Emma Heming Willis‘ life was forever changed the moment her beloved husband, Bruce Willis, was diagnosed with frontotemporal dementia in 2022.
While speaking at the Women’s Alzheimer’s Movement Forum in Las Vegas on Monday, the mom of two opened up about the isolating moment that inspired her upcoming book, “The Unexpected Journey.”
“On the day Bruce got his diagnosis, we left the doctor’s office with a pamphlet and a hollow goodbye. No plan, no guidance, no hope, just shock,” she told the crowd during the forum, per People.
“The future we imagined simply vanished, and I was left trying to hold my family together, raise our two young daughters, and care for the man I love while navigating a disease I barely understood.”
In March 2022, it was announced that Willis would be “stepping away” from his acting career due to an aphasia diagnosis. It was later announced that he had been diagnosed with frontotemporal dementia.
“I felt lost, isolated and scared,” Heming Willis, who was being honored for her advocacy for caregiving, said. “What I needed in that moment at that appointment wasn’t just medical information. I needed someone to look me in the eye and say, ‘This feels impossible right now, but you will find your footing. You will survive this and you will grow because of it.'”
The author will release her book this September.
“The book is the roadmap I wish someone had handed me on the day in 2022,” she said. “I wrote it for other caregivers who are desperate for answers, aching for support, and wanting to be seen and wondering how they’re going to make it through.”
“I’ve had access to world-class experts because of who Bruce is, and I know that’s a privilege, so I didn’t want to keep that information to myself… I have a megaphone and resources that others don’t.”
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In April, Heming Willis – who shares daughters Mabel Ray Willis, 13, and Evelyn Penn Willis, 11 – unveiled the cover of her book on social media and gave followers a glimpse of what life has been like since her husband’s diagnosis.
“Born from grief, shaped by love, and guided by purpose, this is the book I needed back when Bruce was first diagnosed, and I was frozen with fear and uncertainty,” she penned on Instagram about the book.
“This is the book I trust will help the next caregiver. It is filled with support, insight, and the hope needed to navigate this journey.”
The author shared a sweet black-and-white photograph of her and Bruce on the book cover, as she longingly looked at her husband with all smiles.
“I wrote the book I wish someone had placed in my hands the day we got the diagnosis,” her second photo on Instagram read.
“This book is for all of us finding our way through the unknown with love, grit, and courage. You are not alone.”
During the forum, Heming Willis also stressed the importance of caring for caretakers.
“We should be talking about this so much more because at some point, we will be caring for someone that we love, or we might need care ourselves. So this is a really important conversation that hopefully, one day, the government will take seriously.”
