Bruce Willis and Emma Heming Willis Built a Love and Life Together. Then, She Says, Everything Came Apart.

By the time she understood something was happening, that part of her life was already over.

Emma Heming Willis did not yet know that her husband had frontotemporal dementia. The disease, known as FTD, affects the frontal and temporal lobes of the brain, which control a person’s language and behavior. How they perceive the world and exist within it. Their personality. These sections of Bruce Willis’s brain—the sections that had made him an international movie star and, much more crucially for Emma, a protective partner and exuberant father who could find fun anywhere—were dying.

What Emma knew was that Bruce had changed. At first, she thought maybe it was just the kind of dwindling that happens in a long-term relationship. Eventually, she became alarmed. Emma remembers this mystery that was foisted upon her: “What is going on? This is not the person that I married. Something is just so off. And I just couldn’t figure it out.”

Emma, 49, is sitting in her friend Franne Golde’s Beverly Hills backyard as she recounts these events. It’s a hot July day two months before the release of her book, The Unexpected Journey, and Emma is impeccable in jeans, a striped Xirena shirt, and Oliver Peoples bifocals she’s still getting used to—she tripped on Golde’s front stairs. The former model has the kind of posture that allows her to appear erect even when she leans onto a pillow with her chin resting on her left hand, which bears a textured gold band—a gift from Bruce for their fifth anniversary—in place of her engagement and wedding rings. Golde keeps coming out to refill a pitcher of what she calls cranberry spritzer, a nonalcoholic secret recipe that appears to be cranberry juice and seltzer.

She doesn’t say it, but Golde is clearly also checking on her friend throughout the interview—in 2022, her own husband, Paul, a musician, died from complications related to early-onset Alzheimer’s, a more common form of dementia that impacts memory. Golde was connected to Emma in 2021 by their mutual friend Robert Kraft. (Not the New England Patriots owner but a record producer and songwriter Bruce met at a show in New York in 1980 during his bartending years. Bruce slept on Kraft’s couch the night before his audition for Moonlighting.)

Before she was able to get the horrible answer to the question of what was going on with Bruce, Emma was worried Bruce was becoming a person she no longer wanted to be married to after more than a decade, or that maybe he just didn’t love her anymore. “I felt like my marriage was crumbling,” Emma says. She considered divorce. Life with Bruce—their “romantic, beautiful story”—had been a relief, a break from the effort and pressure of all that happened before she met him.

The whole world knows about Bruce Willis. It knows far less about the woman who has become his caretaker, and in doing so, become a voice for the impact of something that will eventually affect us all: the inevitable time when we can no longer care for ourselves.

After Emma’s parents broke up when she was seven, there were times that she did not see her father for years. Emma’s mother, Zorina, who had been a stay-at-home mom, now worked three jobs, including cleaning houses and handing out samples in the grocery store. When Emma was in elementary school, they first followed family to Tottenham, a neighborhood in London that was too rough for Emma to walk through unaccompanied, then moved to Costa Mesa, California. Zorina eventually became an agent; then, when Emma dropped out of high school to model, she became her daughter’s manager. “I wasn’t going to grow up to be a doctor or lawyer,” Emma says, but she did realize she was profitably beautiful. And she saw a way to take care of her mother. “I wanted to help her so she didn’t have to feel like she was in this rat race of just trying to support us,” Emma says. “Modeling and doing little jobs here and there where you would get a couple hundred bucks was very helpful for us in those early days.”

Perhaps because her mother was always around for much of her career, Emma realizes now, she didn’t have “these horror stories—I think I’m one of the lucky ones that came out unscathed.” Emma’s couple-hundred-buck editorial shoots begat lucrative catalog gigs, and by the time she met Bruce at the gym in 2005, Emma was working all over the world, ultimately making enough money to buy multiple properties, including the Chelsea apartment where Zorina stayed when Emma and Bruce lived in New York.

At the time, Emma was engaged to someone else. Bruce, however, told his personal trainer, and his close friend and “right-hand man” Stephen Eads, “I’m going to marry that girl one day.”

