Crisis of Care: Family Caregivers Struggle With A Broken System Crisis of Care: Family Caregivers Struggle With A Broken System

There are an estimated 11 million Americans who are “sandwich generation” caregivers: They are simultaneously raising young children and caring for their aging parents, and they need help. 

This is Part One of a four-part series on sandwich generation caregivers. Check back tomorrow for Part Two. 

It started with a phone call. 

In June 2020, a doctor reached out to Amanda Vingless to let her know her father’s kidneys were failing, and he would soon need to begin dialysis. At the time, her parents lived in Connecticut, where her mother still worked full time. Vingless knew their living situation was going to have to change to accommodate her father’s health issues. 

“I literally hung up the phone that day, called my brother and my mother and we all FaceTimed,” Vingless, 37, told The Keystone. That same day, she and her husband agreed to get an addition added to their home so her father, who is now 74, could come live with them and their three children. He moved to Levittown a week later.

Almost overnight, Vingless became her father’s caregiver and had to manage his litany of medical conditions. “My father has had heart failure, goes into [atrial fibrillation],” she said. “He has high blood pressure, high cholesterol, diabetes. You name it, he’s got it.”

She’s met with nutritionists, cooks him healthy meals, fills his pill box and ensures he takes his medication, handles his doctors appointments, and does his laundry.

Vingless is lucky; she has not had to carry that load alone. In addition to having a spouse who helps out as much as he can when he’s not working, her mother moved in, too. Vingless also relies on outside resources, including Bucks County Transport to get her father to and from dialysis, as well as home healthcare agencies and nutritionists. 

Despite all this help, Vingless has had to juggle serving as her father’s primary caregiver, raising her children who range between the ages of 10 and 14, and working full-time as an administrative assistant at the Bucks County Area Agency on Aging. 

“Some days you just sit there and you think,’ How am I going to do this today? So-and-so has a sport and so-and-so has a doctor’s appointment and he needs this,’” she said. 

Managing all of her responsibilities takes a toll. “My day starts at 5:30 in the morning and sometimes my night ends at 10. It’s exhausting, it can be heavy on the heart and emotions, and emotionally and physically tiring.”

Vingless is one of an estimated 11 million Americans who are considered “sandwich generation” caregivers: They are caught in the middle of two generations, raising young children while simultaneously providing care for their aging parents. Like Vingless, many also work.

Despite being the wealthiest nation in the world, the United States lacks both a national childcare system and a national long-term care system. While there are some available resources, it’s typically up to individual families to care for their loved ones, which often comes at a significant emotional, financial, and professional cost. 

Juggling care for your kids and a live-in parent who needs help—such as a mom who struggles with simple tasks like bathing and meal preparation—while working at the same time is extremely difficult, explained Charlotte Dodge, senior policy and government affairs manager at Caring Across Generations. “You can’t actually properly take care of your kid and go out and earn an income so you can support your family if you don’t have the kind of supports and services available to you to get the care that your mom needs.”

Sandwich caregivers have struggled for years, but the coronavirus pandemic—which ravaged nursing homes, forced the shutdown of schools, daycares, and adult day centers, and exacerbated shortages in the home care workforce—forced them to step up even more. 

A 2020 study from the University of Pittsburgh found that unpaid family caregivers suffered more negative effects from the pandemic than non-caregivers and were more likely to experience social isolation, anxiety, depression, fatigue, sleep issues, financial difficulties, and food insecurity.

“Sandwich generation caregivers were really already at a breaking point, and the pandemic really shone a light on the experiences of care and what it looks like within families and who shoulders these responsibilities,” Dodge said.

In fact, according to a 2021 study from the Centers for Disease Control and Prevention (CDC),  more than half of all sandwich caregivers said they had seriously considered suicide in the past month. That is a far higher percentage than those who were just parents or just caregivers and a rate more than 10 times as high as individuals without either responsibility.

Sandwich caregivers are—to put it mildly—burnt out. 

Some help may finally be on the way though. The specific details of President Joe Biden’s Build Back Better Act are still being negotiated in Congress, but his initial proposal would:

  • provide financial assistance to increase the availability of child care and make it more affordable
  • fund free universal preschool for all 3- and 4-year-olds
  • implement a national paid family and medical leave system
  • increase pay for childcare workers to address recruitment and retention issues
  • extend the Democrats’ child tax credit expansion
  • expand Medicaid’s home and community-based care services in order to help more elderly adults age at home
  • increase pay for home care workers to address recruitment and retention issues.

