“No two caregiving journeys are alike,” writes Emma Heming Willis, the wife of actor Bruce Willis, who was diagnosed in 2023 with Frontotemporal Dementia (FTD), a rare form of dementia affecting behavior, movement and language. “But we are connected by the same unchosen thread.”
In The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path, Emma writes movingly and hopefully about the blessings and burdens of being thrust into the role of caregiver, emerging as a passionate voice for care partners and families navigating neurodegenerative disease. Together with her collaborator, Michele Bender, she offers an essential blueprint for others confronting some of the same issues facing her own family.
“My grief can still paralyze me,” she shares in the pages of the book she wishes someone had handed her when her husband was first diagnosed. “I still have a hard time accepting what is, yet FTD doesn’t give you many options. It can suck all the air out of a room. So I’ve made a choice to pump oxygen back into our lives, for the sake of our girls, Bruce, and me. And to give the middle finger to this disease.”
Join us as we visit with Emma Heming Willis and her co-author Michele Bender for a heartbreaking and heart-lifting conversation on what it takes to tap the universal elements in such a deeply personal story—and what it means to step from an unimaginable darkness at home to stand in the world as a light for others.
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