In 2020, after Dionne McCray’s stepfather collapsed unexpectedly, she made the significant choice to leave her job, sell her home in Oakland, California, and return to her childhood residence in Orange County to take care of him.

Sadly, he passed away from heart failure less than a year later, but this was just the start of McCray’s caregiving challenges. She discovered that her mother’s memory issues were much more serious than she had anticipated, prompting McCray to pause her high-paying tech career to provide almost constant care.

During the day, she ensures her 81-year-old mother eats healthily, exercises, attends medical appointments, takes her medication, and stays mentally active. At night, McCray helps her mother return to sleep and then lies awake, anxious about what lies ahead.

At 56, as her life savings dwindle due to hiring help and purchasing medical supplies, McCray is actively searching for a job and even contemplating the unthinkable—accessing her retirement funds to pay for a personal caregiver to assist her for 20 hours a week.

The emotional and financial burdens she’s experiencing have led to increased blood pressure and cholesterol levels.

“How can I ensure her well-being financially so that when the time comes for her to pass on, it can be a calm, loving situation?” McCray expressed. “Right now, I feel uncertain about the future. If her care needs increase, we simply cannot afford it.”

Even though this election year has highlighted the economy and inflation as top concerns for voters, McCray notes that the difficulties faced by families like hers are often overlooked.

Recent developments changed that narrative when Vice President Kamala Harris announced support for in-home care on “The View.” Meanwhile, former President Donald Trump’s campaign echoed a similar sentiment, indicating his support for covering home care as well.

Experts like Adam Block, an associate professor of public health at New York Medical College, see this political focus as a positive step in the days leading to the election, especially aimed at garnering support from older voters.

“Long-term care has been a neglected aspect of American healthcare for many years,” he stated.

Family Caregivers Contribute $600 Billion in Unpaid Support Annually

With the nation’s population aging, many Americans, including adult children and spouses, are taking on the responsibility of providing care so that their loved ones can remain at home and maintain some independence.

Over 20% of Americans aged 50 and above engage in caregiving activities. This largely unseen workforce contributes around $600 billion in unpaid care annually, according to AARP.

“These family caregivers are essential, not just to their own families, but also to our long-term care system,” remarked Megan O’Reilly, AARP’s vice president of government affairs for health and family.

Most seniors prefer to age in their own homes, as found in an AARP survey. However, the related costs have surged significantly.

Only 20% of Americans aged 65 and older possess the financial resources to handle severe care needs, according to research from the Center for Retirement Research at Boston College. Approximately one-third couldn’t even afford a year of minimal care.

This situation creates significant financial pressure for many families. Medicare, the federal health program for individuals over 65 and those with certain disabilities, provides limited coverage for home health aides and assistance. Families often find themselves in a position where they cannot afford private care yet earn too much to qualify for government support.

Research indicates that families typically provide about half of the total caregiving hours on their own. This balancing act frequently leads caregivers to miss work, lose their income and benefits, or even stop working entirely for periods of time.

The commitment required can be overwhelming. Nearly one-third of caregivers have been offering support to family members for five years or more, according to the National Alliance for Caregiving and AARP.

Polling conducted by AARP shows that older voters prefer candidates who prioritize the needs of caregivers. In a recent Pivotal Ventures and Morning Consult poll, 82% of respondents stated that making it easier for people to support their loved ones should be a significant or top priority for political candidates and officials.

When asked for words to share with the presidential candidates, McCray became emotional.

“People tell me: ‘You’re doing such a great job. You’re an excellent daughter.’ But at night, when I check to ensure my mom is still breathing, I wonder, where is the support?” she said through tears. “I’ve worked hard to be part of the working class, and now I feel isolated, just being waved at and told: ‘Good luck.’”

Trump and Harris Appeal to ‘Sandwich Generation’

During the Republican National Convention in July, Trump committed to enhancing and safeguarding Medicare, emphasizing home care for the elderly, although details were sparse.

According to Trump campaign spokesperson Karoline Leavitt, Trump aims to support seniors by reallocating resources to enable at-home care, removing barriers that contribute to caregiver shortages, and aiding unpaid family caregivers with tax incentives and simplifying regulations.

