Emma Heming Willis talks about Bruce Willis’ battle with dementia
Emma Heming Willis has spoken out about Bruce Willis’ battle with dementia, nearly three years after his diagnosis.
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LOS ANGELES — Emma Heming Willis is perhaps the most famous caregiver in this country right now. She spoke at length about her husband Bruce Willis’ frontotemporal dementia (FTD) diagnosis and how it twisted, tangled and turned her happy life into something devastating.
But on a recent rainy day in Los Angeles, Hemming Willis’ demeanor was less gloomy than the weather. Her casual black top and jeans convey poise and comfort. Someone who doesn’t care what you think and wants to make the most of the time she (and her husband) has left. For now, her movie star husband is in a stable place. Regardless, the fear of what will happen next remains.
“That’s the fear, right? When is the next shoe coming out? But when it comes, we know we’ll be ready,” she told USA TODAY at the Endwell Summit, a death and dying conference for caregivers, clinicians and grief advocates.
FTD is the name for a group of brain disorders that occur due to decreased function of the frontal and/or temporal lobes. FTD affects approximately 50,000 to 60,000 people in the United States and is an incurable disease that can cause personality changes and speech impairment. Live for about 7 to 13 years after symptoms start. Willis was diagnosed in 2023.
Hemming Willis, 47, has a care team in place for him and has learned so much during his caregiving journey that he wrote a book about it, An Unexpected Journey. She is as prepared as possible for the difficult moments ahead. “It doesn’t make it any less painful or harder to walk,” she says. “But for now, we are on stable ground.”
“We don’t think about care or care plans.”
Bruce Willis thought he would live forever. They never talked about end-of-life care. She didn’t know about it until she needed it. According to Pew Research, only 32% of American adults have a will detailing what happens to their assets and possessions after they die, and just 31% have a living will or advance health care directive in case they become medically incapacitated.
“As a society, we don’t think about these things,” says Hemming Willis. “We don’t think about care and care plans and we don’t think about death. But we really need to do that and we shouldn’t look at death in such a bleak light.”
Her husband’s illness woke her up. “My care plan is pretty much the same and is in place for my daughters (daughters Mabel, 13, and Evelyn, 11), so they don’t have to make all the decisions or understand everything,” she says. “I want to make it a little bit easier for them.” She knows her daughters also worry about their mother getting sick. “I just let them know I’m healthy. I’m taking care of myself. I try to ease their worries as much as I can.”
People think of caregiving, death, and dying as depressing and debilitating experiences. But there are layers to it. Hemming Willis still jokes, smiles, watches TV, and takes care of himself. she dislike The term self-care is a sentiment that resonates with many caregivers, who like to frame it as an attempt to take time for themselves.
“It’s important to me to find moments when I want to make time,” she says. “I love to go hiking. I love being outside in nature, connecting with friends, window shopping with my mom. I mean, these little simple things are actually very comforting and nourishing to my soul.”
“We’re not there yet.”
Did Hemming Willis try to prepare his children for Bruce’s death?
“We’re not there yet,” she says. “They’re educated about FTD. If they’re asked, I think I’ll teach them, but I think they’re more present-focused. That’s where their questions are primarily. But if they’re asked, I’ll always be honest and honest.”
When Hemming Willis thinks about life after death, her brain remembers her mother’s friend Peg, who recently passed away. Peg’s husband had FTD. Hemming Willis first heard about it decades ago. Peg’s death erased those memories. As Hemming Willis’ mother mourns Peg, Hemming Willis tries to comfort her. Peg’s husband is there, waiting for her on the other side, she said to herself. He is healthy and in a happy place.
We can all only hope for the same thing.
