more-racist government decisions have long harmed the health and financial security of direct care workers and other workers of color.

For centuries, systemic racism has also concentrated people of color into poor-quality, low-paying occupations, including direct care.

Gender injustice also undermines direct care jobs. Specifically, caregiving has historically been defined as "women's work" and is still often dismissed as a labor of love that requires only minimal compensation, training, and support, perpetuating poor job quality in this sector.

"To transform the entire direct care workforce, our country must confront its long and troubled history of systemic injustice that has impoverished various marginalized groups," said Espinoza.
The launch of this institute was made possible through generous funding from the Woodcock Foundation.
To learn more about the Direct Care Worker Equity Institute, click here.

Join our February 14 webinar on equity and the direct care workforce.

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PHI Launches Institute to Address Inequities in the Direct Care Workforce

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The Direct Care Worker Equity Institute will help reduce the many disparities facing women, people of color, immigrants, and others-disparities described in new research from PHI.

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Many caregivers struggle with low wages and lack of health insurance or retirement benefits, despite working long hours.

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Caregivers often form close emotional bonds with their clients, which can make the job emotionally exhausing. Physically, tasks such as lifting or moving clients can cause strain or injury.

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If only we were perfect we would not feel . . .

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If only we were perfect we would not feel . . .

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The Emotional Side of Caregiving - Family Caregiver Alliance

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Whether you become a caregiver gradually or all of sudden due to a crisis, or whether you are a caregiver willingly or by default, many emotions surface when you take on the job of caregiving. Some of these feelings happen right away and some don’t surface until you have been caregiving for awhile.…

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This article features an interview about family caregiver burnout. The author's personal experience and advice.

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Family Caregiver Burnout: This Author’s Personal Experience And Advice

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“Already Toast” author Kate Washington speaks frankly about the stresses of being a family caregiver in America

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The combination of emotional attachment, long hours, and inadequate resources often leads to burnout, where caregivers feel emotionally depleted and unable to cope with the demands of the job.

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This model describes the balance between the satisfaction caregivers gain from helping others and the emotional exhaustion they feel from being overly invested in their clients.

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This theory emphasizes the importance of relationships and empathy in caregiving roles, focusing on the caregiver’s ethical responsibility to support their client’s well-being.

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Care Ethics | Internet Encyclopedia of Philosophy

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The moral theory known as “ the ethics of care” implies that there is moral significance in the fundamental elements of relationships and dependencies in human life. Normatively, care ethics seeks to maintain relationships by contextualizing and promoting the well-being of care-givers and care-recei…

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Addresses the conflicts caregivers experience when they are pulled between their professional caregiving duties and other life roles.

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This article profiles the diversity of paid caregivers, including their demographic backgrounds and personal stories.

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These people want to improve caregiving — and have been caregivers themselves

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The Importance of Mental Health in BIPOC Communities

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The Importance of Mental Health in BIPOC Communities

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This article explores the mental health concerns confronting BIPOC communities and introduces a new, free online tool created exclusively to assist BIPOC caregivers of children with mental health issues.

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Caregiver Self-Care Checklist: Managing Stress & Support Groups

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Discover essential tips for caregiver self-care, including managing stress, prioritizing your health, and finding caregiver support groups.