Harris has proposed expanding Medicare to encompass home care, a deeply personal initiative for her as she cared for her mother, Shyamala, during her battle with cancer.

This plan is another campaign commitment directed at caregivers, particularly those in the “sandwich generation,” who juggle parenting and caring for elderly relatives simultaneously.

Liz O’Donnell, a 57-year-old working mother from Boston, cared for her parents and her husband as they faced terminal illnesses. She now leads Working Daughter, an online support community for caregivers. After Harris’s appearance on “The View,” she remarked that family caregivers often express a sense of “hope.”

“This marks the beginning of a more extensive and meaningful dialogue on elder care,” O’Donnell stated.

For Lauren de la Fuente, the potential inclusion of home health care under Medicare could greatly change her situation.

In 2022, she left California to support her elderly parents in Manhattan, who are both in their 90s. Her mother has dementia, and her father occasionally falls due to mobility issues.

“I’ve worked with Fortune 500 companies and startups in Silicon Valley, but this is the toughest role I’ve ever taken on,” she shared.

With her parents’ savings and her financial contributions, the family has managed to afford the care they require, including in-home aides for 12 hours a day. However, she stressed that this arrangement isn’t sustainable or affordable in the long term.

Jason Resendez, the CEO of the National Alliance for Caregiving, argued that providing adequate support to American families facing the challenges of Medicare’s gaps, strict Medicaid regulations, and limited private sector options should transcend political divides.

“We hope all candidates will address how they plan to fill the gaps in support for family caregivers,” Resendez said. “There are numerous policy avenues to enhance support for family caregivers.”

‘Time Never Feels Enough’

Josh Hodges, chief customer officer for the National Council on Aging, pointed out that the current system of support for older adults in America is on the verge of collapse.

“We must reassess how we care for older adults in this nation,” Hodges remarked.

A critical aspect is expanding access to in-home care for more families.

Barbara Tarallo had to take care of her husband, Tom, after a motorcycle accident in 2010 left him with serious brain injuries and physical challenges.

Before hiring a home health aide, she would start her day early, assisting him out of bed, helping him use the bathroom, showering him, and feeding him. Only in the afternoon would she begin her work as a marketing and sales manager, often extending late into the night. She’d then wake up early to repeat this routine.

“It’s a daunting task, and it becomes increasingly difficult as we age,” said Tarallo, 62, from Pelham, New Hampshire. While she has the physical strength to assist her husband, “it takes a toll on you. I’ve needed physical therapy for my shoulders, knees, and back multiple times.”

Currently, Barbara has some assistance. She pays her home health aide $35 per hour for about six hours each week to help with bathing and feeding Tom, allowing Barbara some time to work during the day.

“She drives a school bus, is the same age as me, and manages to juggle two jobs,” said Tarallo.

Factoring in her aide’s pay and the medical supplies she needs for her husband, Tarallo estimates her home care costs exceed $11,000 a year. This significantly impacts the family’s annual income of about $65,000 from her job and his Social Security Disability Insurance.

However, this expense is more manageable compared to the nearly $10,000 monthly cost of a nursing home.

Tarallo expressed that receiving Medicare coverage for in-home care would be a tremendous relief, which is one of the reasons she’s supporting Harris.

“It’s incredibly burdensome physically and emotionally – just overwhelming,” Barbara Tarallo remarked. Managing in-home care while balancing a demanding job and household responsibilities means “there’s never enough time in the day.”

Sara Schmidt was just 35 when her mother, Brenda, who was dealing with early-stage Parkinson’s and dementia, suffered a severe fall in 2021. After that incident, Brenda’s health rapidly declined, a situation Schmidt compared to “a ski slope,” as she lives in Brandon, Mississippi.

Despite her professional background in helping families transition loved ones into hospice care, Schmidt found the experience to be unexpectedly challenging and costly. One major expense included covering her mother’s mortgage while awaiting the completion of probate. While Brenda had some insurance, those resources were limited.

