Emma Heming has had the difficult job of caring for her husband, Bruce Willis, and being a mother to their two young girls, Mabel and Evelyn, ever since the Die Hard star was diagnosed with frontotemporal dementia (FTD) in 2023.
FTD is a progressive brain disease that can affect the personality, behavior and language skills of the patient. The former model revealed how she explained Bruce’s illness to the 14 and 12-year-old girls, who are the youngest of his five daughters.
“When Bruce was diagnosed, the kids knew I was going to be coming home with a name of whatever this might be, and I told them it was frontotemporal dementia, and they made an acronym of Fantastic Turtles Dancing, so that they would be able to remember just the way the letters went,” she recalled on The Bossticks podcast. “From there, I would wait and just wait to see what questions they might have.”
She continued: “You have to be ready to answer those questions that you feel fit for them to hear in an age-appropriate way, but it must be truthful.”
“I have always told my kids that ‘If anything changes, I’m going to let you know,’ so they know that I’m never going to try and sugarcoat this for them.”
Emma added that Mabel and Evelyn trusted that they would be supported and informed amid Bruce’s illness. “I think that they’re doing really well, given the givens,” she said.
Emma, who married Bruce in 2009 after meeting him at their local gym, shared on the podcast that the star still remembered who his loved ones were, unlike other FTD suffered that memory loss. “The one that Bruce has affects language,” she explained. “But there’s another variant that will affect behavior and another one that could affect movement.”
Learn more about Mabel and Evelyn below…
“That’s a different part of the brain,” she added. “So when people say, ‘Oh, does he remember who you are?’ Well, he does because he doesn’t have Alzheimer’s; he has FTD. I think that’s a very common misconception that, when you think of dementia, we think of memory loss.”
“It’s different from Alzheimer’s. And Alzheimer’s is the most common form of dementia, but FTD is the most common form of dementia for people under the age of 60.”
Bruce also shares three daughters with his ex-wife, Demi Moore: Rumer, 37, Scout, 34, and Tallulah, 32. Rumer shared on The Inside Edit podcast that her father’s demeanor had changed since his diagnosis.
“There’s this sweetness,” she said. “He’s always been this macho dude, and now there’s this – fragile is not the right word – but like a tenderness that maybe being Bruce Willis might not have allowed him in a way.”
“[I’m so happy] that I still see a spark of him and he can feel the love that I’m giving and so that feels really nice,” Rumer previously shared on social media. “Yeah, I just feel grateful that I get to go over there with [my daughter] Louetta, and we get to spend time with him, and I get to feel the love that he has for me and that he puts out for me and that I can love him and be with him.”
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