Emma Heming Willis, wife to and carer of Bruce Willis, opened up to Diane Sawyer about what her life with the former movie star is like today. Willis was diagnosed with frontotemporal dementia in 2023. The disease affects the frontal and temporal lobes of the brain and causes memory loss, personality changes, and in Willis’s case, aphasia. Willis retired from acting, and now Heming Willis has written a book about her new life, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path. Here’s what she had to say about her life with Bruce Willis, his health, and what it’s like to become your husband’s primary caregiver.
Heming says the first symptom was Willis getting more reserved.
The average age for frontotemporal dementia is 56, much younger than many other neurological conditions. Heming Willis said she noticed something was wrong when Bruno became withdrawn around his family. “For someone who was very talkative and very engaged, he was just a little more quiet,” she says. “And when the family would get together, he would just kind of melt a little bit.” Another sign something was wrong: a childhood stutter reemerged. “He felt a little removed, very cold,” she says. “Not like Bruce.” Another early symptom of the disease, according to experts, is indifference to loved ones.
Physically, Bruce Willis is doing well.
“Bruce is still very mobile. Bruce is in really great health overall. It’s just his brain that is failing him,” Heming Willis says. “The language is going and we’ve learned to adapt. And we have a way of communicating with him, which is just a different way.”
He doesn’t know what is happening to him.
Heming Willis says Bruce Willis never “connected the dots” about his diagnosis and the aphasia he was experiencing. Bruce Miller, a leading expert on frontotemporal dementia, told Diane Sawyer this is common. “The patient is incredibly unaware of what is happening,” he says. “I think the parts of the brain that allow us to suffer and self-reflect are lost very early in frontotemporal dementia.”
Bruno comes back in “moments.”
Heming Willis says the Bruce she knew and loved doesn’t come back for whole days, but she does get glimpses of him “in moments,” especially when he laughs. “He has such a hearty laugh. And, you know, sometimes you’ll see that twinkle in his eye, or that smirk, and, you know, I just get transported,” she told Sawyer, tearing up. “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.”
Related
She sat down with Diane Sawyer to discuss her husband’s life with frontotemporal dementia.
