Emma Heming Willis is navigating life as best she can in the wake of husband Bruce's FTD.

LOS ANGELES — Emma Heming Willis is arguably the country's most famous caregiver right now. She's talked at length about her husband Bruce Willis's frontotemporal dementia (FTD) diagnosis and how it twisted and tangled her happy life into something devastating.

On a recent rainy day in Los Angeles, though, Heming Willis' demeanor is hardly as dreary as the weather. Her casual black top and jeans convey calmness and comfort. Someone who doesn't care what you think, and wants to make the most of the time she (and her husband) have left. For now, her movie star husband is in a stable place. The fear of what's next lingers anyway.

"That is the the anxiety, right? Like, when will the next shoe drop? But I know that when/if it does, we'll be ready," she tells USA TODAY at the EndWell Summit, a conference on death and dying for caregivers, clinicians and grief advocates.

FTD is the name for a group of brain disorders that occur due to frontal and/or temporal lobe decline. About 50,000 to 60,000 people have FTD in the United States and it causes personality changes, can lead to speech problems and is incurable. People live for about seven to 13 years after symptoms start; Willis was diagnosed in 2023.

Heming Willis, 47, has a care team in place for him and has learned so much on her caregiving journey that she's written a book about it: "The Unexpected Journey." She's as ready as she can be for the difficult moments to come. "It doesn't make it any less painful or hard to walk through," she says, "but right now, we're on stable ground."

'We're not thinking about care and our care plans'

Bruce Willis thought he was going to live forever. They never talked about end-of-life care. She didn't learn about it until she had to. Only 32% of U.S. adults have a will that details what to do with their assets and belongings once they're dead, according to Pew Research, and just 31% have a living will or advance health care directive in case they're too incapacitated to make medical decisions.

"As a society, we're not thinking about these things," Heming Willis says. "We're not thinking about care and our care plans, and we're not thinking about death. But we really, we really need to, and we need to not view it in such a dark way."

Her husband's illness woke her up. "I have a care plan for the most part that's intact and ready for my girls (daughters Mabel, 13, and Evelyn, 11), so that they don't have to make all the decisions and figure everything out," she says. "I want to just make it a little easier for them." She knows her daughters are worried about their mom getting sick, too: "I just let them know that I'm healthy. I'm caring for myself. I try and ease that worry from them as best as I can."

People think of caregiving, death and dying as a morose, debilitating experience. But it has layers. Heming Willis still jokes and smiles and watches TV and cares for herself. She hates the term self-care – a feeling that may resonate with many caregivers – and likes to frame it as trying to set aside time for yourself.

"It's important for me to find those moments that I want to make time for," she says. "I love going on hikes, like being outside in nature, connecting with my friends, window shopping with my mother. I mean, these are small, simple things that actually just feel really good and feed my soul."

'We're not there yet'

Has Heming Willis tried to prepare her kids for Bruce's death?

"We're not there yet," she says. "The girls are educated on FTD, I think that if they are to ask, I will tell them, but I think that they're more focused on present day, that is where their questioning is mostly, but if it's asked, I will always be honest and truthful."

When Heming Willis considers an afterlife, her brain jumps to her mother's friend Peg who recently died. Peg's husband had FTD. That was the first time Heming Willis heard of it, decades ago. Peg's death has dredged up those memories. As Heming Willis' mom mourned Peg, Heming Willis tried to offer comfort. Peg's husband is there, waiting for her on the other side, she found herself saying. He's healthy, in a happy place.

We can all only hope for the same.

This article originally appeared on USA TODAY: Emma Heming Willis says husband Bruce Willis 'on stable ground'

Reporting by David Oliver, USA TODAY / USA TODAY

USA TODAY Network via Reuters Connect