This is the part where everything changes for Emma the first time. It’s also the part that she can’t quite recall, except in seemingly unbidden moments that burble up. That Bruce’s drink was vodka soda with “no fruit,” because he’d seen so many unclean hands handling lemons and limes in his bartending years. That men—straight men, gay men, whoever men—would seek Bruce out on the street to high-five him. That Bruce had a little crush on Diane Sawyer, so every time he stopped by GMA to promote something, Emma would show up.

Bruce and Emma’s actual relationship eludes her. “What was our love story? How did we fall in love?” she says, trying to summon what it was like when she was the happiest. “It is so hard right now for me to tap into that time of our life, because I’m so wrapped up in what today is and what it looks like,” Emma says. “I hear that from a lot of caregivers too—that it’s hard for them to remember. I’m so happy I’m able to talk to other caregivers now, to know that I’m not crazy, that that is a normal thing.”

Emma has lost the ability to play “remember when?” with the only other person who knows those early private moments. “It’s only Bruce and I that can be able to relive that and talk about that, or even remember that,” she says. “I can’t talk to anyone else about that.”

Other people love still telling the stories. Ali Kavoussi was a modeling agent (now managing partner at The Lions Management) Zorina insisted Emma should be friends with, who has now been her self-described “gay bestie” for a quarter century. He was with Emma when Bruce started contacting her regularly after they first met. “It’s not out of the norm that a model dates a celebrity,” Kavoussi says. “But there was something about Bruce’s messages that were just so humble and sweet and funny.”

“I think he was, like, love-bombing me,” Emma says, laughing. “And I was like, I’ll take it. This is great. Now we know that’s not really what we should be falling for, but I totally fell for it. I loved it.”

Kavoussi encouraged Emma to stop worrying and love the bomb. And when Bruce invited Emma to his compound at Parrot Cay in Turks and Caicos to celebrate New Year’s Eve in 2007, Emma went—with Kavoussi as chaperone. “He met us at the dock,” Kavoussi says of Bruce. “He made us feel so comfortable—it’s kind of scary going into what we were going into!” Bruce’s three daughters from his marriage to Demi Moore were there, as were Moore and her then husband, Ashton Kutcher. Emma and Kavoussi were told to put on bathing suits and head to a party at Donna Karan’s house next door. Over the trip, Bruce kept asking the chef to make Emma and Kavoussi fried chicken so they had enough to eat. When they went out on the water that first day, Bruce repeated his mantra to Kavoussi: “I’m gonna marry her.”

Two years later, he did. It was a small wedding at Parrot Cay—Moore, Kutcher, and the kids, Zorina, Kavoussi, Eads, Kraft and his wife, and two other friends of Emma’s with their spouses. Kraft and Kutcher were dispatched by golf cart to pick up Keith Richards, then still in his Stoli and Sunkist era, to play during the sunset ceremony. “It was super romantic,” Kraft says. “He had found a soulmate. She had found the guy that was going to save the world.”

Emma says she doesn’t know what made Bruce know instantly that he wanted to marry her. He can’t tell her now—Emma says Bruce’s condition takes away the ability to “communicate properly with words,” though she declined to discuss the specifics of his present state. As Kraft says, their partnership transcends the verbal. “We connected so easily,” Emma says. “It was so effortless.”

With Bruce, she felt safe from the catastrophes she is prone to imagine. “I’m a very fear-based person,” Emma says. The day before our interview, she got her first-ever iron IV because she was slightly deficient, and the nurse mentioned there’s a very low chance of a very rare allergy to something in the IV solution, which they’d only seen once in 12 years. Emma became convinced she was going to succumb to this affliction and pulled out her phone to consult ChatGPT. “I go to worst-case scenario,” Emma says. “That is how insane my brain works.” (What actually wound up happening to her family had never occurred to Emma to perseverate about.)

