LOS ANGELES —Emma Heming Willisis arguably the country's most famous caregiver right now. She's talked at length about her husbandBruce Willis's frontotemporal dementia (FTD) diagnosisand 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 haveFTDin 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."
In 1991, Willis played a private eye investigating a murder alongside a disgraced ex-football star (Damon Wayans, left) in "The Last Boy Scout." The film's director, Tony Scott, found success with movies such as "Beverly Hills Cop" and "Days of Thunder." " style="max-width:100%; height:auto; border-radius:6px; margin:10px 0;" loading="lazy" /> 
Willis and Demi Moore, whom he married in 1987, with daughters Tallulah Belle (bottom), Rumer and Scout (center). The couple divorced in 2000 but maintain a close relationship. Moore was married to Ashton Kutcher from 2005 to 2013 and they all attended the premiere of "Charlie's Angels 2: Full Throttle" at Grauman's Chinese Theatre in 2003. " style="max-width:100%; height:auto; border-radius:6px; margin:10px 0;" loading="lazy" /> 
Willis, in 2010's "Red" (with Ernest Borgnine), plays a retired CIA agent who reassembles his old team." style="max-width:100%; height:auto; border-radius:6px; margin:10px 0;" loading="lazy" /> 
Willis poses shortly before his Broadway debut in "Misery" in 2015, based on the Stephen King book (and later movie) about a novelist and his fan and tormentor. " style="max-width:100%; height:auto; border-radius:6px; margin:10px 0;" loading="lazy" /> 
The 2019 movie "Glass" reunited Willis with director Shyamalan, featuring Willis (right, with Jackson, left, and James McAvoy) as a superhuman vigilante." style="max-width:100%; height:auto; border-radius:6px; margin:10px 0;" loading="lazy" /> 
One of Willis' more recent films is the Edward Norton noir crime thriller "Motherless Brooklyn." Stars Willem Dafoe, Willis and Norton attend the premiere at the 2019 New York Film Festival." style="max-width:100%; height:auto; border-radius:6px; margin:10px 0;" loading="lazy" /> 
Willis (right) and Jackson laugh it up together at Comic-Con. " style="max-width:100%; height:auto; border-radius:6px; margin:10px 0;" loading="lazy" /> 
Late in Willis' career, he opted increasingly for big paydays that required only a day or two of filming. Most of these efforts went straight to video. In "Apex" (2021), Willis plays a familiar role, that of an ex-cop imprisoned for a crime he didn't commit. " style="max-width:100%; height:auto; border-radius:6px; margin:10px 0;" loading="lazy" /> 
In "Deadlock" (2021), Willis is a wanted criminal leading a team of mercenaries who seizes an energy plant and holds everyone inside hostage, leaving a retired elite army ranger as the only guy who can save the day." style="max-width:100%; height:auto; border-radius:6px; margin:10px 0;" loading="lazy" /> 
Megan Fox and Willis are FBI agents looking into a Florida serial killer in the cop thriller "Midnight in the Switchgrass" that same year." style="max-width:100%; height:auto; border-radius:6px; margin:10px 0;" loading="lazy" /> 
Willis sat front and center in the hot seat during the Comedy Central Roast of Bruce Willis at the Hollywood Palladium on July 14, 2018, in Los Angeles." style="max-width:100%; height:auto; border-radius:6px; margin:10px 0;" loading="lazy" /> 
Man of the hour! Willis attends the Comedy Central Roast of Bruce Willis on July 14, 2018, in Los Angeles." style="max-width:100%; height:auto; border-radius:6px; margin:10px 0;" loading="lazy" /> 
Willis was booed by famously harsh Philly fanswhile throwing out the first pitch prior to the game between the Milwaukee Brewers and the Philadelphia Phillies at Citizens Bank Park on May 15, 2019, in Philadelphia. " style="max-width:100%; height:auto; border-radius:6px; margin:10px 0;" loading="lazy" /> 
In one of the final red carpets of his career, Willis attends the U.K. premiere of "Glass" on Jan. 9, 2019, in London. In March 2022, Willis' family announced the actor was retiring from acting after being diagnosed with aphasia, a language disorder that affects a person's ability to communicate. In nearly 40 years, Willis starred in more than 100 movies after making his mark in television. While there have been more buff action hereos over the years, few others possess the casual smirk that made every Willis performance a romp. " style="max-width:100%; height:auto; border-radius:6px; margin:10px 0;" loading="lazy" /> 'Moonlighting' to McClane: The roles that made Bruce Willis a legend
In 1991, Willis played a private eye investigating a murder alongside a disgraced ex-football star (Damon Wayans, left) in "The Last Boy Scout." The film's director, Tony Scott, found success with movies such as "Beverly Hills Cop" and "Days of Thunder."
In case you missed:Emma Heming Willis responds to public 'judgment' amid Bruce's dementia
'We're not thinking about care and our care plans'
Bruce Willisthought 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 toPew 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 acare planfor 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. Shehatesthe 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."
A personal story:Emma Heming Willis, Bruce Willis, my dad and me
'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 onFTD, 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:Bruce Willis wife Emma Heming Willis offers update on his illness
