Rosalynn Carter, the former first lady of the United States, once said there are four types of people: those who were caregivers, those who are caregivers, those who will be caregivers, and those who will need caregivers. Through her work with the Rosalynn Carter Institute for Caregiving, she’s ensuring this valuable part of our healthcare system is protected.
How did caring for your own father and grandfather shape your views on caregiving?
When I was 12, my father was diagnosed with terminal leukemia, and our family’s world was turned upside down. My 33-year-old mother was suddenly thrust into the role of breadwinner, caring for four children, keeping house, managing our finances, and much more. She relied on me as the eldest to help her, including with tending to my father. From watching and helping my mother, at a young age I came to know well the stress, exhaustion, loneliness and grief of caring for a loved one. My father died when I was 13. His death marked the end of my childhood.
Within a year of my father’s death, my grandmother (my mother’s mother), died unexpectedly, and my grandfather moved in with us. My mother was again thrust back into the role of caregiver for the next 26 years! She continued to simultaneously run our house and work in the local post office. I’ve never forgotten how she—how we—struggled under the weight of long-term caregiving: not just physically and financially, but emotionally as well.
How were you able to use your platform as the first lady to promote the need for better support for the caregiving community?
First ladies weren’t typically expected to have robust policy agendas. But I knew I had something to contribute to help all the families I had met on the campaign trail. I wanted to do everything possible to help create a more caring society to counter the painful loneliness and sense of helplessness that engulfed too many people.
Back then, the role of caregiver had not been defined. In fact, little consideration was given to the toll on families taking care of those with chronic illness or disability. It was just expected.
I focused my efforts on advocating for solutions to help people preserve their independence and require less care. I used my opportunities in the Georgia Governor’s Mansion, the White House, and beyond to raise public awareness and to bring to bear the experts who could create effective solutions to improve treatment and services for those living with mental illnesses, to foster resilience and independence for children and adults with physical and developmental disabilities, and to ensure that the needs of aging loved ones were met until the end of their lives.
There is still much work to be done, but the Rosalynn Carter Institute for Caregivers (RCI) and The Carter Center are making certain this advocacy remains in action.
How does mental health tie into the issue of caregiving?
The two are inseparable. Initially RCI focused on those supporting loved ones with mental health issues, but our scope quickly expanded to embrace all caregivers — many of whom will experience their own emotional struggles as a consequence of their efforts. There are now approximately 53 million caregivers in our country. And according to a recent AARP and National Alliance for Caregiving report on caregivers, 36 percent report that their situation is highly stressful. An additional 28 percent describe it as moderately stressful.
This data was collected before COVID-19 shut down many community respite supports, such as day programs and home health visits. RCI recently conducted its own survey on more than 400 caregivers across 46 states about how they were faring during the pandemic. The vast majority — 83 percent — reported increased stress related to caregiving since the start of the pandemic.
These statistics are alarming, especially since we believe the actual numbers to be much higher. If we do not prioritize the mental health of caregivers, our nation is at risk of experiencing the collapse of a major — and too often invisible — part of our health care system.
As you have stated, “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.” What would you suggest the next generation of caregivers needs in order to be the best version of caregivers possible?
I don’t think we can wait for the next generation. Those 53 million caregivers need our help and support right now. And this number will grow, especially as we learn more about the care needs of people recovering from COVID-19.
As a country, we must recognize caregiver health — including mental health — as a public health issue. For this to happen, we must continue to increase public awareness. This means improving access to information and creating a universal understanding of what it means to be in the position of tending to a family member or friend. Only with recognition can we begin to improve our current, inadequate systems of support.
Our goal must be to help caregivers embrace and thrive in their role without being consumed by it. We still have a long way to go, but I believe we can dramatically improve how we as a nation value and support the people providing care to our most vulnerable.