Bruce lived on the opposite pole, always “very in the moment,” Emma says. “I don’t remember really hearing about his stress or anything that he was worried about. That just wasn’t Bruce. He’d hear about my shit all day long. He’d be like, ‘Chill out. It’s going to be okay. What are you worried about? Everything’s fine.’ ”

“He’s always made decisions,” Emma says of the security and stability of Bruce, whom she usually refers to in the present tense. He’s still here. “He knows what he wants and he knows what he doesn’t want,” Emma says. “He is an alpha male.” Then she slips into the past of that reality: “I loved it.”

There was a liminal time between the known unknown and the wretched known known, as they tried to figure out what was wrong. Even now, Emma still isn’t sure when all of this started, which makes the timeline murky. But by 2020, she was sufficiently alarmed that she’d confided in Kraft, who had also been wondering what was going on with his friend. “I listened,” he says. “I was optimistic that everything was temporary, was fleeting. And maybe that was just the Pollyanna [in me].”

Because FTD is rare (with 50,000 to 60,000 cases in the US, though that is likely an undercount) and those with the disease are often younger than others with more prevalent forms of dementia, people don’t associate its symptoms with any type of brain degeneration. Susan Dickinson, CEO of the Association for Frontotemporal Degeneration, says that expression of FTD can sometimes seem like rude or antisocial behavior—stealing a pack of gum at the store or telling someone their dress is ugly. Doctors often misdiagnose the disease as bipolar disorder or recommend couples counseling. But everyone’s disease manifests differently. Only Emma was with Bruce all the time, seeing things that couldn’t be gleaned in 30 minutes by someone who didn’t know him so intimately. Because Bruce didn’t feel like anything was wrong, she eventually had to go over his head to his doctor.

“Are you kidding?” Emma says when I ask her if Bruce would have been okay with that before he developed FTD. “No, it’s my husband. No. He knows what’s what. He makes the decisions. He’s the one.”

Besides Kraft, Golde, Bruce’s doctors, and the family, Emma kept everyone away, desperately trying to protect her very famous husband’s privacy—something she now recognizes might have been her own stigma around a disease she had never really thought about.

But when she was alone, Emma’s life was “derailed.” She had no idea what was going to happen next. She was trying to parent their young daughters, Mabel, now 13, and Evelyn, 11, while simultaneously keeping the house calm and quiet for Bruce. Emma was doing everything herself: trying treatments, making appointments, grasping for any kind of problem Bruce’s symptoms could be attributed to that might have an answer. She wished he would be diagnosed with a benign brain tumor. It is the kind of hope one has only when things are well and truly fucked, but a possibility that might mean this could be reversed, and things could go back to how they were. Early on, Emma was also afraid to share what was happening with anyone—it felt like that would make it real.

“I was very angry, very upset, very sad,” Emma says. “It was really hard for me to just separate what I was pissed at and who I was pissed at. I just wasn’t in a good state of mind. And it wasn’t good for Bruce, it wasn’t good for our children, it wasn’t good for anyone—especially not me.”

In Golde, Emma found someone who understood the pressure of isolation—Golde’s (also alpha) husband had initially made her promise not to tell anyone about his dementia, which became increasingly personally taxing as well as difficult to hide when his behavior became more noticeably aberrant to friends. Golde told Emma that, from surviving that time, she learned “just because one person gets the diagnosis doesn’t mean both people have to die.”

Bruce would not be involved with his own coming-out process: He and Emma did not yet know this, but the part of his brain that controls self-awareness was deteriorating. Bruce will never understand what happened to his brain.

In March 2022, after doctors recognized Bruce’s aphasia—a difficulty with communicating and processing language—his family put out a statement. “To Bruce’s amazing supporters, as a family we wanted to share that our beloved Bruce has been experiencing some health issues and has recently been diagnosed with aphasia, which is impacting his cognitive abilities,” read the post, signed by Emma, Moore, and their daughters. “As a result of this and with much consideration Bruce is stepping away from the career that has meant so much to him.”