These initiatives would be groundbreaking, according to Dodge. “There is a real opportunity in this moment coming out of the Biden’s administration’s Build Back Better agenda … to really transform the way that we care and invest in care infrastructure in a way that we’ve never seen before,” she said.

We’ll dive into the Build Back Better Act more later in this series, but first, let’s examine the current state of America’s care infrastructure.

America’s Care Infrastructure Leads to ‘Tremendous Expenses’

Sandwich caregivers desperately need the sort of help that Biden’s agenda would provide, but they aren’t the only ones in crisis. All parents and caregivers struggle to afford the costs of child care and elder care. But because they face both issues simultaneously, sandwich caregivers face a unique amount of stress and pressure. 

“If you are somebody who is raising young children and you’re paying for childcare or daycare or whatever it is, maybe trying to save up for tuition for college, and then you [also have] a parent who’s now aging—maybe developed Alzheimer’s or some other sort of condition, maybe multiple conditions—and they need to have 24-hour care or they need to be put into some sort of facility, we’re talking about really tremendous expenses on both ends of the lifespan,” said Mike Wittke, vice president of research and advocacy at the National Alliance for Caregiving.

Just how out of control are costs? The average cost of infant care in Pennsylvania is nearly $12,000 per year, while the annual cost of care for a 4-year-old is just under $10,000, according to the Economic Policy Institute. While there are childcare subsidies available, they are limited and subject to stringent income requirements. 

“You have to be incredibly low-income to qualify for these vouchers and these childcare supports, and often there’s such a benefit cliff that the second you start actually earning more money, you lose your childcare benefits,” Dodge said. “Then you actually can’t stay in your job because you can’t access quality and affordable childcare with what you’re being paid.”

Costs are even more out of control on the elder care side of the ledger. Paying for full-time, in-home care can cost as much as $4,600 per month in Pennsylvania, according to a 2020 report from Genworth Financial. This price tag puts in-home care out of reach for most Medicare beneficiaries, half of whom live on incomes of less than $29,650 per year, 50% of whom have savings less than $73,800, and 10% of whom have no savings or are in debt.

The cost of long-term care facilities aren’t any better. A private room in an assisted living facility in the commonwealth costs roughly $4,000 per month, while private or semi-private rooms in nursing homes run over $10,000 monthly, according to Genworth. 

While many Americans assume Medicare covers elder care, it does not. Medicare only offers limited care for long-term illnesses or diseases, such as Parkinson’s, Alzheimer’s, or dementia. While short-term care is covered for patients after hospital discharges, Medicare does not cover the cost of health aides that provide long-term, in-home care. 

Medicaid will cover in-home care for the very poor and disabled, but services can be difficult to apply for and access. Even if individuals do qualify for care, there’s such high demand for in-home services that many states have years-long waiting lists for home and community-based services. In total, roughly 820,000 eligible beneficiaries are currently waiting on care across the US, including more than 16,000 Pennsylvanians.

You combine all that and what you’re left with is something of a classist free-for-all.

“I think like everything else currently, if you have the means, the support is out there. If you can pay for it yourself, you’re likely to be able to find better care and better support,” said Heidi Donovan, a professor of nursing and medicine and the co-director of the National Rehabilitation Research & Training Center on Family Support at the University of Pittsburgh. “It’s the rural caregivers, the poor caregivers that are more likely to report that they don’t have access to the support that they need.”

Things are only going to get worse, too. By 2040, there will be roughly 81 million people aged 65 and older in the US—more than twice as many as there were in 2000—and many of them will experience “limitations in physical health and functioning, mental health, and/or cognitive functioning.” The number of people with disabilities and other physical limitations is also growing. 

These figures mean that with each passing year, more and more Americans will join the ranks of sandwich caregivers. 

In Part Two of our series, we’ll look more closely at the psychological (and financial) impacts of being a sandwich caregiver. Spoiler alert: It’s really, really hard, but can also be rewarding. 

Part Two: The Financial, Mental, and Physical Toll of Being a Sandwich Caregiver

Q&A: 11 Million People Are Raising Kids and Caring for Parents. Here’s One Therapist’s Advice for Them.

Part Three: A List of Resources Available for Pennsylvania Caregivers

Part Four: Pennsylvania and America Are in ‘Huge Trouble’ Unless We Help Families With Caregiving