Bruce Willis' wife is turning her personal heartbreak into a movement. Emma Heming Willis, 46, a model and entrepreneur, was honored on May 26 for her advocacy work at the Women's Alzheimer's Movement Forum at the Cleveland Clinic Lou Ruvo Center for Brain Health. Just two years ago, she was navigating her husband's frontotemporal dementia diagnosis all by herself.
"We received a diagnosis and were sent away with no hope, no guidance, no nothing," Emma told PEOPLE. "I really had to figure out how to put resources into place." With no clear direction from doctors, she did like many of us often do – turned to Google. Emma researched everything she could while parenting their daughters, Mabel Ray, 13, and Evelyn Penn, 11.
Her instinct was to pour everything she had into caring for Bruce, 70. But, all that caring wasn't sustainable. "I thought that that's what I was supposed to do," she explained. "What I've learned in all of this is that the most important person is the caregiver."
© WWD via Getty ImagesEmma also found strength in family. Bruce's ex-wife Demi Moore and his three daughters from that marriage, Rumer, 36, Scout, 33, and Tallulah, 31, remain incredibly close and supportive throughout his health journey. The blended family post on Instagram, showing they are all in it together.
While looking for answers on Bruce's diagnosis, Emma built a team of experts and found a calling at the same time. She desperately wanted to help others going through similar challenges.
"The best thing that you can do for the person you love is take care of yourself," she said. "The ecosystem of care doesn't work unless the caregiver is cared for."
© Variety via Getty ImagesEmma decided to put these lessons into a book. The Unexpected Journey comes out September 9. About the book, she said: "I still need [it]. I'm not at the end of this journey. I'm in the midst of it."
While she hopes the book supports other caregivers, Emma also wants it to shift how dementia is talked about.
"Hearing how people talk about dementia in hushed tones, that was not going to work for me," she said in a video shared before the ceremony. "There was nothing Bruce did that could have prevented it, and we're not going to be ashamed. We have two young daughters, and I never wanted them to think this was some kind of dark family secret."
Instead, the family chooses to face it head on and be open. "We're going to come out, we're going to be loud about it," Emma said. "And we're going to make a difference."
Emma acknowledges her and Bruce's access to care is a privilege and she sees it as her responsibility to share what she's learned.
© Instagram"Most Americans are not able to do that," she said. "So with that, it is my responsibility to pass all this information onto the next caregiver."
From confusion and fear to compassion and advocacy, Emma is showing how resilient caregivers are and using her voice to help others feel less alone.
