Dementia and treatment
Bruce Willis’ wife wrote a dementia care guide
Hollywood star Bruce Willis’ career came to an abrupt end due to dementia. His wife Emma shared his “very special journey” in a book. He would be proud of it, he told dpa.
Action star Bruce Willis was 67 years old when he was diagnosed with rapidly progressive dementia in November 2022. “My worst nightmare came true,” said his wife Emma Heming Willis, describing the moment doctors told her he had frontotemporal dementia (FTD). In her book “A Very Special Journey,” this 47 year old woman explains how she plays a role in caring for her partner.
“It was a very traumatic experience,” Heming Willis said in an interview with the German Press Agency. “We left the doctor’s office with nothing. No hope, no treatment plan, no way out. Just the suggestion to come back in a few months.” He didn’t even know how to pronounce this disease correctly, let alone how to deal with it. “Understanding the severity of this disease, and what impact it had on Bruce, was incredible. It was a heartbreaking and isolating time.”
Books as “life jackets”
With “A Very Special Journey,” the mother of two has written a book that she loves as a guide to this challenge. The subtitle: “Finding courage, hope and inner strength while caring for a relative with dementia.” He hopes that this can be a “buoyant” for many affected communities who suddenly become care partners.
In over 350 pages she describes her own journey, her fears, where she sought help and found inner strength, and how important self-care is. He spoke with dozens of doctors, nurses and researchers, sharing advice from support groups and experiences with other sufferers. She wrote down personal details about her husband on paper – not as a tell-all book, but as a guide.
“Our story got attention because it was about my husband, but the real story is about caregivers and how we can support them on this journey,” Heming Willis told dpa. He was very confident that Bruce Willis would approve of this book. “He was someone who always wanted to help others. He was always generous and stood up for things that were important to him and used his name and influence to make a difference. I know he would be proud of this book.”
In the chapter “Bruce: A Love Story” he explains how he met the Hollywood star in 2005 through his fitness trainer. When they married on a Caribbean island in 2009, Willis’ ex-wife Demi Moore and their three daughters were also in attendance as guests. What she appreciated most about Bruce was his humor and sense of family, wrote Heming Willis, a former model. Hollywood events were limited to the sidelines, life with his two daughters Mabel, now 13, and Evelyn (11), became the focus.
Bruce Willis no longer lives at home
In the book and interviews, Heming Willis also talks about the difficult decision to move her husband to a second home in the neighborhood. He announced the move in August. “The question we asked ourselves was, what is safest for her? We wanted to create a caring environment where she would receive 24-hour care, but at the same time our daughters would have a home where they could thrive and feel safe.” People with dementia may be very sensitive to noise and need rest. Playing in the afternoon or spending the night with housemates is no longer possible.
The author also does not ignore other difficult topics. Many other nurses felt guilt and shame for not being able to handle the situation, she said. Through conversations with experts, he learned to deal with it better. “Taking care of yourself is not selfish, but important to get through the long journey.”
Early diagnosis is important
He looks back at the early days of his illness, with worrying symptoms even before there was a diagnosis. It’s easy to see that something is wrong. FTD can manifest when the affected person becomes apathetic, irritable, or careless, writes Heming Willis. She initially interpreted her husband’s change in behavior as “crazy marital problems.”
In early 2022, Willis was diagnosed with aphasia, which affected his cognitive abilities. At that time, the family announced publicly that the star of films such as “Die Hard” and “Armageddon” would end his acting career at the age of 67 due to illness. At the end of the year, a more precise diagnosis came – it was frontotemporal dementia, in which nerve cells are initially broken down in the forehead and temple areas of the brain, a rare, rapidly progressive and incurable disease.
Early diagnosis will make a big difference, Heming Willis said today. Relatives often feel overwhelmed when the illness is finally discovered. She now speaks openly about her own experiences to help others and make a difference. “This is truly a crisis. We must find ways to provide better support to caregivers and our aging population. Because each of us will face dementia, as a caregiver or as someone needing care.”
He considers himself lucky because of the help of friends and family. “We all love Bruce and each of us has a special relationship with him,” said Heming Willis. “Our daughter saw that no one avoided her just because she had a serious illness.”
The 47 year old man appeared determined and strong. He appeared on talk shows and gave interviews for his book. But he explained: “No, I don’t feel well.” The author writes that it is “extremely painful” to watch someone you love lose themselves little by little. She told DPA that she now connects with her husband in a different way. “FTD is a progressive disease and I have been through every phase of it. You learn to adapt, accept people and find meaning in new ways. My life with Bruce is still very meaningful, just in a different way.”
dpa