People criticized the decision to have “let” Bruce continue making movies until that point, which he had done in those last few years with the aid of an earpiece feeding him dialogue. Filming had been Bruce’s decision, Emma says, and one unimpeded by any diagnosis. “When someone wants to work,” she asks, “how do you stop someone from working?”

With everything she knows now, Emma is glad Bruce kept acting. “He loved what he did,” she says. “I’m happy that he was able to do it for as long as he was able to do it.” Bruce could still hold a movie with a glare (or smirk) and stop-you-dead, barely-matters-what-the-words-are Bruce Willis one-liners. This ability to find what Emma calls “cracks of light”—another is the fact that she and Bruce never argue anymore—has been hard-won.

The moment that still traumatizes her today is when Bruce’s doctor finally informed them, in November 2022, that Bruce had FTD. “There’s nothing we can do,” they were told. He handed Emma a pamphlet and told her to check in in a few months.

What was Emma supposed to do with that? There was, and is, no cure, and Bruce’s disease was too advanced for him to enter clinical trials. Though the doctor couldn’t tell Emma what would happen next, she never stopped asking. She says the doctor didn’t suggest any resources to learn more or experts to consult on how she could make their lives better. The doctor didn’t recommend Emma seek mental health care or join a support group or get caregiving assistance. He had no guidance about how to stay sane enough to take care of this new iteration of her family.

How do we do this? Emma thought. How do we protect Bruce? How do we protect our family? How do I protect our young girls in this? “It was like the worst of the worst. It was really a terrible time. I didn’t know that you can ask for help. There’s so much guilt when you’re thinking that No, I have to. This is my duty. I must.”

The doctor certainly didn’t tell Emma what it would mean to watch a globally famous icon of everyman virility become, as Golde says she experienced with her own husband, “more and more childlike. So it’s like instead of having your husband, it just keeps declining.”

“It doesn’t matter that Bruce is Bruce Willis,” Emma says. “It’s just happening to a real human being. And we are having a real experience in this—I am a caregiver as well as raising young children in this.”

As Emma was losing the ability to talk with her husband, she was beginning to use her voice publicly. “Bruce is able to really highlight it and be able to shine a light on the places that are dark. Dementia is so common, and everyone is talking about it in hushed tones. I didn’t want that anymore, especially for our daughters.” She and the family announced Bruce’s FTD diagnosis on the AFTD website in February 2023.

Some early articles seemed to honestly misunderstand Bruce’s disease, reporting that his aphasia had progressed into FTD when it was actually a symptom. This may have created the impression that things were declining faster than they were and opened the door to more misinformation. “There was an article I remember that came out about Bruce that he has no more joy in his life, or this is his last Christmas,” Emma says. She was tempted to try and correct the bad-faith record before her youngest stepdaughter, Tallulah, told her it was a waste of time. So Emma decided to focus on people who could actually be reached. In the years since the AFTD announcement, traffic has tripled on the organization’s website as Emma became involved in FTD advocacy work. Last year, 25 states officially recognized FTD Awareness Week; this year, a first-of-its-kind FTD bill passed the New York State legislature that requires medical professionals to report every FTD diagnosis to a new registry of the disease, which is the most common form of dementia for people under 60. Emma went to the New York Capitol to promote the legislation, and she is starting to advocate for a similar law in California.

Many publishers asked Emma to do a tell-all. “I’m not doing that,” she said. She frankly didn’t know if she could write any book. Then around Christmas 2023, Maria Shriver, who runs the Penguin Life imprint The Open Field, reached out about a pitch she’d seen from Emma’s literary agents at CAA, unbeknownst to Emma. Emma was clear about what she would and would not say. “This is where I’m comfortable. This is where I’m not comfortable,” she told Shriver, who said, “Do what you want. I want your book. I want to do this with you.” Emma researched and wrote all of The Unexpected Journey in six months with cowriter Michele Bender, with whom she now texts every day. The book uses Emma’s story as a bridge to advice from the many experts she repeatedly stresses she is “blessed” to have the resources to access. It presents dense medical information in a legible way and features advice on everything from what not to do around people with FTD (wear black, because the person can process the darkness as a hole and think your head is floating) to specific language to use for children, well-meaning but annoying friends, and people who say “Let me know if you ever need anything.” (Emma does! She has a list to give you if you ask!)

