Emma Heming Willis spoke at the Women’s Alzheimer’s Movement Forum on Monday, May 26, and reminisced about the day she and her husband, Bruce Willis, found out he’d been diagnosed with frontotemporal dementia (FTD).
“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 recalled, 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.”
Bruce was first diagnosed with aphasia before receiving his more specific FTD diagnosis in 2022. His family shared the update with fans in early 2023.
Emma, who was honored at the event for her advocacy for caregiving, continued, “I felt lost, isolated and scared. 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.'”
Now, she hopes to be that voice for others who may have to go through the same situation in the future. This fall, she’ll release her book The Unexpected Journey to serve as a “roadmap” that she “wish someone had handed [her] 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,” Emma, who shares two daughters with Bruce, added. She also acknowledged that she’s gotten access to “world-class experts” due to Bruce’s status and doesn’t want to “keep that information to [herself].”
In conclusion, she said, “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.”
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