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When Emma Heming Willis felt something was off with Bruce Willis, she thought it was his hearing loss from his “Die Hard.”
The previous model wrote a new book, “Unexpected Journey: Find strength, hope and self on the path of caregiving.” It focuses on her personal experience as a caregiver for her husband diagnosed with frontotemporal dementia (FTD). It also serves as a roadmap for new caregivers.
“When Bruce was shooting his first ‘Die Hard’ he shot multiple times under the table, but they didn’t wear any kind of ear protection on him,” the 47-year-old told Fox News Digital. “It was a large part of his hearing, and over time, for all of us, our hearing begins to progress a little as we age.”
Bruce Willis gave a “surprising” warning sign before his dementia diagnosis, his wife says
Bruce Willis and his wife, Emma Heming Willis, will be seen at the SVA Theatre in New York City on January 15th, 2019. Heming Willis first revealed to Fox News Digital that she had mistaken her husband’s dementia symptoms due to hearing loss she suffered while filming “Die Hard” in 1988. (Jamie McCarthy/Getty Images; 20th Century Fox/Getty Images)
“That’s what I thought was going on,” she recalled. “Maybe we have this misconception. He really doesn’t listen to me properly. I thought that’s why we didn’t communicate the same way we did before because of his hearing.”
Emma Heming Willis told Fox News Digital that she hopes her story will make other caregivers realize that she is not alone on her journey. (QUOC)
In the book, Heming Willis writes that after filming “Die Hard” in 1988, Willis “losts most of his hearing in one ear.” When the couple first met before they got married in 2009, it “was never raised any real issues.”
Still, Heming Willis realizes that her spouse has begun to “check out” for dinner. She wondered if, as he says, he had “Yak It Up” and “Girl Talk” for his children, including his three older daughters.
“Unexpected Journey: Find Strength, Hope and Self on the Path of Care” is currently available. (Open Field)
“I thought his hearing loss made him clench his hand in his lap and melting into his seat,” writes Heming Willis.
Still, it wasn’t the man she knew. Willis loves to spend time with his daughter and will often come home with his girl. And there were other signs that something was wrong.
“This is painful, but it’s reassuring to finally get a clear diagnosis,” the family said in a statement. “FTD is a cruel disease that many of us have never heard of and that anyone can hit.” (Jeff Vespa/VF14/Wireimage/Getty Images)
“Bruce had a strong stud when he was a child,” Heming Willis told Fox News Digital.
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Emma Heming Willis is writing a new book, The Expersed Journey, detailing her journey as she navigates her husband’s FTD diagnosis. (Jamie McCarthy/Getty Images)
“When he went to college, he came up with a way to work with that stud. He was always a stud-song guy, but he managed it all his life. And for me, some of his stud-songs made me realize that his stud-songs were back.
“I had never thought of, knew, or never knew about this kind of lack of empathy. It was a young manifestation of dementiaShe added.
From left: Bruce Willis is seen in 2019 along with three older daughters, Rumer Willis, Scout Willis and Tallulah Willis. They are accompanied by the actor’s ex-wife, actress Demi Moore, and his current spouse, former model Emma Heming Willis. (Stefanie Keenan/Getty Images from Goop)
On the surface, the 70-year-old now looked healthy. He did not “flag” the changes he was experiencing, she said. And the doctors found no health concerns. Still, Heming Willis knew something was wrong. His communication was not the same.
Watch: Bruce Willis has been diagnosed with frontotemporal dementia
“I knew something else was going on in my gut,” she said. “That’s when I approach his doctor. And I think it’s very important for other caregivers too. We know our people better than anyone else. It’s important to know that it’s okay. And then we go to our loved one’s doctor and say, “Something’s not right, and I really need to listen to me.”
In 2022, Willis’ family announced that Starr had been diagnosed with aphasia. This is a condition that causes a loss of the ability to understand or express a speech. Almost a year later, Starr’s family said Willis had a more specific diagnosis of FTD.
Approximately 60% of people with frontotemporal dementia are 45-64 years old, Alzheimers.gov It has been reported. (Team GT/GC images/Getty images)
The Frontotemporal Degeneration Association describes FTD as a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain that affects behavior, language and movement. Associated Press. Aphasia can be a symptom of it.
Bruce Willis and Emma Heming Willis were married in 2009. They share two young girls. (Britta Pedersen/Picture Alliance by Getty Images)
The association describes frontotemporal degeneration as an “inevitable reduction in function,” with average life expectancy being 7-13 years after the onset of symptoms. Progressive disease is terminal and there is no treatment.
As Heming Willis was “freely silent” from the devastating news, all she was given was a “flat pamphlet.”
Emma Heming Willis said she was given a pamphlet following her husband’s diagnosis. (dia dipasupil/wireimage/getty images)
“When I got out of there, I never felt so lonely, I’m very isolated,” she said. “I didn’t know of another family who was experiencing this, especially with two young children.
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In 2022, Bruce Willis left acting after being diagnosed with aphasia. In 2023, Starr’s family announced that he had received a more specific diagnosis of frontotemporal dementia (FTD). (Yui Mok/PA images via Getty Images)
Over the years, Heming Willis has sought the guidance of doctors and professionals to better understand FTD, its advancements, and what caregivers can do to give their loved ones the best possible quality of life. She shares discoveries and conversations on social media.
“I My husband’s love and care Heming Willis said. But I think it’s part of this advocacy that helped me too, and I can use my voice to help someone else. It was a real comfort to me so that I could share what I learned. I think being able to give back in any way I can is the way I continue on this journey. ”
There are also many moments of joy through the pain of seeing the disease progress, she said.
FTD is the most common dementia for people under the age of 60. (VCG via Getty Images)
“It’s about being with my husband and just sitting with him,” she said.
Emma Heming Willis and Bruce Willis enjoy a date night in New York City a year before tying the knot. (Duffy-Marie Arnoult/Wireimage/Getty Images)
“He is very present today. He doesn’t think about what will happen yesterday or later. He’s just in his body here. And I’m sitting with him, holding his hand, holding him, and we laugh. Our lives don’t end.
Heming Willis hopes that by revealing himself with devastating experiences, other caregivers will not feel alone on the journey. But today it’s all about taking one day at a time, for myself and my husband.
Bruce Willis and Emma Heming Willis are the parents of 13-year-old daughters Mabel and 11-year-old Evelyn. (Lev Radin/Pacific Press/Lightrocket via Getty Images)
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“I’ve come a long way,” she said. “I didn’t expect to find laughter again after being diagnosed with Bruce. I think it took me a while. I’m still learning. But I’m trying my best to do my best.”
