Emma Heming Willis has revealed that she initially attributed her husband Bruce Willis’ early dementia symptoms to hearing loss he sustained while filming “Die Hard” in 1988. The 47-year-old former model shared these details in her new book “The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path” and in recent interviews promoting the memoir.
According to Heming Willis, “When Bruce was shooting the first ‘Die Hard,’ he shot a gun underneath a table multiple times, and they didn’t have him wear any kind of ear protection.” She explained that this incident took out a huge percentage of his hearing, and she initially thought their communication problems stemmed from his deteriorating ability to hear her properly.
In her book, Heming Willis wrote that after filming the 1988 action movie, Willis lost a large percentage of his hearing in one ear. She noted that this hearing loss never posed a real problem when they first got together before marrying in 2009, but she began noticing changes in their relationship over time.
The wife of the 70-year-old actor observed that Willis started to check out during family dinners, leading her to wonder if he was simply letting his daughters have girl talk. She assumed his hearing loss made it easier for him to retreat into himself with his hands clasped gently on his lap. However, this behavior was inconsistent with the man she knew, who loved spending time with his daughters and would rush home to be with them.
Heming Willis also noticed the return of a childhood stutter that Willis had previously learned to manage. She indicated that Bruce had a severe stutter as a young child, and some of the first signs of his condition were that his stutter was coming back. Their relationship began to feel very different, with conversations and connections feeling off in ways she struggled to understand.
Willis was initially diagnosed with aphasia in 2022, a condition that affects cognitive abilities and can involve difficulty with communication. The following year, his family announced that his condition had progressed and he had received a more specific diagnosis of frontotemporal dementia.
The actor’s hearing problems were not unknown to his family. His daughter Rumer Willis previously suggested in 2013 that her father struggled in interviews and could appear awkward due to his hearing difficulties. Another daughter, Tallulah Willis, told Vogue in 2023 that the family initially attributed his unresponsiveness to Hollywood hearing loss, often saying “Speak up! Die Hard messed with Dad’s ears.”
The communication difficulties became so pronounced that Heming Willis admitted she considered divorce before understanding her husband’s condition. She felt like her marriage was crumbling and thought Willis no longer loved her, as he had become a different person from the man she married. She described feeling confused about what was happening and unable to figure out why their relationship was changing so dramatically.
In her memoir, Heming Willis details the devastating progression of Willis’ condition. She writes that all caregiving journeys can feel lonely and isolating, but the dementia caregiver’s path often feels even more so. Because Willis cannot communicate with her due to the variant forms of frontotemporal dementia he has, specifically primary progressive aphasia, she must make judgment calls for him about absolutely everything.
Heming Willis explained that she cannot ask her husband how he is feeling, what is wrong, or if something hurts. Instead, she must read his body language or look into his eyes to understand what is bothering him and what he is experiencing. She compared this intuitive understanding to the instinct that parents have with their children.
The couple has now developed their own form of communication. Heming Willis described how she and Bruce now have their own language and way to be with each other. This involves sitting with him, walking with him, and listening to him as he tries to verbalize in his own way while hearing and validating him.
Recently, Heming Willis made the difficult decision to move Willis into a separate home where he receives round-the-clock medical care. She defended this choice against criticism, stating it was the safest and best decision not just for Bruce, but also for their two young daughters, Mabel, 13, and Evelyn, 11. She emphasized that Willis now has the best care 100 percent of the time, and his needs are met consistently.
Frontotemporal dementia is described by the NHS as an uncommon type of dementia that causes problems with behavior and language. Like other types of dementia, the condition tends to develop slowly and gradually gets worse over time. Heming Willis has called FTD an unkind disease that constantly takes, even when it seems it cannot take any more.
The family’s journey with Willis’ diagnosis has been supported by his ex-wife Demi Moore and their three older daughters together. Heming Willis noted that their two younger daughters have adapted to their father’s disease and know how to move around him, though she acknowledged that while it is beautiful to see their tenderness, it remains hard for them because they miss him.
