Emma Heming Willis Shares Early ‘Downfall’ as Caregiver for Husband, Bruce, Before Finding Her ‘Roadmap’ (Exclusive)

When Bruce Willis was diagnosed pinch frontotemporal dementia successful 2022, his wife, Emma Heming Willis, was fixed almost nary guidance astir what to do next. 

“We received a test and sent distant pinch nary hope, nary guidance, nary nothing, and I really had to fig retired really to put resources into place,” Emma, 46, tells PEOPLE. “And it was a batch of searching nan Internet, trying to fig things out.”

The entrepreneur, writer and laminitis of Make Time Wellness vowed to study everything she could astir her husband's condition. But while researching and speaking to experts, nan mother of 2 — she and Willis share daughters Mabel Ray Willis, 13, and Evelyn Penn Willis, 11 — put everyone else’s needs up of her own.

“I deliberation that was my downfall. I thought that that's what I was expected to do,” she said. “What I've learned successful each of this is that nan astir important personification is nan caregiver. We person to attraction for nan caregiver, because erstwhile we attraction for ourselves, we tin past show up for nan personification that we love.”

Since that diagnosis, Emma has go an advocator for caregivers, a domiciled she was thrust into without warning. Arguing that caregivers request much support, consciousness and guidance, she wrote a book, The Unexpected Journey, astir her experience.

“It's nan book that I still need. For me, it's for illustration I'm not astatine nan extremity of this journey. I'm successful nan midst of it. I emotion it for myself arsenic my ain benignant of individual roadmap. It's really helped me. And nan dream is that it will thief personification else,” she said of nan work, which will beryllium released connected Sept. 9. “My dream is that 1 day, erstwhile a neurologist diagnoses personification pinch dementia, that is nan roadmap that they put successful this caller caregiver's hands.”

She later added, “One of nan astir important and astonishing truths I learned while penning nan book, and thing echoed by 25 experts and specialists I interviewed for it, was this: The champion point that you tin do for nan personification that you emotion is return attraction of yourself. Why? Because nan ecosystem of attraction doesn't activity unless nan caregiver is cared for.”

It allowed her to beryllium much coming for Bruce.

When nan Die Hard actor, now 70, was diagnosed, Emma was near pinch unanswered questions.

“I went out, I searched for answers, I put together an unthinkable team, and that's a privilege. Most Americans are not capable to do that,” she said. “So pinch that, it is my work to beryllium capable to walk each this accusation that I've learned onto nan adjacent caregiver.”

For her advocacy, Emma was honored successful Las Vegas astatine the Women's Alzheimer's Movement Forum astatine nan Cleveland Clinic Lou Ruvo Center for Brain Health connected May 26. 

“I was truthful tense successful those early days because I was truthful frightened astir [Bruce’s diagnosis] getting retired earlier we were fresh for it to get out. Hearing really group talk astir dementia and hushed tones, that was not going to activity for me,” she said successful a video earlier receiving her award. “There was thing that Bruce did that could person prevented it, and location was thing that we arsenic a family were going to beryllium ashamed of. 

“We person 2 young daughters, and I ne'er wanted them to deliberation this was immoderate benignant of acheronian family secret. No, we're not going to do that. We're going to travel out, we're going to beryllium large astir it, and we're going to make a difference. Caregivers request to beryllium cared for. They cannot do this alone, and it's really important to trust connected your community, and I didn't cognize that successful nan beginning.”

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