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During 'Emma and Bruce Willis: The Unexpected Journey - A Diane Sawyer Special,' the mom and model opened up about what her family's life looks like more than three years after Bruce's diagnosis.
Bruce Willis' wife Emma Heming Willis is opening up about one of the toughest choices she's made in caring for her husband amid his frontotemporal dementia diagnosis.
"It was one of the hardest decisions that I’ve had to make so far," the 47-year-old shared during Emma and Bruce Willis: The Unexpected Journey - A Diane Sawyer Special, which aired Tuesday. "But I knew, first and foremost, Bruce would want that for our daughters. You know, he would want them to be in a home that was more tailored to their needs, not his needs."
Heming Willis revealed that the Die Hard star, 70, now lives full-time with his care team in a one-story second home not far from the family's main house. She and the couple's daughters -- Mabel, 13, and Evelyn, 11 -- spend "a lot" of time there, often visiting Bruce for breakfast and dinner. Willis also shares daughters Rumer, 37, Scout, 34, and Tallulah, 31, with ex-wife Demi Moore.
The family first announced in March 2022 that Willis would retire from acting after being diagnosed with aphasia, which the Mayo Clinic describes as a language disorder that impacts speech, writing, and comprehension. Nearly a year later, they confirmed his condition had progressed to frontotemporal dementia, also known as FTD, a disease that affects the brain's frontal and temporal lobes, areas tied to personality, behavior, and language.
"For someone who is very talkative and very engaged, he was just a little more quiet. And when the family would get together, he would kind of just melt a little bit," Heming Willis recalled to Diane Sawyer. "It felt a little removed, very cold, not like Bruce, who was very warm and affectionate. To go in the complete opposite of that was alarming and scary."
Dr. Bruce Miller, an FTD expert who appeared in the special (though he does not treat Willis), explained, "This is really the unknown disease. People weren't aware of it really until the 1990s. The research on this really has just begun."
Heming Willis admitted the official diagnosis left her devastated.
"To leave there with no … with nothing, just nothing, with a diagnosis I couldn’t pronounce. I didn't understand what it was," she said. "I was so panicked. And I just remember hearing it and just not hearing anything else. It was like I was free-falling."
Elsewhere in the interview, Heming Willis shared she was met with challenges of her own and "had to be treated for depression," after realizing she couldn't bear the burden alone.
It was her stepdaughter's honest concern that pushed her to seek help.
"I'll never forget when Scout said that to me. And I thought, 'Wow. Okay. I am losing it. I need to really get myself together here,'" Heming Willis recalled.
Emma Heming Willis Gets Candid About Bruce Willis' Decline: 'Alarming' Symptoms Led to Dementia Diagnosis
View StoryReflecting on the journey, she said she had initially tried to soldier on, "thought I had to do it alone," which included lying awake at night ensuring Bruce's safety and "isolating the family away from social gatherings and playdates" to keep things calm for him.
Heming Willis did confirm, however, that Bruce is "in great health overall,” despite his degenerative condition. "It's just his brain that is failing him. 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, a different way."
Expressing gratitude for their small moments together, she added: "I'm grateful. I'm grateful that my husband is still very much here."
Heming Willis' new book, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path, is out September 9.
