Emma Heming-Willis has opened up about the challenges she faces as the primary caregiver for her husband, Bruce Willis, who is battling frontotemporal dementia (FTD). In her upcoming memoir, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path, set to be released on September 16, 2023, in Australia, Heming-Willis details her emotional journey and the signs that led to the diagnosis.
Willis, a celebrated actor known for his roles in over 100 films, including the iconic Die Hard series, was initially diagnosed with aphasia in early 2022. This language disorder was later identified as a symptom of FTD, a progressive condition that affects communication abilities. Heming-Willis reflects on the moment she noticed her husband “checking out” during family dinners, a behavior she initially attributed to his hearing loss from filming.
In her memoir, she writes, “When we first got together, this never posed a real problem,” but over time, she observed a concerning shift in his engagement with family. “He would sit back and let everyone else do the talking without contributing very much.” Heming-Willis describes how, at gatherings filled with his five daughters, Willis would retreat into silence rather than join the lively conversations.
This shift in behavior prompted Heming-Willis to seek further medical advice, ultimately leading to the more serious diagnosis. She underscores the importance of trusting one’s instincts when it comes to health concerns. “It is crucial for partners and caregivers to back their judgment and find medical professionals who will listen,” she advises.
Heming-Willis also reveals the painful decision to establish a separate home nearby for Willis, allowing him to receive round-the-clock care. This transition, she admits, was difficult to communicate to their daughters, Mabel, 13, and Evelyn, 11. “After all, this is my husband, and having him in another home was not part of the future we’d mapped out together,” she wrote, expressing the emotional weight of this choice.
The memoir serves not only as a personal account of her journey but also as a guide for others facing similar circumstances. Heming-Willis emphasizes the need for caregivers to prioritize their well-being, a message that resonates with many who endure the physical and emotional toll of caregiving. She states, “I know that no two caregiving journeys are the same, but we are connected by the same unchosen thread.”
As both a tribute to her husband and a resource for caregivers, The Unexpected Journey aims to provide solace and support to those navigating the complexities of dementia. The book is published by HarperCollins and will be available in Australia this week.
Through her candid reflections, Heming-Willis hopes to foster a sense of community among caregivers, reminding them that they are not alone in their struggles. As she concludes, “In time, you will find your footing and a way forward.”
