Up until my mother’s death from Covid last year, she had lived with significant symptoms of dementia and Parkinson’s disease that affected her ability to perform basic tasks. As a result, she needed assistance on a daily basis. Eventually this expanded to the need for 24/7 support. Since she was unable to afford an aide, private nurse, or any other paid services, this care was primarily left up to my sister and me.
This was not my first experience as a caregiver for a family member. In the past, I also assisted my disabled grandmother and cared for an assortment of other relatives over the years.
During all those periods, I was one of the many Americans in the so-called “sandwich generation,” taking care of both my own kids and older and disabled parents or other family members. These caregivers tend to mainly be women, many of whom — like me — are also juggling work and a host of other obligations.
I am far from alone. More than 43 million Americans provide unpaid care to an adult or child, with more than 34 million providing care to an adult age 50 or older. About 15 percent of those provide care to two or more older adults.
Despite managing the multiple demanding roles and responsibilities on our plates, family caregivers in low-income and working-class families generally have few, if any, resources available to support them. In our case and so many others, we also had nowhere to turn if we needed an occasional break, and no backup or emergency help to serve as a safety net.
As we observe National Family Caregivers Month in November, this is a good time to reflect on the valuable work performed by family caregivers — while also taking the opportunity to push our state and federal lawmakers to pass legislation related to policies and services that could provide much-needed support to people in caregiving roles.
Family caregivers aren’t just struggling financially, they’re also dangerously stressed
It likely isn’t the least bit surprising to learn that family caregivers are stressed — but seeing how widespread the problem is and the extent to which caregivers are strained is striking. The 2023 State of Caregiving in the U.S. Survey, conducted by A Place for Mom, revealed some sobering findings. Among the most startling: 82 percent of respondents said they’ve had to make sacrifices to provide adequate care, forgoing their own needs in the process — including including 39 percent who have let their own mental health suffer. And more than three-fourths of respondents said they need help from a professional caregiver, but just 27 percent currently have this professional support.
Perhaps the most distressing takeaway: Nearly all of the caregivers — 96 percent — feel emotionally drained from balancing the importance of caregiving with the realities of the day-to-day challenges, and more than half feel emotionally drained often or all the time.
That was definitely our reality, as my sister and I were often exhausted and frustrated by the seemingly endless tasks involved in the caregiver role. Just the insurance challenges alone were often overwhelming. My mother’s only medical coverage was through government programs, and many of our local providers didn’t accept those plans or made you jump through many hoops both before and after each appointment.
All of the time spent sorting out those red tape headaches was time we couldn’t spend taking care of our mother, our children — or ourselves. No matter how much we did — and how little sleep we got — it never felt like we were doing enough, and we lived in constant fear that something important would fall through the cracks.
It’s not just mental health worries that plague the sandwich generation, but also physical health. The CDC reports that many family caregivers get insufficient sleep and are often also dealing with their own health issues, chronic diseases, and disabilities.
And in many cases, family caregivers are also stretched to the limit financially. The State of Caregiving survey found that 75 percent of caregivers who were employed before taking on the caregiving role were forced to cut down on work or quit their jobs completely because of the demands of caregiving.
Even worse, many family caregivers suffered an additional painful financial blow this year, as pandemic-related Medicaid policies that allowed some family caregivers to be compensated for their work ended in some states and are being phased out in some others.
The value of unpaid caregiving labor is massive
While you can’t put a price tag on providing loving care to a family member, the unpaid labor provided by family caregivers does have monetary value — and it is massive. That uncompensated care provided by family members had a value of $600 billion in 2021, according to AARP. That figure is even more striking when you consider that it is more than $100 billion higher than the total out-of-pocket cost of healthcare that all Americans spent that year.
AARP found that Americans provided more than 36 billion hours of free care to older parents, spouses, partners and others — which is even more remarkable considering more than half of those caregivers were employed at least part-time.
Yet the significant labor provided without pay by family caregivers is often not acknowledged or valued by society or lawmakers. I suspect gender bias plays a large part — it’s no coincidence that most of the unrecognized and underappreciated family caregivers are women, and the burden of caregiving that falls on their shoulders has been traditionally viewed as “women’s work.”
A renewed push for lawmakers to support assistance programs and policies
AARP is among the many groups and organizations — along with community leaders — who are putting pressure on lawmakers to support family caregivers. Thanks in part to that pressure, the U.S. Department of Health and Human Services released its 2022 National Strategy to Support Family Caregivers in September 2022. The 100+-page document lists hundreds of related actions planned by more than a dozen federal agencies, along with more than 150 actions recommended for states and communities.
That sounded promising — but now, more than a year later, family caregivers are still struggling and desperate for support of all kinds. Just a few weeks ago, a group of organizations including the Economic Security Project Action coordinated an event in which a coalition of advocates, organization representatives, and individual family caregivers traveled to Washington, DC to attend a Congressional Briefing featuring Rep. Gwen Moore of Wisconsin. Earlier this year, Rep. Moore introduced The Worker Relief and Credit Reform (WRCR) Act (HR 1468), which would expand and improve the Earned Income Tax Credit.
During the briefing, caregivers shared stories illustrating the challenges and hardships family caregivers face — while also discussing how policies like the EITC and the expanded Child Tax Credit can provide valuable support.
In a statement prepared before the event, Philipa Nwadike-Laster, a Philadelphia mother of a special needs child and a homecare worker, said, “The Worker Relief and Credit Reform Act is important for families like mine which are easily forgotten, and the work we do for our families which is easily not considered as important as other forms of work.”
Caregiver support is a popular voter issue across the political spectrum
For political leaders, caregiver-friendly policies would seem to represent an easy win, as this is one of the rare social issues that has widespread support by Americans across the political spectrum. AARP found that two-thirds of voters — and three-fourths of voters over age 50 — say it is “very important” for Congress to pass laws that help allow seniors to remain in their homes — and family caregivers play a big part in that.
The AARP survey found that more than 70 percent of voters said “they would be more likely to support a candidate who backed proposals to support family caregivers, such as a tax credit, paid family leave, and more support and respite services.”
We can all do our part by pushing our lawmakers at the state and federal levels to support legislation — like that introduced by Rep. Moore — that can help family caregivers with much-needed financial support, along with promoting policies such as paid family sick leave that allow working Americans to care for family members without the worry of losing income they desperately need.
Reach out to your lawmakers and make sure they know how strongly you feel about recognizing the value of unpaid labor provided by family caregivers and the importance of supporting those who provide that care.
While I didn’t have enough support during my period as a family caregiver to my mother, I am hoping that we can have greater support systems for caregivers in place in time to help future caregivers – perhaps including my own children — and provide basic relief to make the demanding and exhausting role of caregiving just a little bit easier.