One thing Emma’s book does not cover in detail is the inevitable conclusion. The publisher asked about it, Bender says, but “Emma’s not there, so you can’t even wrap your brain around it.” Everything in the book, Bender says, “was rooted in her experience. So if she didn’t have that experience, we weren’t going to put it in.” Emma does write that she’s learned the average life expectancy for people with FTD is 7 to 13 years after symptoms begin to develop.

Emma specifically alludes to that future only in what it might mean for research; she supports families donating their loved ones’ brains to science in pursuit of an eventual cure. When I asked if she felt comfortable with brain donation when the subject was initially broached, she says, “It’s a lot to take in. It was a lot to learn, but I feel like I’m happy that I did.” Emma acknowledges the obvious: “I mean, because you’re talking about brain donation, you’re also talking about it after the person is gone. And that’s just a hard pill to swallow.”

“When the time comes or whenever she asks me anything or she needs my help or support, I’m there,” Golde says. “But we haven’t gone down that road of, ‘What about when he is gone?’ That’s why they call it the long goodbye: In a lot of ways, he is gone, just like my husband was gone. It’s like he’s there, but he’s not the man I married. For Emma, this is a whole different Bruce than the man she married.”

Which means Emma is now Bruce’s caregiver—though hiring and overseeing a team of professionals who take care of many of the medical responsibilities she used to handle alone has allowed Emma to be “his wife again.” I ask what it’s like to be Bruce’s wife without him being able to be her husband.

“It doesn’t even feel like this ‘husband and wife’ thing,” Emma says haltingly, the muddle of putting a name to the love within this horror momentarily breaking her steadiness. “We’re almost past that. I don’t know what you call this, but it’s something else. I just feel very connected to him, and I don’t know what that label would be.”

“It’s just deeper,” she concludes, finding the words. “He’s my person.”

Emma has secured a home near their own where Bruce lives with professional care. Now Mabel and Evelyn can make noise and have friends over at the main house and be kids. (They, of course, also spend time with their father.) “Bruce was always wanting them to have fun and have big lives, and he just wants them laughing,” Emma says. And she wanted to give everyone in her family a space where they can be as comfortable as possible, including Bruce.

What about herself, though? “There’s plenty of things that I try and do for myself, but I am always thinking about Bruce,” Emma says. “He’s never off my mind. Because of that, I think it’s just easy for me to remain in just the sadness and the grief and just all of it.”

“Bruce has his own way of communicating to us that no one else would be able to understand,” Emma says, finding a crack of light. He knows who she is. They hold hands and smile at each other. They cuddle and watch TV. They just exist.

“This is not what I would want for him,” Emma says. “This is not what he would want for him. No one would want this for them.” But, she says, Bruce is still in the moment. He’s still as present as when she first met him, just with everything else stripped away.

“I can sit there and just all-encompassingly love him,” Emma says. “Who he is today.”

More Great Stories From Vanity Fair

• Remembering Giorgio Armani

• See All the Fashion, Outfits & Looks From the 2025 Venice Film Festival Red Carpet

• The Venice Film Festival’s Most Fashionable Entrances Ever

• Behind Bruce Springsteen’s “Anti-biopic”

• Prince William and Kate Middleton’s Real Estate Portfolio: A Guide

• The 25 Best Movies on Netflix to Watch This September

• How a Death Row Murderer Exposed One of America’s Most Prolific Serial Killers (Part 1)

• How a Death Row Murderer Exposed One of America’s Most Prolific Serial Killers (Part 2)

• Zen and the Art of Being Jennifer Aniston

• From the Archive: The Armani Mystique

The post Bruce Willis and Emma Heming Willis Built a Love and Life Together. Then, She Says, Everything Came Apart. appeared first on Vanity Fair.