Bruce Willis was diagnosed with frontotemporal dementia in 2022. Since then, Bruce’s family has rallied around him, occasionally sharing family pictures and updates about his condition. Bruce and his wife, Emma Heming Willis, have been together for almost 20 years. They have two daughters, Mabel, 13, and Evelyn, 11. Emma has a new book coming out on September 9, titled, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path. She’s on the cover of People this week, where she talks more about his condition, her feelings of isolation, and their love story.
It didn’t take long for Emma Heming Willis to sense there was something singular about Bruce Willis. Introduced to him by her trainer in 2005, Emma — a flourishing model at the time — remembers Bruce as “so charming, so funny, so down-to-earth and so handsome.”
But stars didn’t align until 2007, when a friend cajoled her into accepting Bruce’s invitation to Turks and Caicos, where he was vacationing with his daughters Rumer, Scout and Tallulah, his ex-wife Demi Moore and her then-husband Ashton Kutcher. “I got to see this other side of Bruce, who was a family man,” Emma tells PEOPLE in this week’s cover story. “On that trip, I ended up falling for him really hard. That was the start of our love story.”
Their romance unfolded with ease: They married in 2009, welcomed daughters Mabel and Evelyn, traveled together to Bruce’s movie sets and built a lively home filled with laughter. “Life was busy… full and fun,” she says. “If the girls were swimming in the pool, he would come home, dive in with his clothes on just to get a laugh. He’s the iconic girl dad.”
But when Bruce was diagnosed with frontotemporal dementia (FTD) in 2022 at age 67, their lives—and dreams for the future—were upended. “Early on, life felt very dark, very one-note of just grief and sadness,” says Emma. As a full-time caregiver, she felt unmoored, isolated and unprepared to navigate Bruce’s progressive illness on her own, much less protect his privacy and parent their two young kids alone.
Emma eventually found a way forward for herself and her family. She sought extensive guidance from experts, found strength in community as one of nearly 12 million people in the U.S. caring for a loved one with dementia, and discovered renewed purpose in caregiver advocacy.
She also discovered a whole new level of connection with Bruce. “I feel like our love story has only grown and developed more,” she says. “It sounds woo-woo but it’s just on a more cellular level. I am so grateful that he is very much here, very much a part of our day-to-day.”
While it’s meant a reimagined dynamic, she sees newfound beauty in their enduring love story. “It has meant so much to be able to meet him where he’s at, to enjoy this time with him,” says Emma, whose new book, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path is a roadmap for caregivers navigating neurodegenerative disease and shines a light on the realities of FTD.
“Bruce is very present in his body, and there is something so lovely and wonderful about that. He’s not thinking about what happened yesterday or what’s happening in the future. He is very grounded in today.”
And although FTD has compromised his speech, Emma cherishes their forever bond forged 18 years ago. “Sometimes, love does not need words. I can just sit there with Bruce, and we look at each other and we laugh and smile and that, to me, is more than anything.”
“Sometimes, love does not need words. I can just sit there with Bruce, and we look at each other and we laugh and smile and that, to me, is more than anything.” Oh, that is just a gut punch. I really like that she has approached it as a “reimagined dynamic” and that their love has grown and developed more. It may not be the love story that they imagined, but it’s still a part of their journey. Emma also revealed that Bruce is no longer living with her and their daughters, but is staying at another home nearby that gives him the “calm and serene atmosphere” that he needs right now.
At one point in the interview, Emma touches upon how FTD is frequently misdiagnosed because it’s not on many doctors’ radar. (Don’t forget that Bruce was originally diagnosed with aphasia.) I hate the circumstances around it, but it’s great that she is raising awareness for something that is notoriously difficult to diagnose, and I truly hope that it makes a difference. And while I obviously do not know much about Bruce IRL, I do think it speaks volumes about him that his ex-wife, current wife, and all of his children get along so well, and that they are all so in sync with how to present their public front. That is a family who protects the people they love.
Alll this detailed coverage about him feels exploitative. Did he give his consent for all of this when he was still well enough? I understand her wanting to raise awareness, but how much of this is making money off of her sick husband since he can no longer work? It just gives me the ick.
