A story of resilience: Investing in caregiver experiences

As Rosalynn Carter 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, at some point in a person’s life, they will provide care to or receive care from a loved one. Their caregiving work is likely to be unpaid. It is likely an additional responsibility on top of existing family, career and personal commitments. Caregivers are likely to encounter confusing barriers to support, whether in navigating the healthcare system, securing funds to cover costs or accessing professional assistance. At any point in their caregiving career, they are likely to feel overwhelmed, burnt out and alone.

The true scope of caregiving can be difficult to measure, as many caregivers don’t think of themselves that way. 

In their 2020 survey, the National Alliance for Caregiving and AARP found that the number of family caregivers in the United States increased 9.5 million between 2015 and 2020 to a total of 53 million caregivers. That’s more than one in five Americans. The study found that family caregivers report they are in worse health now compared to five years ago. 

There is good news, though. There are organizations working to raise awareness of causes important to caregivers and to secure them the support they need.

“I’ve had everyone from the toughest of police detectives to my 12-year-old neighbor explain their caregiving story. Caregivers are everywhere,” said Dr. Jennifer Olsen, CEO at The Rosalynn Carter Institute for Caregivers, “The story you often hear about caregiving is how it causes stress and people are depressed and isolated. While those things are true, there’s also a flip side. I’m constantly amazed by the joy and strength of caregivers and the amazing set of skills they build.”

The Rosalynn Carter Institute for Caregivers (RCI), inspired by the caregiving experiences of former First Lady Rosaylnn Carter, promotes the health, strength, and resilience of all caregivers at every stage of their journey. Their programs range from one-on-one coaching to support groups covering everything from coping strategies to specific conditions, like dementia and PTSD in veterans.

One big development in RCI’s approach in recent years is the idea that supporting caregivers shouldn’t be based on the condition of the care recipient alone. 

Jennifer explained, “While you and I might both be caring for somebody with Alzheimer’s, our experiences might be really different. This might be the third relative you’ve cared for with the disease. And I might be on day two of diagnosis and need a lot more assistance. Or you might prefer a group coaching setting and I might prefer one-on-one. Those characteristics are more valuable to understand, to get us both to what we need, rather than just lumping us into the condition of the care recipient. We’re turning upside down the way we think about caregivers and recognizing that we have to take a more holistic view of their journey.”

Intersectionality is a common theme when discussing the needs of caregivers. 

Our partner, The COMMIT Foundation, provides high touch transition support to military families re-entering civilian life. They will introduce a pilot program in 2023 geared toward the needs of military spouses, including caregivers, to help them build confidence and set goals. Dr. Amy Taft, Senior Director of Education at COMMIT, has a special interest in the upcoming pilot. She is a caregiver for her husband, a veteran, as well as a mom, busy professional and MAP Fellowship Mentor.

“One of the biggest hurdles of being a caregiver is that you lose your own identity and your own ambitions and goals. You put all of that on the side in order to take care of the person that you are caring for,” Amy said, “I have tried really hard to shape my life in a way that I can continue to be me and go after my ambitions and still provide care when it is needed.”

Amy identified many needs that should be addressed, from access to mental health services to social support networks, for not only caregivers themselves but other family members in the home, particularly children. Amy noted that while she has been fortunate to have flexible employers and the ability to work from home, that’s not the reality for all caregivers who may struggle financially as a result.

Another MFF partner, Ascend at the Aspen Institute, has a Postsecondary Success for Parents initiative which focuses on the more than four million students in the US who are parents or caregivers and enrolled in an associate’s or bachelor’s degree as well as vocational and workforce pathways. This population is huge – about one in five students in undergraduate programs alone are a student parent or caregiver. 

Ascend’s work with these students is rooted in a two-generation (2Gen) approach, the philosophy that recognizing whole family units and working together with children and the adults in their lives builds family well-being. By ensuring student parents have equitable access to the resources they need to successfully graduate from college means they are more likely to earn a family-sustaining wage and to send their children to college – helping to break the cycle of intergenerational poverty. 

Like all caregivers, the needs of student caregivers are diverse. Financial aid is a major priority, not only for tuition but for child care, food and housing. There’s a need for on-campus support tailored to their specific experiences. 

“Any additional support that can be funded at colleges to provide advising and case management would be really fruitful,” said David Croom, Assistant Director for Postsecondary Achievement and Innovation at Ascend, “Student caregivers are extremely busy. They’re working full time in many instances, and they need access to advising models that will help them make good decisions around which classes to take, how many classes to take and how much they should be working.”

David described an upcoming initiative focused on two of the largest demographic segments among student parents: Black and Indigenous mothers. Based on available data, about 40 percent of Black women and 37 percent of Indigenous women enrolled in college are mothers. Ascend is launching an initiative at historically black colleges and universities and tribal colleges to provide financial and technical assistance and resources for their student parents.

Beyond support at the individual level, every organization and individual we spoke with identified policy changes that would positively impact the lives of caregivers. 

“One of our major strategies in this work is data collection,” David said of Ascend’s policy priorities. “There are not enough colleges and states collecting data on parenting status….we want to know how student parents are being impacted by these systems. And if they don’t collect the data, then you can’t do anything about it.”

Amy, who was in her thirties when she became a caregiver ten years ago, talked about expanding the Family Medical Leave Act to give it more flexibility for longtime caregivers like herself. 

At RCI, Jennifer described wide-ranging and ever-growing priorities. Their agenda centers on the idea that every sector, from SNAP benefits to public health, has a connection to and can support caregivers in a meaningful way. They’re working to put caregivers on the radar for all those different agencies. 

In the meantime, everyone who is a caregiver or works with caregivers agrees that they are an incredibly resilient group. 

Amy put it best, in describing her and other caregivers’ response to the pandemic, “All of us caregivers were literally laughing, going, ‘Oh, this is our life.’ Washing our hands all the time so that your spouse doesn’t get a disease? Okay, that’s normal. Waking up every day to figure out what your day is going to look like? That’s normal too. Figuring out new ways to do stuff? Okay, we got this.”

 

Want to support or learn more about any of the organizations featured in this article? Donate and refer a caregiver to RCI, donate to COMMIT and explore their programs or get involved with Ascend’s programs.