Before Bruce Willis was officially diagnosed with frontotemporal dementia, the legendary actor’s wife, Emma Heming Willis, began noticing “alarming” warning signs – including changes to his once “warm” personality, losing interest in things he usually loved and skipping out on family outings.
“For someone who is very talkative and very engaged, he was just a little more quiet,” Emma told Diane Sawyer in a preview clip of the ABC special “Emma & Bruce Willis: The Unexpected Journey,” which aired Tuesday on “Good Morning America.” “When the family would get together, he would kind of just melt a little bit.”
“It felt a little removed, very cold, not like Bruce, who was very warm and affectionate,” she said. “To [go] the complete opposite of that was alarming and scary.”
In March 2022, it was announced that Willis would be “stepping away” from his acting career due to an aphasia diagnosis. It was later announced that he had been diagnosed with frontotemporal dementia, also known as FTD.
BRUCE WILLIS’ WIFE FELT ‘LOST AND ISOLATED’ CARING FOR HIM AFTER DEVASTATING DEMENTIA DIAGNOSIS
FTD is “the result of damage to neurons in the frontal and temporal lobes of the brain,” according to the National Institute on Aging. “Many possible symptoms can result, including unusual behaviors, emotional problems, trouble communicating, difficulty with work, or difficulty with walking.”
“On the day Bruce got his diagnosis, we left the doctor’s office with a pamphlet and a hollow goodbye. No plan, no guidance, no hope, just shock,” she told the crowd during the Women’s Alzheimer’s Movement Forum in Las Vegas in May. “The future we imagined simply vanished, and I was left trying to hold my family together, raise our two young daughters, and care for the man I love while navigating a disease I barely understood.”
“I felt lost, isolated and scared,” Emma said. “What I needed in that moment at that appointment wasn’t just medical information. I needed someone to look me in the eye and say, ‘This feels impossible right now, but you will find your footing. You will survive this and you will grow because of it.'”
These days, said Emma, Bruce is slowly losing his ability to talk.
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“Bruce is still very mobile. Bruce is in really great health overall, you know,” she said. “It’s just his brain that is failing him.”
She continued, “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.”
When Sawyer asked if there are days when she sees him as he used to be, she said, “We get moments. 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. And 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.”
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Emma will release her book,”The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path,” this September.
“The book is the roadmap I wish someone had handed me on the day in 2022,” she said in May. “I wrote it for other caregivers who are desperate for answers, aching for support, and wanting to be seen and wondering how they’re going to make it through.”
“I’ve had access to world-class experts because of who Bruce is, and I know that’s a privilege, so I didn’t want to keep that information to myself… I have a megaphone and resources that others don’t.”
Bruce married Emma at their home in Turks and Caicos in March 2009, and they have two daughters, Mabel and Evelyn. The actor was previously married to Demi Moore for 12 years, and the friendly exes have three daughters together: Rumer, Scout and Tallulah.
