Beyond the Burden: Finding Value, Meaning and Support for Caregivers

8 minute read time.

Rosalynn Carter once said, “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” In other words, caregiving impacts all of us. Today, more than 53 million Americans provide unpaid care for loved ones. And, while necessary, it’s hurting their ability to save for the future, and causing what many refer to as a “caregiving crisis.”

In her book “When You Care: The Unexpected Magic of Caring for Others,” Elissa Strauss aims to light a fire under changemakers, encouraging them to better support and value those who provide care. And, for those in the thick of caregiving, she shares a way to look at your role to give it new meaning.

WHY CAREGIVING DOESN’T GET THE SPOTLIGHT IT DESERVES

“Care as a powerful social, economic, and political force was never something I encountered in college courses or, until very recently, political speeches,” says Strauss. She’s not alone in wondering why something that impacts so many of us doesn’t get more attention.

Strauss points to a few reasons for this. Among them, is the fact that caregiving has traditionally been women’s work. There’s also the perception that caregiving is the opposite of “go-getting.” “It’s the opposite of ‘productivity,’ it’s doing something for someone else,” she says.

That’s especially true of those who care for the elderly, as opposed to children. “At least with a child, you feel like you’re raising something that then you release into the wild, and they contribute to society,” says Strauss. “With elder care, it’s just dignity and grace. I think we have a lot of these cultural myths that underscore our fear of dependency, which makes us have this big blind spot to care.”

FINDING MEANING BEYOND THE BURDEN 

Ask a caregiver and they’ll tell you, it can be challenging in a number of ways – especially financially. Research from the Alliance for Lifetime Income shows over 25% of Americans in the Peak 65 Zone who have living parents or in-laws are providing caregiving support to them. This can have a ripple effect when it comes to their finances. Over a quarter of those in the Peak 65 Zone (28%) are providing financial assistance to adult relatives and nearly 20% say that it’s cutting into their retirement savings or income. In addition, new research from Columbia University shows unpaid caregiving can delay a person’s retirement by up to 21 years.

While caregiving can have its challenges, there are upsides to it as well. For example, in her book, Strauss points to a study of older women who are high-intensity caregivers. It showed they live longer, healthier lives. “I think these studies are really important to broaden our understanding of care, widen our aperture, and understand that it doesn’t mean it’s inevitably awful. There’s real beauty and dignity and care, as many people know,” says Strauss.

WHAT NEEDS TO CHANGE

According to an analysis from AARP, if caregivers over the age of 50 could both work and care, the U.S. GDP could grow by $1.7 trillion by 2030, and by $4.1 trillion by 2050. But how do we get there? Strauss notes there are a number of policy proposals floating around that would help.

One of them? A proposal from Vice President Harris would expand Medicare to provide home care to help families struggling with covering the cost of long-term care. Recently, President-elect Trump has expressed his support for this as well. This, Strauss says is an “absolute no-brainer.” She also advocates for an expansion of paid leave. “We often talk about paid leave in terms of babies, but we need paid leave our whole lives,” she notes.

As we look to solve the caregiving crisis, Strauss says economists also need to put more of an emphasis on the monetary value of unpaid care. “When a 65-year-old woman has to leave the workforce to care for her 90-year-old mother, we need to know the economic implications of that so then we can make the argument of why we need to support that woman so she doesn’t have to leave the workforce to care for her mother…and she’s able to do both,” she says.

FILLING THE GAP IN THE MEANTIME 

As many Americans know, the wheels of policy can turn slowly. In the meantime, there are things we can do to bolster caregivers, beginning with changing the narrative around caregiving. If you’re a caregiver, get curious about the work you’re doing. If you know someone who’s a caregiver, ask questions about their experiences. “The more the people doing the care can build a culture in which care is seen as the hero’s journey, the more those sacrifices are going to feel part of something bigger,” she says.

Second, Strauss says building a community is key. She points to a number of startups, like CaringBridge, which support family caregivers as they care for a loved one. “We’ve got to change the way we build community, because for so long, the structure of American society has moved away from these thick, communal ways of living and it hurts us as caregivers,” she explains. “I’m excited about some of the startup fixes for that, which I think can help us get closer to having the support we need.”

THE BOTTOM LINE

While Strauss notes that changing the narrative around caregiving and building community won’t take away the financial burden so many caregivers face, she stresses that continued efforts to “lift the veil off the fact that care is everywhere” are critical.

“It’s an eternal reality of human life. Without it, we wouldn’t exist, and we need to support caregivers and parents and really understand its deep importance in our personal lives and our collective lives,” she says.