It was the return of Bruce Willis’s childhood stutter that gave his wife Emma Heming Willis her first hint that something was wrong.
“Never in my wildest dreams did I realize that was a symptom,” she told an audience in Toronto on Tuesday.
Bruce Willis, 70, had long since overcome the speech impediment that once saw him tagged with the mocking schoolyard nickname “Buck Buck,” in 1960s New Jersey.
But this returning stutter, which coincided with other communication problems in his late sixties, was a sign of the progressive aphasia, or loss of language, that would later be diagnosed as a form of dementia.
In 2022, Willis announced his retirement after a singular Hollywood career as a classically hunky leading man and top tier action star, from Moonlighting through Die Hard, Pulp Fiction and The Sixth Sense. Soon after, he was formally diagnosed with frontotemporal dementia, the most common type of early onset dementia.
It was such a life-changing moment for his wife, as well as for Willis, that she refers to it as their diagnosis, a terrible new knowledge that put an unwieldy scientific name on the constellation of cognitive symptoms that have slowly robbed Willis of his language and his independence.
“I left with a diagnosis I didn’t understand. I couldn’t pronounce it,” Heming Willis said. She had no resources, no hope, just a clinical acronym and a follow-up appointment. “Early on it was very lonely. I carried a lot of grief. I continue to.”
In the few years since, Heming Willis, 47, has fashioned for herself a public advocacy mission as a caregiver to an action hero, and an inspiration to other people caring for loved ones with dementia, Alzheimer’s and other progressive brain diseases.
It is a hard job to take on. Heming Willis has said it has been particularly hard recently to see backlash to the decision to move Willis into a nearby second family home in Los Angeles, where he lives with a full-time team of support workers.
Heming Willis has two young daughters with Willis, Mabel, 13, and Evelyn, 11, whose experience of their father’s disease began in their childhood and is lasting into their adolescence. Now, the children visit him frequently at the second home, for breakfast and dinner, but the arrangement allows them to have playdates and sleepovers at their own house, to keep things as normal as possible.
Heming Willis said she knows Willis wants their children to live in a home that is set up for what they need, not just for him.
Heming Willis grew up in California, the only child to a single mother after her parents divorced when she was young. She and her mother moved to England, where she began a modelling career that eventually saw her return to New York as a successful commercial model. She married Willis in 2009.
She recently published a memoir focused on her role as what she prefers to call a “care partner.” It is called The Unexpected Journey, and she describes it as the book she would have liked to read that day she learned the name of Willis’s disease.
In a moderated chat at the Women’s Brain Health Summit in Toronto on Tuesday morning, Heming Willis told host Jeanne Beker about a neurologist who once told her that caregivers sometimes die before their sick loved ones, and they typically only end up asking for help far too late.
“It was such a wake up call for me. I did not realize that caregiving could be so harmful to your health,” Heming Willis said. Asking for help can feel like failure as a caregiver, she said, but really it is a sign of wisdom and strength.
In a brief discussion with National Post, Heming Willis said she took similar advice from the book Floating In The Deep End: How Caregivers Can See Beyond Alzheimer’s. It was published in 2021 by Patti Davis, the daughter of Nancy Reagan and former U.S. President Ronald Reagan, who was diagnosed with Alzheimer’s in 1994 and died ten years later.
She said Davis’s book helps give caregivers permission and a reminder to keep caring for themselves as they care for someone else. One specific piece of advice she uses when the whole thing seems overwhelming is to give herself thirty minutes to rage, cry and despair. “And then I move on,” she said.
This is common advice to the loved ones of people diagnosed with serious progressive diseases because it often points to a problem that caregivers themselves do not easily realize.
Compared to a dementia diagnosis, a caregiver’s struggles do not seem like the most obvious problems. But the urge to care, to sacrifice one’s self, to prioritize the seriously ill person above everything else, all of these factors can lead caregivers to ignore their own well-being. They risk being consumed by someone else’s illness.
Caregivers can end up feeling “unseen, unsupported,” Heming Willis said. As frustrations mount with a progressive disease, and as minor symptoms proceed to major ones, caregivers often need to be explicitly reminded that “you are not a failure,” she said.
Caregivers are also forced into the role of educators, to explain to others what is happening, even as they themselves are still learning. Heming Willis suggested keeping pamphlets or other information available to share with people, to ease the caregiver’s burden of explaining the same thing over and over again to worried loved ones.
That duty to explain is often felt most acutely with children. Children have different questions at different ages. Their worries change not only as their parent’s disease progresses, but also as they themselves grow up.
Heming Willis did not want dementia to be discussed in their home in “hushed tones,” she said. “I wanted to talk about his disease,” she said, and she didn’t want her children’s lives to be “clouded” by grief, fear and silence.
Today, Willis is “surrounded by love and support,” Heming Willis said. She and Willis have a close blended family with Bruce’s three adult daughters from his marriage to actress Demi Moore: Rumer, Scout, and Tallulah.
At the Women’s Brain Health Summit in Toronto, Heming Willis told the audience they are all “pulling through as a family,” and she feels “blessed to be on this journey and to navigate this with him.”
