Emma Heming Willis’ Future Plans With Bruce ‘Simply Vanished’ (Exclusive)

The future that Bruce Willis and Emma Heming Willis had planned for the rest of their lives all but disappeared before their very eyes when he was diagnosed with frontotemporal dementia in 2022. 

“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 said Monday in Las Vegas at the Women’s Alzheimer’s Movement Forum.

The entrepreneur, author and founder of Make Time Wellness continued: “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.”

Frontotemporal dementia, commonly called FTD, is the most common form of dementia for people under the age of 60. There is no treatment or cure. 

“I felt lost, isolated and scared,” she told the crowd on stage after being honored for her advocacy for caregiving. “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.’ ”

In those early days of little information, Emma took matters into her own hands and researched FTD. In September, she’ll release The Unexpected Journey about her experiences and advocacy. The “trauma” of that doctor’s visit inspired her to write the book. 

“The book is the roadmap I wish someone had handed me on the day in 2022. 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,” she said. 

Emma, who shares daughters Mabel Ray Willis, 13, and Evelyn Penn Willis, 11, with the Die Hard actor, adds, “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.”

Over the past three years, Emma has supported legislation resolutions and proclamations across the country to raise FTD awareness.

“I’m just one of many people doing this work, and together we are making progress,” she said during the Forum at the Cleveland Clinic Lou Ruvo Center for Brain Health. “This isn’t how I saw my future in 2022. I definitely didn’t choose this path, but I do choose how I walk it with intention and purpose, just like Bruce has always lived his life, and just like, I hope our daughters will live theirs. No two caregiving journeys are the same, but they are all stitched together by heartbreak, resilience, and love.”

Maria Shriver, who has long shone a light on brain health, believes caregiving should be something that unites the country.

“This is an issue that should be devoid of politics, should be devoid of partisanship, and really is something that we just never understood why these issues weren’t the political issues of our time, because they affect every single family,” Shriver, the Women’s Alzheimer’s Movement founder, said.

“Why isn’t caregiving the single most important issue that we’re talking about, or women’s health? Why aren’t we rectifying that easily? Because it’s something we should be able to agree on. People are having unbelievable wars in their own families over these issues. This is the war we can solve. This is where peace comes, and I really believe that these issues should be the issues that can bring us together.”

Added Emma, “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.”

Never miss a story — sign up for PEOPLE’s free daily newsletter to stay up-to-date on the best of what PEOPLE has to offer, from celebrity news to compelling human interest stories.