Emma Heming Willis isn't afraid to speak candidly about the difficulties of her husband Bruce Willis' dementia diagnosis, even with their own young daughters.
Since the Die Hard actor was first diagnosed with aphasia, and later frontotemporal dementia, some years ago, the Make Time Wellness founder has become a steadfast advocate for those battling the disease, as well as those who are their caregivers.
The pair have been married since 2009, and share two young daughters, Mabel Rae, 12, and Evelyn Penn, ten.
Speaking with veteran reporter Katie Couric for Town & Country, Emma opened up about how she has been coping the last couple of years, and how she has approached explaining Bruce's condition to their daughters.
"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," she said, and though it was a heartbreaking diagnosis to receive, she noted: "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."
"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."
"But this disease is chronic, progressive, and terminal. There is no cure," she further shared, noting that "obviously, I don't like to speak about the terminal side of this with them, nor have they asked," however, "they know that Daddy's not going to get better."
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She continued: "There is no treatment, which is why I'm out there raising awareness, so that they can see that we have some agency in this. I'm not going to allow FTD to take our whole family down," and emphasized: "Bruce wouldn't want that. They're going to see me fight for our family, have some hope, and help the next family out there."
Still, she reflected: "We had so many plans, so many beautiful things we wanted to do with our girls, so many things that we wanted to experience together," though maintained: "This is not the opportunity that I would want, but it's the opportunity that's been presented."
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"We've been able to raise awareness on a global scale, and they could see the reach and impact that their father has. That's a beautiful thing."
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Emma has also had the support of her blended family, which includes Bruce's ex-wife Demi Moore, and their three daughters, Rumer, 36, Scout, 32, and Tallulah, 30, all of whom Emma is very close to.
"The family respects the way I'm looking after him; they really support me. If I need to vent, if I need to cry, if I need to rage — because all of that can happen and it's okay to have those feelings — they are always there to listen. I'm so thankful that we are this blended family. They're very supportive, very loving, and very helpful, and a lot of people don't have that," she shared.