Jimmy and Rosalynn Carter are once again proving they are all of us.
Decades after Americans discovered their simple peanut farmer schtick was in fact their reality, the former first couple have led lives marked by humility, grace and acceptance.
Now in their late 90s, the Carters continue to move us to be better through messages now conveyed by their family. Their support for others less blessed financially remains inspirational, their generosity aspirational.
But in the twilight of their lives, we are reminded that they are at the end of the day a normal couple facing the very basic challenges typical of advanced age. Both are grappling with how to live out their days and where to turn for help with issues of aging — and dying.
Dementia strikes an estimated 10 million new patients every year worldwide. Recently, it came for Mrs. Carter.
In announcing the news last week, the Carter family was seeking not just to update the nation on her personal health but to continue breaking down the stigma and fear surrounding Alzheimer’s and other dementias.
“We recognize, as she did more than half a century ago, that stigma is often a barrier that keeps individuals and their families from seeking and getting much-needed support,” the statement said. “We hope sharing our family’s news will increase important conversations at kitchen tables and in doctor’s offices around the country.”
President Carter is in the final stages of his own decline, opting into hospice care in February after being hospitalized several times for an undisclosed illness.
Experts also said that President Carter likely wanted to bring attention to hospice care and its availability under Medicare. A champion of global healthcare, he ultimately decided that the best place for his final weeks of care would be the home he shares with his wife of 76 years.
He is already inspiring a dialogue about hospice care, especially since he’s been able to remain at home in Plains, GA, for three months since that announcement. That’s giving the nation a better understanding of what hospice is, and what it can be.
“They’re just meeting with family right now, but they’re doing it in the best possible way: the two of them together at home,” Carter grandson Jason told the Associated Press late last month.
And here’s where we find that those humble Carters, well, they’re actually not just like the rest of us.
This is evidenced by their very ability to stay in their home and, presumably, afford the care they choose for themselves. To have seemingly unlimited resources and people from all walks of life available to tend to them, to sit with them and reminisce and serve Mr. Carter his favorite peanut butter ice cream.
For most Americans, a terminal diagnosis or the diagnosis of dementia is a life-changing event. The pronouncement of either can send us to new emotional lows, force our family members to leave work to cover basic caregiving we can’t afford to pay for, and, potentially, take us away from our loved ones and into institutional care.
For some, that institutional care is highly necessary, a way to preserve function and ensure safety. For others, it is a last resort when other means and assistance are exhausted.
In our current system, stories like the Carters’ are too far and too few between. Too many couples facing separate health battles find themselves unmoored by a move; too many must give up the comfort and peace that home provides when we might need it most.
The resources afforded to the Carters — in-home hospice care and, presumably, respite or routine caregiving for individuals with dementia — should be more readily available to everyone.
They shouldn’t only be activated when people have a few days or maybe a couple of weeks left of life (even if, technically, those benefits are available much earlier). They shouldn’t require an expensive insurance policy or budget-busting hourly rate to sustain a family (or an independent senior) through the ravages of cognitive decline.
They should be part of a healthcare system that supports quality of life right up until the last moments of life.
Regardless of whether we endorsed his politics or her traditional role as wife, we can thank the Carters for their lessons in these, their final months and years. Let’s hope policy and practicality advance so that we can all be a little more like the Carters in our own final days.
Kimberly Marselas is senior editor of McKnight’s Long-Term Care News.
Opinions expressed in McKnight’s Long-Term Care News are not necessarily those of McKnight’s.