In her most candid interview yet, Emma Heming Willis opens her heart to talk as never before about the reality of living with someone who has frontotemporal dementia (FTD), the condition affecting her husband, the actor Bruce Willis.
Emma recounts how she managed to transform the brutal shock of a diagnosis that made her feel as though her world was crumbling around her into an inspiring life mission, writing her book, The Unexpected Journey, to help caregivers of loved ones with dementia
It is a unique account where pain coexists with daily laughter, sustained by the unbreakable bond of the couple’s blended family. Alongside their children, Mabel, 14, and Evelyn, 12, Bruce's eldest daughters – Rumer, 38, Scout, 35, and Tallulah, 32 – and his former wife, Demi Moore, have all pulled together, guided by a firm resolve to cherish every moment of happiness and celebrate the present amid what experts call "the long goodbye".
© Craig SalmonEmma, you've mentioned that writing this book was a painful but necessary process. Was there any particular chapter or memory that was difficult to put into words?
“The hardest part of writing my book was the first chapter, where I share our love story: how Bruce and I met, who he was at his core and the rock-solid foundation we built together. With the daily reality of his illness, I admit I’d forgotten all of that.
“It's just too painful to look back at that time that was so full of fun, laughter and tremendous joy. It hurts to think back to that time. Writing that first chapter forced me to remember and to dive deeply into the details of why I fell madly in love with my husband.”
You talk very openly about guilt: feeling guilty for going for a walk, smiling or even wanting a moment of peace…
“The reality is that guilt is something I still struggle with daily. When you are a care partner and you have to navigate a situation like this, it's practically impossible not to feel guilty. But I've learned that I can't allow that feeling to consume me, because it's a huge waste of time and energy.”
© Getty Images For Comedy CentralYou highlight the vital importance of building a "safety net". For you, that net includes Demi Moore and Bruce's eldest daughters. How do you manage the past histories to make a blended family work?
“The key lies in understanding that I am part of a family where every single one of us has decided to show up for Bruce, always looking for a way that is healthy for everyone. Each one of us has their own relationship with him that's unique and special.
“What has been truly beautiful to see throughout this process is how we all pour our hearts into supporting him – how deeply we love him, while completely respecting the way each person chooses to express that love. I think the balance we've found is simply a reflection of who Bruce is at his core; it’s the result of all the love and support he planted over the years coming right back to him now.”
Daily grief
Frontotemporal dementia alters personality and you touch on the subject of learning to love the person you have in front of you, instead of the memories of who they used to be. How do you grieve someone who is still physically present?
“It is extremely difficult and painful. It's natural, we all want our loved ones to be healthy, full of life and being the person they always were. But FTD is a devastating illness that steals things from you very slowly. So the reality is that you find yourself constantly in a state of grief.”
Your daughters are growing up in a home where this illness is a daily reality. How do you balance the need to be honest with them without compromising the joy of their adolescence?
“It’s a really delicate balance to strike. Guiding them through something like this – through any serious illness, really – is an enormous challenge. But despite how tough things get, I always try to remind myself that it could be so much worse.
“At the end of the day, what our daughters are experiencing and witnessing at home every single day is a masterclass in pure love. They see how much we support their dad, how deeply we love him and how we stand by him through thick and thin. It’s wonderful for them to see everyone rallying together: family, friends... absolutely everyone has formed a protective ring around him.
“I think there’s something genuinely beautiful about them growing up with that sense of unity. Yes, it’s heartbreakingly hard, but my daughters are learning the true meaning of loyalty, devotion and unconditional love.”
© ©EMMAHEMINGWILLISHas the way your daughters see you changed as they’ve watched you look after Bruce? Do you feel like they see you as unbreakable now?
“Not at all! My daughters have seen me be strong, of course, but they've also seen me broken on the floor. At the end of the day, I'm only human. I think they're very aware that I'm doing the best I can. I've never been through this before, I'm learning everything in real time.”
The long goodbye
Seeing all of Bruce's children united is a beautiful picture of resilience. What has their maturity taught you throughout all of this?
“It really comes down to seeing the way his daughters are showing up for him right now. Each of them has built her own unique bond with him. It's incredible, because all five are completely different, but they share the same foundation: Bruce was always an incredibly solid, steadfast presence in their lives.”
FTD is often confused with other forms of dementia. If you could debunk just one myth you’ve read about your husband's current state, which would it be?
“There are so many that the truth is I've already stopped following the news! But if I had to choose one, I would point out exactly what you've just mentioned: the immense lack of information that exists around dementia. We are talking about a disease that's extremely common; it is estimated that by the year 2050 cases are going to triple. And, yet, misunderstandings continue because it has always been surrounded by a lot of shame and stigmas.”
That lack of knowledge is especially noticeable in the questions you receive about Bruce's day-to-day life…
“It’s really eye-opening to see that one of the very first questions almost everyone asks me is: ‘Does Bruce still remember you?’ And my answer is always a resounding yes. Bruce doesn’t have Alzheimer’s; he has frontotemporal dementia, which affects a completely different part of the brain.
“That’s why what I’d love to see, once and for all, is a shift in the media. I wish they’d inform themselves about the different types of dementia and learn to report on them accurately – educating the public rather than feeding fear and stigma.”
© ©EMMAHEMINGWILLISYou say that laughter still has a place in your home. What does the sense of humour look like in the Heming Willis household these days?
“We’ve always been a family that finds joy and fun in the littlest things, and that philosophy is precisely what has served us best as we’ve navigated this path. If I had to think about what those small moments actually are... well, our daughters are still young and say the most hilarious things. And Bruce is really funny too – he still says things that make us laugh.”
An absolute myth
Maintaining that connection with him must be your greatest comfort…
“It is. There is something I want to make crystal clear: we are never laughing at him, we are always laughing with him. We’ve managed to protect that sense of joy and fun simply because it’s still very much there.
© @EMMAHEMINGWILLIS“Just because someone receives a dementia diagnosis – in whatever form – it doesn’t mean their life is over or that the lights have been turned off completely. There’s still so much fun to be had, so much laughter, and so much connection waiting for you. There is an entire world of love that remains completely intact.
“Painting a picture that dementia is relentless, unmitigated misery every single minute of the day is an absolute myth. We have so many everyday moments that are still hilarious to us, and, thankfully, we’re still laughing.”
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