AMERICUS, Ga. — Even with a dementia diagnosis, one memory shines brightly in the mind of former First Lady Rosalynn Carter.
Grandson Josh Carter says it has become a story told and retold at each family gathering.
“Every time I go see my grandmother, she tells me of the story of me bringing my youngest Jonathan over to see him play. He had this small little scooter and he would just tear all through the living room,” he said.
Josh says with his grandfather, former President Jimmy Carter, on home hospice and his grandmother, Mrs. Carter, now living with dementia, a family member is with them in Plains every day.
“Our family is like many millions of families all over the country. We stop or rearrange our lives to help the people that we love that are closest to us,” he said.
It’s a full circle moment as the champion of caregiver rights and needs now relies on them herself.
At 96 years old, Mrs. Carter is just beginning to slow her pace. For nearly eight decades, she has either lived or fought for the plight of family caregivers.
Her caregiving journey began at 13 years old with her father’s cancer diagnosis. After he and her grandmother died within a year of each other, she helped her mother care for her grandfather.
Those personal experiences, combined with many of the personal stories she heard along the campaign trail as Jimmy Carter campaigned to be governor and then president, inspired her advocacy for mental health and caregivers.
In 1987, after leaving the White House, Mrs. Carter founded the Rosalynn Carter Institute for Caregivers.
Thirty-five years later, as she begins to step back from her leadership role, the Rosalynn Carter Institute has established the Founders Fund to mark the moment and cement her legacy going forward.
“My grandmother’s quote is: ‘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’,” Josh said. “My grandparents are definitely in the last category, but they’ve lived all four stages.”
So has Josh. His son Jonathan has a rare disease and he cared for his other grandmother after a stroke.
It’s a familiar story for 53 million Americans who serve as their family’s primary caregivers.
As chair of the new Founders Fund, Josh is determined to ensure the Rosalynn Carter Institute for Caregivers will thrive for years to come.
“It’s to recognize that my grandmother is stepping back in her role leading this organization but knowing her legacy and her vision will live on,” Josh said.
Josh says his grandparents share updates about their health, even now, to normalize dealing with either mental illness or hospice care or both, emphasizing there’s nothing to be ashamed of.