I get what you’re saying, but perhaps she needs to control the messaging because he’s such a public figure. Probably best to be direct about what’s going on, to avoid intrusive speculation from the press and paps.
I very strongly disagree. Too many people in this country treat illness as something that has to be hidden away. That attitude is devastating for both the ill person and for the family who is providing care. She is doing a tremendous service. There is no shame in being ill. There is no shame in educating others, advocating for better diagnoses and better treatment options. Caring for someone with dementia is the hardest job I have ever had and I’m pleased that she is not cowered into silence. Caregivers have the right to speak, and as his wife, she has the power and obligation to do what she thinks he would want, and it is obvious that his adult children feel no differently. An entire family thinks that he would have no problem with the family speaking their truth, I’m pretty sure that the general public knows no better.
in general, people with dementia are considered unable to give consent. Emma likely has power of attorney over everything from his medical decisions to the distribution of his assets.
they had many years together before he became incapacitated, so I’d give her the benefit of the doubt here. if it helps anyone to get diagnosed, it’s probably for the good. and the fact that his family relationships seem so solid is a pretty good indication that they’re all on board.
This question was already asked several years ago and Emma as well as Bruce’s older daughters answered it by saying Bruce gave consent and he is comfortable with the public knowing some details about his condition as it progresses.
Keep in mind that she is not sharing every personal detail of his condition. The brutal, declining effects of his condition she has not shared in detail with the public (the nitty gritty as we called it at my hospice agency.)
His overall personal life is still kept private, in my opinion.
The LA Times just did a piece on another couple struggling with FTD. In that case the husband’s symptoms started out in a way that just made him look like a jerk – he turned obnoxious at work, was cold to his wife, started sending explicit texts to other women… The wife didn’t leave, though, and he was eventually diagnosed with FTD. And now she’s his full time caretaker. Makes me think of all the stats on how men are much more likely to leave a spouse going through a serious health issue, while the women stay.
🎯
My sister-in-law D died of FTD. My brother-in-law J (husband’s brother) really went through a lot. It took over 5 years just for her condition to be correctly diagnosed, including going to the Mayo Clinic. FTD is a heart-breaking condition because the person behaves in such uncharacteristic and alarming ways and then just fades away. J was told that people diagnosed with FTD usually died within 7-8 years, but D lasted almost 10 years.
I think Bruce’s entire family has handled his situation as well as could be expected. Unless you have experienced someone with FTD and how it affects the entire family, please don’t criticize how others are handling it.
Emma talked about this with Diane sawyer. That’s how it started with Bruce too. Becoming more detached and colder.
As a physician, I just want to clarify that “aphasia” is not a diagnosis, it’s the name for a symptom (lack of speech fluency). The family might not have been willing to share Willis’s diagnosis (because FTD is really such a catastrophic diagnosis)—or, indeed, doctors might not have initially had a firm diagnosis—but it’s unlikely that “aphasia” was his initial diagnosis.
Thank you for clarifying this!
That’s what I suspected as well. It was like a placeholder diagnosis either because they hadn’t figured out what was causing the aphasia, or they didn’t want to reveal the true diagnosis at the time.
Is it possible that aphasia was a symptom of his, at that time yet to be diagnosed, FTD and it was the only clue they had that something was going on and it was neurologicallly based?
I didn’t remember back when they were only talking about his aphasia.
I think the family has treated him with such respect and dignity as they navigate this. It’s so much better than just hiding him away, pretending he’s fine, claiming he wants to avoid the spotlight or some other excuse. They seem like a genuinely loving and supportive clan and I’m glad that they’re working to reduce the stigma around dementia and the work of caregivers.
As boomers are aging, I think her book will be a great resource to others. This is not a trashy “tell all”. She sounds like a very caring & sweet person. My husband has a neurological condition & hasn’t worked in 6 years, and it is very hard! You have to make household changes that others might not understand. And it has felt very lonely at times. He has dear friends but they are busy with their own lives & don’t fully comprehend how challenging life is for him now. I’m looking forward to reading her book.
As some with a parent who was diagnosed with early on-stage dementia at just 64, I understand so much of what she is feeling and experiencing. My mother was diagnosed in 2018 with Lewy Body Dementia (the same thing Robin Williams was diagnosed with before his death). I am so glad she is talking so openly about her experience. It can help so many people.
