Bruce Willis’ wife, Emma, has a vital message for caregivers

Caregivers of those with dementia sometimes refer to “a double death.” By that they mean what I experienced with my mother. At first the disease stole her mind and memory; several years later she died, leaving us again. Her illness left me confused and alone, even ashamed in a way. My mom’s story is becoming more and more common. Research published in Nature Medicine this year shows there are about 500,000 new dementia cases annually in the United States, and the number is expected to double by 2060.

Emma Heming Willis’ book, “The Unexpected Journey,” offers a deeply moving, personal perspective on the illness. Her husband, the A-list Hollywood actor Bruce Willis, was diagnosed with frontotemporal dementia (FTP), one of the most insidious and rare forms of the disease, in 2022, at age 67. “My worst nightmare had come true,” she writes.

At first I didn’t want to read the book, which the publisher describes as “a supportive, practical guide to navigating the complicated, emotional and transformative experience that is caregiving.” I feared that it would unlock those unsettling years with my mother and might make me look at my own senior moments — those day-to-day flubs for words and memories — in a more unsettling light.

It did neither. By the time I finished the book, I felt less alone, and more connected to the community of caregivers and experts that Heming Willis features in her book.

Twenty-three years younger than her husband, Heming Willis is the antithesis of a stereotypical Hollywood wife. (Willis was previously married to Demi Moore.) Still, for those seeking a People magazine fix, their love story has plenty of glamour — including the private plane Bruce sent to bring her to his Caribbean compound for a date in the early days.

That was then. Fast-forward a decade or so, to when Willis was first diagnosed with aphasia, retired from moviemaking and then received the devastating FTP diagnosis. Heming Willis takes us into this scary new world from Page 1, revealing first her fears and vulnerabilities, later her strength and resilience. She writes sensitively of her passage into the new territory of illness. “I suddenly had to lead the way on a journey with no map, no compass, and no sense of direction.” She describes her sense of isolation, especially before the couple disclosed the diagnosis in an Instagram post, and her desperate wish for a road map.

With “The Unexpected Journey,” she’s created one, for those who care for someone not only with FTP but all forms of dementia, which include Alzheimer’s, Huntington’s disease and Lewy body dementia. This is also a book for caregivers at large facing the void of uncertainty, the pain of isolation and the hard decisions that come with this territory.

Thanks to her privilege as the wife of a Hollywood star, which she openly acknowledges, Heming Willis has been able to connect with many of the best and brightest experts in dementia, caregiving, brain health, psychotherapy and nursing. Nearly every chapter features a substantive Q&A with one of these experts, which feels like a private consultation for readers. Chapters end with specific to-do lists, which help to break down what at first feels insurmountable.

In a few hundred pages, Heming Willis covers much ground, including making sense of the changing brain, the importance of building connection and community, making time for yourself, parenting while caregiving, the very hard decision to ask others for help and some of the lessons she’s learned, such as separating the disease from the person and the importance of caregivers taking care of themselves (which I don’t think can be stressed enough).

One of the most controversial aspects of Heming Willis’ story is her relatively recent decision to place her husband in a second, safer home with one-level living because of his continuing decline. She’s already detailed the wall of disapproval caregivers are up against: “Judgment from others and criticism from others.” To which she responds: “Love isn’t measured by where care happens but by the care itself. Every family’s needs are different, and there is no single ‘right way’ to do this.”

For anyone struggling with the decision to place a loved one in a skilled-nursing facility or in assisted-living memory care, Heming Willis’ decision to move her husband resonates deeply, as does her acknowledgment that “sometimes what is required for your person goes beyond your capabilities as a care partner.”

Their story is not over — she’s still in the thick of it with Willis and the two young daughters she has with him, along with an extended family, which includes Moore and the three adult children the actress shares with Willis.

Bruce Willis movies almost always have happy endings, but his personal story will not. The family is preparing for his eventual death from this disease. As for Heming Willis, she sums up her life to this point when she writes: “I don’t have a choice about Bruce having this disease, but I do have a choice in terms of how I react. I can wallow in sorrow, or I can take some power back and make the best of it for all of us.”

Her fortitude reminds me of the “Die Hard” movies, in which Willis plays the everyman hero fighting against overwhelming odds with wit and grit. Whether she knows it or not, Heming Willis is playing the same kind of reluctant hero.

• Steven Petrow is a contributing writer to The Washington Post and the New York Times, and a columnist for USA Today, who often writes about aging, health and LGBTQ issues.