Already the longest-living president in American history, the last chapter has been longer than his family expected.

Some view it as a testament to his country stubbornness and his staunch faith. Besides, this is not new to him. In 2015, after he was diagnosed with brain cancer — and gave himself weeks to live — he beat it.

“His faith story is such an important part of his life,” said Carter’s oldest grandchild, Jason Carter. “A portion of his faith that you can only live out in the end. Really reflective in a way that he hasn’t been in the past.”

Aside from a surprise appearance last Saturday at the annual Peanut Festival, Jimmy and Rosalynn Carter have remained secluded in their Plains home. Rosalynn, the family revealed in May, has dementia.

Their children, Chip, Jeff and Amy, are a frequent presence at the house. Guests, outside of close friends and family, are rare, although Sen. Raphael Warnock visited early this month to pray with the Carters.

“He still cherishes the company,” Jason Carter said. “But he has good days and bad days.”

Chip Carter said for the former president’s birthday, the family planned to do a picnic breakfast this weekend in the front yard of their Plains home, by the pond.

He said it would be a chance for more people to visit and to get his dad, who has spent much of his time in bed, out of the house.

“I don’t think they ever thought they were able to spend enough time with their families,” he said of his parents, who steered the Carter Center nonprofit, built houses with Habitat for Humanity and helped charities at home and abroad after leaving the White House in 1981.

“But, these past years, they have been able to catch up on being with their family.”

‘Who is in control’

Jason Carter admits that when Carter entered home hospice, there was a reasonable family expectation that he had “five to seven days” left. Family members scrambled to change their schedules. Even to get their funeral clothes together.

“Once he got home those issues kind of resolved. So as the months went on, everyone has gone back to their lives, while really still being there for him and her,” he said. “He knows he is in hospice. He knows he is not going back to the hospital. And that is a reflection of who he is and who is in control.”

Hospice care is typically intended for those who most likely have six months or less to live, but experts say it’s not unusual for some patients to far exceed that timeline, particularly if they opt for early enrollment.

”Many patients are referred to hospice much later in the course of their illness, and therefore the statistics are skewed toward shorter survival,” said Dr. Tammie Quest, director of the Emory Palliative Care Center. ”But when we refer patients earlier to hospice care, it’s not uncommon to see a patient continue to live longer because they have good symptom management and they have the support they need.”

These so-called early referrals contrast with the crisis mode that can take hold when patients enter hospice on the brink of death.

”We don’t have to sprint to the finish line, but walk hand-in-hand with the patient and their family at their pace,” said Quest. “The care team is able to do so much more for the patients and family when they have the opportunity to have that gentle walk rather than a race to the end.”

Sometimes, hospice care can slow a patient’s decline, said Paula Sanders, director of the Georgia Hospice and Palliative Care Organization.

Carter “has always been a leader, not in a pompous way,” said Karin Ryan, the Carter Center’s senior advisor for human rights. “So even in his dying, he is showing us how to do it. With hospice, he is being transparent and in the process, showing us how hospice care works. He is showing us how to live and how to leave the world as well.”

On his mind

Conversations between Carter and Paige Alexander, CEO of the Atlanta-based Carter Center, are not as frequent as they once were, but they continue to have meaning.

In a recent conversation, Alexander said he didn’t want to talk about politics, but rather Guinea worms.

When the Carter Center assumed leadership of the global Guinea Worm Eradication Program in 1986, about 3.5 million people in Africa and Asia were afflicted with the debilitating illness caused by the parasite. Today, Alexander said there are six cases in two countries.

“He wanted to know what the count was,” Alexander said. “Eradication is at the top of the pecking order when you are talking about diseases and no one thought it could be done. But we are getting there.”

Credit: TNS

Credit: TNS

Tributes

To mark his birthday, the Carter Center is creating a digital mosaic “painting” of Carter made up of thousands of photographs and videos sent in from supporters and admirers of the former president.

Some events celebrating Carter’s 99th birthday at the Jimmy Carter Presidential Library and Museum will be held on Saturday. Visitors will enjoy birthday cake, sign a birthday card and participate in other activities, including painting, trivia games and watching the film “All The President’s Men.”

The Atlanta-based library has helped organize a naturalization swearing-in ceremony for 99 new Americans on Sunday.

Residents in Plains will pay tribute to Carter around the rural Georgia town, according to Jill Stuckey, the superintendent of Jimmy Carter National Historical Park, although the possible government shutdown Sunday is complicating plans.

Those celebrations are on the heels of a recent concert in Madison Square Garden, where Peter Gabriel had his audience sing “Happy Birthday” in honor of Carter.

Ryan, who attended the concert, said she had asked Gabriel — a longtime friend of the Carters — to sing the tribute. The English singer agreed, but feared he couldn’t fit it into the New York City set.

“When he came out for the second encore, right before he did, “Biko,” he did it,” Ryan said. “It was wonderful and moving.”

“It has been wonderful for them to experience the outpouring of love and support that has come in many forms,” Jason Carter said of the outpouring of attention that his grandparents have gotten. “You don’t get more from a life than what they have gotten from theirs.”

On a day that he wasn’t scheduled to preach at his home church of Ebenezer Baptist Church in Atlanta, Sen. Warnock, playing the role of Rev. Warnock, called the Carters and asked if he could pay a visit. Jason Carter said his grandparents regularly “attend” Ebenezer virtually.

“It was just a remarkable private moment with both of them,” Jason Carter said. “A very interesting pastoral moment.”

Warnock read Bible scriptures to the Carters, including passages from the Book of Psalms, Proverbs 16:31, Matthew 28:20 and John 14:27.

“Here’s a man who was once the leader of the free world, and yet as I stood in the Carters’ living room and study, alongside their grandson, I was struck by the modesty of their home and lives — it could have been anybody’s grandparents’ home,” Warnock said. “Jimmy Carter was a president who walked with kings and queens and never lost the common touch.”

The Carter home is usually quiet these days, aside from the chattering of family members. Atlanta Braves games are often on the television and peanut butter ice cream is always in the freezer.

Chip Carter said his father recalls vivid details from the past, like during a conversation he had with his father about a former French leader.

“He said, ‘You know, his wife could really dance,’” Chip Carter said.

--Staff reporters Greg Bluestein and Matt Kempner contributed to this story.