“The funds dwindled very quickly. We had enough until we didn’t,” Schmidt explained. “It disappears faster than anyone anticipates, which creates a lot of anxiety for families.”

Like many, Schmidt believes funding home health care through Medicare would be a substantial advancement, benefiting not only families but also alleviating strain on an already burdened healthcare system. She acknowledges that the specifics matter but welcomes the proposals being discussed by the candidates.

“When can we reach a time when individuals can receive care without depleting their life savings?” she pondered.

Can the Future President Fulfill Their Pledges?

Even though politicians have made promises, public health experts remark that there is minimal political agreement on how to assist older Americans, and previous efforts to broaden in-home care services have fallen short.

“This is a major step we need to take. Eventually, we will have to make this commitment,” stated David Grabowski, a health care policy professor at Harvard Medical School. “But I am not very optimistic that we will see progress in the coming years.”

The Obama administration initiated a long-term care insurance program in 2010, but it was repealed by Congress three years later due to budget concerns, according to Tricia Neuman, senior vice president at KFF and director of its Medicare Policy Program. Additionally, the Biden administration’s proposal to allocate $400 billion to expand Medicaid home and community-based services was not approved.

Any new proposal for in-home care coverage would require congressional approval, presenting a significant obstacle. The primary concern: the associated costs.

Introducing a modest universal home care program to Medicare could cost an estimated $40 billion each year, as per a Brookings Institution analysis.

Mark Warshawsky, a senior fellow at the conservative American Enterprise Institute, has estimated Harris’ unrestricted proposal might cost over $130 billion annually, representing a 14% increase in Medicare expenditures.

Harris has claimed she would cover the expanded coverage using funds saved from Medicare drug price negotiations. However, Warshawsky doubts those savings would be sufficient.

He also expressed concern that the proposal could reduce families’ motivation to save funds, purchase private long-term care insurance, and contribute financially themselves.

“Many people are able to afford long-term home care. Some have insurance, and others possess assets from retirement accounts or property,” Warshawsky noted. “Also, if the disability is not too severe, family members can provide assistance. But if someone else is covering the costs, families may feel less inclined to help.”

Worker Shortage in Home Health Care as a Major Challenge

A critical barrier is the persistent shortage of home health and personal care aides, which is projected to worsen as the demand for in-home care escalates with the aging population.

According to Jason Fichtner, chief economist at the Bipartisan Policy Center, 2024 marks the beginning of the “Peak 65 Zone,” the most significant wave of Americans reaching 65 years of age in U.S. history. His research indicates that over 4.1 million Americans will celebrate their 65th birthday annually until 2027.

Making care more accessible may boost the demand even further, putting additional strain on an already struggling industry, according to Paul Osterman, a professor emeritus at MIT Sloan School of Management and author of “Who Will Care For Us? Long-Term Care and the Long-Term Workforce.”

The field is already experiencing significant turnover, with median wages sitting just above $16 per hour. Providers of home health care report turning away more than a quarter of referred patients because of staffing shortages, based on a 2023 analysis from trade organizations like the Home Care Association of America and the National Association for Home Care and Hospice.

With Election 2024 approaching, stay updated by signing up for YSL News’s On Politics newsletter for breaking updates and insights.

Brittany Kelly discovered this reality through her own experience. The 34-year-old mother of two from Wilmington, North Carolina, decided to leave her job to take care of her parents.

In 2022, her mother passed away after contracting COVID-19. Then in 2023, her 82-year-old father, a military veteran suffering from vascular dementia and various health issues, came to live with her.

Initially, Kelly sought to hire a personal or home health aide, but now they manage on her husband’s income as a construction worker.

“We were paying a premium, yet finding someone reliable for the role was incredibly challenging,” she stated. “So I realized that I just had to take it on myself.”

While she is uncertain if either presidential candidate will provide the necessary support, one thing is clear to her: the entire system requires significant reform.

“Unless you’ve faced a situation like caregiving or your own health challenges, it’s hard to truly comprehend,” said Kelly. “Whether it’s in-home care or elder care, it desperately needs improvement.”