I am so sorry.
My father died from it and it as brutal as it could be.
The last two weeks of his life, which is when he was on hospice, was the most peaceful time since onset of his symptoms of LBD. At that point he became bed bound and just slept.
He was at peace at that point, and we were too, knowing that his suffering would soon end.
🕊
Peacefully at rest now
The fact that she romanticizes this so much bothers me. This love story of caring for an ailing man in the prime of her life just seems like a fairy tale. I’m glad she’s taking good care of him and has the money and support system to help her, but it can’t all be joy and peace. Maybe it helps her to only talk about the good, but for many it also helps to know they are not alone as they struggle.
Also, I believe they have two young daughters, who are only 11 & 13 together. She is likely essentially raising them as a single parent at this point too.
Agreed. Enormous wealth must cushion the strain, significantly.
And she isn’t actually taking care of him 24/7. He lives in a separate home with caregivers. That is a luxury 99.99% of people don’t have.
I don’t see why you are bothered at all. This is her story, her journey. She has been very honest about their difficulties and heartbreak. Until I was in the role of caregiver myself, I really could not have understood. My sister and I found tons of ways to laugh through tears. Life must go on and everyone finds a different way through the agony. So please be generous in thought when considering how she explains her approach.
In April, I ended ten years as a caregiver when my dad passed at 94. I took care of my mom first (Alzheimer’s) and then tried to help my dad manage his grief and his own encroaching dementia. Caregiving for me has been a slow-moving train wreck that pretty much took apart my life. I had a great life on the UWS of NYC, a good job in IT, a retirement that I was comfortable with, and that’s all gone now. You make decisions as best you can while navigating the unrelenting stresses of day-to-day caregiving, but you don’t know if you have a year left of caregiving or ten. In addition to watching my parents slip away mentally (which is its own peculiar type of grief) the dreams I had for myself are a distant memory. At 54, I’m trying to figure out what’s next and how to even get back in the workforce. Since we have no safety net here for caregivers, the financial cost can be (and often is) devastating.
I don’t think I can read Emma’s book, but I applaud her for bringing attention to the army of unseen, unpaid, and emotionally spent caregivers. They need every bit of recognition and support they can get.
Special thanks to this site and to the community here for being my morning escape for many years. I’ve been a long-time reader and I’m super grateful to have found this great little corner of the internet so many years ago. Thanks Celebitchy 🙂
@Suffragette
I’ve been down that path, traveling it again now in a somewhat different direction.
If wanted, ((((gentle hugs))))
I just wanted to extend a virtual hug to you, Suffragette. We should absolutely have social safety nets in place for people caring for vulnerable or sick family members, and I am sorry that your life was upended by the lack of those resources. I hope that you are able to find an opportunity that gives you more security, and I wish you peace and comfort.
We hear you. Gentle e-hugs.
@suffragette:
I’m so sorry for what you and ypur loved ones have been though, while also admiring your dedication, strength and courage in caring for their needs.
I’ve been down that brutal path too, while I was DON for a hospice agency.
Same here suffragette. Though my mom is in memory care now. Nearly broke my family down. This site has helped give my mind a break every day and I appreciate all of you (and the writers).
Will take all the virtual hugs! Many thanks 😊💙
I hope your path this time around is full of surprising blessing @ IDLESATCRANKY 💙
As a medical professional, and as someone who has experienced being a caregiver in my personal life, I applaud Emma for bringing to light her experience as a caregiver for someone with FTD. This is a brutal disease, for the person affected and anyone in their life. If her story gives a tiny bit of understanding and relief to others in the same situation, then speak it loud.
I don’t think I’ve ever seen a picture of her before. Am I crazy or does she look a lot like Demi? I guess that’s not so unusual.
I agree with Josephine, and as a caregiver to someone with dementia myself I don’t see her comments as “romanticizing” it at all. In fact too often many family members struggle to see that there is any opportunity for joy with their loved one with dementia–which leads often to family members deciding to shut their loved ones away or otherwise avoid facing the reality entirely. Finding new ways to redefine what love means alongside your loved one I think is essential to treating them with the dignity we would each want if we were facing a neurodegenerative disease ourselves.