Emma Heming Willis is giving more insight than ever before into her husband Bruce Willis' battle with frontotemporal dementia (FTD). Since the Die Hard actor was diagnosed with aphasia in 2022, which was later amended to an FTD diagnosis the following year, the MakeTime Wellness founder has been a vocal, steadfast advocate for those battling the devastating illness and those who are caretakers for them. Now, ahead of the September 9 release of her book, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path, all about it, she's speaking to Diane Sawyer about what her husband's battle has really looked like for their family.
In a preview of the ABC special, Emma & Bruce Willis: The Unexpected Journey, which will air Tuesday, August 26 at 8pm EST, Emma first explained: "For someone who was very talkative and engaged. He was just a little more quiet and when the family got together, he would melt," noting: "It felt a little removed, very cold, not like Bruce, who was very warm and affectionate," and that to go "into the complete opposite of that was alarming and scary."
© Pacific Press/LightRocket via GeOf leaving the doctor's office with not much more than the diagnosis and a pamphlet on it, Emma said: "To leave there with nothing, just nothing, with a diagnosis I couldn't pronounce, I didn't know what it was," and recalled: "I was so panicked. I remember hearing it and then just nothing else. It was like I was free falling."
As for Bruce, Emma isn't sure he "ever really connected the dots" to understand his diagnosis. Still, she noted: "Bruce is still very mobile. Bruce is in really great health overall, you know," but that "the language is going, and, you know, we've learned to adapt … and we have a way of communicating with him, which is just a ... different way." She added: "It's just his brain that is failing him."
© InstagramThrough it all however, Emma also maintained the family still sees glimmers of Bruce's personality and the "twinkle in his eye." Though they don't get "days" of it, "they get "moments," she shared: "It's his laugh, right? Like, he has such, like, a hearty laugh. And, you know, sometimes you'll see that twinkle in his eye, or that smirk, and, you know, I just get, like, transported." Still, she did add: "It's just hard to see, because as quickly as those moments appear, then it goes. It's hard. But I'm grateful. I'm grateful that my husband is still very much here."
Emma, 47, and Bruce, 70, started dating in 2007 after meeting at the gym, and tied the knot in 2009. They share two daughters, Mabel Ray, 13, and Evelyn Penn, 11, plus he is also a dad to daughters Rumer, 37, Scout, 34, and Tallulah, 31, who he shares with ex-wife Demi Moore, to whom he was married from 1987 to 2000, and with whom he remains close friends to this day.
© InstagramEmma has also previously opened up about how she has spoken to Mabel and Evelyn about Bruce's health, telling Town & Country last year: "I'm trying to find that balance between the grief and the sadness that I feel, which can just crack open at any given moment, and finding joy." And though it was a heartbreaking diagnosis to receive, she emphasized: "This disease is misdiagnosed, it's missed, it's misunderstood, so finally getting to a diagnosis was key so that I could learn what frontotemporal dementia is and I could educate our children."
© Getty Images"They've grown up with Bruce declining over the years. I'm not trying to shield them from it," she added, and explained: "What I learned from our therapist was that if children ask questions, they're ready to know the answer. If we could see that Bruce was struggling, I would address it with the kids so they could understand."
