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Emma Heming Willis says the care of her husband, Bruce Willis, is uncontroversial.
Like many caregivers, the mother of two has been forced to make tough choices for her family in recent years. However, in his battle with frontotemporal dementia (FTD), no one has been more difficult than the decision to move Willis to another home, age 70. This is the move that sparked debate on social media.
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 the star. It also serves as a roadmap for new caregivers and their families.
Bruce Willis’ wife attributed the role of “dying” when signs of dementia surfaced.
Bruce Willis and his wife Emma Heming Willis will be seen at the “Glass” New York premiere held at the SVA Theatre on January 15th, 2019. The actor’s family announced that he had been diagnosed with FTD in 2023. (Jamie McCarthy/Getty Images)
“sometimes [your loved one’s] Heming Willis told Fox News Digital. And if they live with you, they get a say. But I don’t think it’s controversial just because someone’s care plan looks different to others. ”
“I felt there was so many stigma in this conversation that I wanted to reveal this,” the 47-year-old said. “You can imagine judgment and criticism.
Watch: Bruce Willis has been diagnosed with frontotemporal dementia
In 2022 Willis’ family announced He had been diagnosed with aphasiaconditions that cause a loss of ability to understand or express speech. The “Die Hard” star retreated from his post-diagnosis performance that year.
“Unexpected Journey: Find Strength, Hope and Self on the Path of Care” is currently available. (Open Field)
Almost a year later, his family revealed that Willis had a more specific diagnosis of FTD.
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.
Emma Heming Willis and Bruce Willis enjoyed a date night in New York City in 2008. (Duffy-Marie Arnoult/Wireimage/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.
Emma Heming Willis told Fox News Digital that the public needs to support and raise caregivers that are doing their best. (QUOC)
As the illness progressed, Heming Willis realized that the actor needed more support while caring for his daughters Mabel, 13, and 11-year-old Evelyn.
“It was one of the hardest decisions I had to make, but I knew it was the right one. It’s the safest and best for our family, for the safety of the blues and the safety of our girls,” she explained. “It was important that as his needs changed, we needed something different to support his needs. Our girls also needed a home to support their needs.”
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Emma Heming Willis said she was given a pamphlet following her husband’s diagnosis. (Jeff Vespa/VF14/Wireimage/Getty Images)
“I think what happens with caregiving is that people don’t understand that your loved one’s needs are not met 100% of the time,” she said. “Now I feel relieved to know that Bruce is supported 100% of the time. I don’t feel any more.”
Bruce Willis’ family announced in 2022 that the actor had been diagnosed with aphasia. This can be a symptom of FTD. (VCG/VCG via Getty Images)
Willis’s one-storey home is nearby and designed for his treatment and safety, People Magazine It has been reported. It provides a “quiet, comfortable and safe environment with 24-hour care.” His daughter can also become the “high-spiritual child himself” along with her mother. For FTD to progress, Willis needs to be in a “serene and calm environment,” Heming Willis said.
Their daughters store clothes, toys and art in Willis’s home, allowing them to spend as much quality time as possible with their father.
Emma Heming Willis details the challenges that come with being a caregiver for her new book. (James Devaney/GC Images/Getty Images)
“If I’m judged To buy a second home What does that look like to other care partners who have to put their loved ones in the facility to make sure my husband is taking care of him properly,” Heming Willis pointed out.
Bruce Willis will be 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)
“Can you imagine the criticism and judgment they face? I wanted other caregivers to know that you’re not alone, but that everyone’s caregiving journey is different. And what we’re supporting other caregivers is that we’re showing up for them. We’re not criticizing or judging them.”
“We’re already struggling with ourselves,” she recalled. “We already have shame and guilt. We don’t need anything extra. We need to help.”
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Emma Heming Willis previously revealed to Fox News Digital that she first mistook her husband’s dementia symptoms due to hearing loss that was affected while filming “Die Hard” in 1988. (20th Century Fox/Getty Images)
Heming Willis shared his daughter He has done a “beautiful job” to support his father.
Bruce Willis and Emma Heming Willis were married in 2009. (Britta Pedersen/Picture Alliance by Getty Images)
“I was very fortunate to have set up the right support for them and myself,” Heming Willis said. “I wanted to know the best way to show up for them and tell them what they might experience or see. I just want to help them navigate them, and I think their relationship with their father is beautiful.
Watch: Rumer Willis latest health information for Dad BruceWillis
Over the years, Heming Willis has sought guidance from doctors and professionals to better understand FTD, its progress and what caregivers can do to give their loved ones the best quality of life. She shares her Social media survey results and conversations.
It’s not getting easier over time.
Bruce and Emma Heming Willis share two young daughters. (Theo Wogo/Getty Images from the Lincoln Center movie)
“I’m constantly saddened,” admitted Heming Willis. “This is always the same as me. But… you can sadden yourself and still live a full life. It doesn’t make you a caregiver as well, as you choose to live too.
“I think it’s very important for caregivers to find someone they trust who they can talk about, a place where they don’t make judgments. They can speak through their emotions. I always say it to my girls better.
Emma Heming Willis hopes her book serves as a roadmap for new caregivers. (Neil Rasmus/Patrick McMullan via Getty Images)
The illness forced Heming Willis to confront the devastating truth. In her bookshe wrote that after learning dementia, she learned the “consequences of death,” she felt that “the ground had been pulled out from under me.” Still, educating herself about the FTD and its harsh truths has allowed her to become a better caregiver.
Approximately 60% of people with frontotemporal dementia are 45-64 years old, reported Alzheimers.gov. (Team GT/GC images/Getty images)
“I think it really helped me get out of … denial,” she told Fox News Digital. “It’s not going to help my situation. …I ask questions, and I know that sometimes I don’t like answers, but it’s important to understand.
“We left the appointment of a diagnosis without guidance and without roadmap. There was nothing,” she said. “I’ve found these incredible experts and experts over the past few years, but I’ve had to dig so deep for that, and it’s not readily available unless you have time, energy, access and resources.
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Emma Heming Willis says she is inspired by living the best life possible for herself. (Angelawice/AFP via Getty Images)
“What I noticed with these experts was that they gave me such valuable information. I wanted to put it all together – all the insights, their wisdom – and share it with the next caregiver.”
“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.” (Yui Mok/PA images via Getty Images)
Heming Willis hopes her book will help other caregivers who are lost.
“They’re not alone,” she said. “It’s okay to take care of yourself, and if you don’t want to take care of yourself, it’s going to be very difficult to keep up with this journey… When we ask for help, we’re not failure.
