By Beth Pinsker
At a book launch event with Anderson Cooper, the author talks about ‘The Unexpected Journey’
Bruce Willis and Emma Heming Willis in 2019 in New York City.
At a banquet hall in New Jersey, Emma Heming Willis was the headliner on an evening for caregivers that had psychologists, financial planners and lawyers as warm-up acts.
About 300 in the rapt audience of caregivers from the New York and New Jersey area clutched their goody bags that included one-day-early copies of her new book, “The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path,” and eagerly awaited her answers to questions asked by the host, journalist Anderson Cooper.
“I feel like we’re sitting in a room of heroes,” Cooper said, pausing and tearing up. “And I’m just visiting.”
Heming Willis responded, “People do it because there’s no other option.”
When she first became a caregiver to her husband – the actor Bruce Willis, who was formally diagnosed with frontotemporal dementia (FTD) in 2022 – Heming Willis didn’t know she was allowed to ask for help. His symptoms started before doctors put a name to his disease, first with the recurrence of a childhood stutter, and then with other behavioral changes.
There are about 63 million caregivers in the U.S. currently, according to AARP’s latest report, and most of them are like Heming Willis – unpaid, untrained and in over their heads. Dementia is a particularly hard disease to care for at home. FTD, for example, affects about 60,000 people in the U.S., according to the Association for Frontotemporal Degeneration. That’s just a small subset of those affected by all forms of dementia, which also include Alzheimer’s, Lewy body dementia, Parkinson’s and vascular dementia. About 52% of Americans will experience some form of dementia in their lifetimes.
It’s hard to go it alone, but asking for help came with guilt and shame for Heming Willis. “Society says ‘this is my husband and I will do all the things necessary,’” she said.
Eventually, the doctors and her stepdaughters from Bruce’s 13-year marriage to Demi Moore helped change her mindset. “Scout said ‘I’m more worried about you than dad.’ And that was another wake-up call,” she said.
That brought the evening another step closer to discussing the elephant in the room: that Heming Willis had moved Bruce to a second home, and was being criticized for it in some online outlets and social media for abandoning him or not fulfilling her responsibilities.
In the book, Heming Willis describes her decision-making process. She knew she would be judged and tried to head that off by explaining the difficulties of FTD, especially managing a person with it in a house with young children, as her two daughters were 8 and 10 at the time of the diagnosis and are 11 and 13 now.
Cooper asked why she went public about the diagnosis initially.
“I wanted to be able to control our narrative,” Heming Willis said. “Things get twisted and turned. It doesn’t always work out to my benefit.”
“It’s a scary thing,” Cooper chimed in.
A big part of her coming forward was to raise awareness of FTD. When Bruce was first diagnosed, the doctors sent them away with nothing but a pamphlet and told them to check back after a few months.
“I want a different outcome for other families,” she said. “I want there to be a treatment, or a cure, and not to be sent away with nothing.”
Addressing the second home
A member of the audience spoke about her own husband, who was diagnosed at 591/2 with early Alzheimer’s but had been having symptoms for 17 years prior with no explanation. He had reached a stage where she was thinking of moving him into a basement apartment, and wanted to know how Heming Willis had managed to move Bruce. Did he know what was happening? Did she just walk him over there?
“It’s a second house,” said Heming Willis, referencing the backlash that has alternately described the living situation as a nursing home and a care facility and has implied she isn’t doing her job as a caregiver.
“I wanted to do the safest thing for him and our two kids. That’s my priority. He’s doing so well. His needs are met 100% of the time,” she said. “I know it raises eyebrows. I am braced for it. You have to do what’s right.”
The audience broke out into applause. Another questioner described her challenges with her father, who also had FTD, who acted inappropriately and was difficult to manage. People with dementia often have trouble sleeping and wander off. Heming Willis noted that Bruce had a hard time with noise, and that was hard in a house with two kids. The cost has been overwhelming, she said, and she’s grateful she has the resources to cover paid caregivers.
Cooper added that when his mother was sick, he hired nurses to care for her and had to work extra weekends to cover the cost. When he suggested scaling back to less skilled help, “she looked at me like I was trying to kill her,” he said. So he just kept working to cover the costs.
For others trying to deal with the cost of care, she offers resources in the book for help, from financial to psychological.
Her own touchstone is that when she is with Bruce now, he’s very much in the present, and it’s peaceful for her just to sit with him and hold hands.
“He’s wistful. He lives in the here and now and he’s not in pain. I often wonder what that’s like, not worrying about yesterday or the future. When I’m sitting next to him, we just settle in.”
Got a question about investing, how it fits into your overall financial plan and what strategies can help you make the most out of your money? You can write to me at beth.pinsker@marketwatch.com. Please put “Fix My Portfolio” in the subject line.
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-Beth Pinsker
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09-09-25 1625ET
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