Emma Heming Willis
She is wracked with guilt
Bruce Willis’ dementia diagnosis has turned his family’s life upside down. Why wife Emma struggles with guilt.
It has been known since the beginning of the year that Hollywood star Bruce Willis, 68, is suffering from dementia. His family announced in February that the actor had been diagnosed with frontotemporal dementia and has demonstrated tireless solidarity ever since. For wife Emma Heming-Willis, 45, the time before the announcement was not easy, but afterwards she felt great relief: “After our family shared the news, I could breathe again,” Willis’ wife now writes in a blog entry for Maria Shriver’s “Sunday Paper“.
Diagnosis made Bruce Willis’ wife more compassionate
“Suddenly I was no longer alone and I was able to seek the help that Bruce, I and our family desperately needed,” adds the 45-year-old. In the past few months, she has learned, among other things, how important it is to have a community. “Bruce’s FTD diagnosis was devastating, but it explained so much of what we had been through,” writes Heming Willis. “With a specific diagnosis you have the chance to find a community. You can connect with people who immediately understand your story. You don’t have to explain yourself.”
Today the 45-year-old is much more hopeful than when she was first diagnosed. “I now understand the disease better and am connected to an incredible community of supporters,” she writes. I’m hopeful because I’ve found a new purpose – admittedly one I never wanted – and because I can use the spotlight to help and empower others. And I have hope that our whole family can find joy in the little things.”
Her husband’s diagnosis also made her more compassionate, Heming-Willis said. She notices “that I have more space for what others are going through. I feel both gratitude and sadness.” There is “a lot of power in being an advocate for this community.” “I want our children to see me standing together with others and fighting the stigma and isolation that such an illness can bring,” she continued. Since her husband’s diagnosis, the model has tirelessly provided information about the disease, raised awareness and advocated for other FTD sufferers.
Emma Heming-Willis is plagued by feelings of guilt
Nevertheless, the 45-year-old sometimes feels guilty. “I struggle with guilt because I know I have resources that others don’t,” she writes. “When I go for a hike to clear my head, I’m aware that other family caregivers can’t. When our family’s story gets media attention, I know there are thousands of untold stories, all of which need compassion and deserve concern.” It’s important to her to be an advocate for these families who don’t “have the time, energy or resources to speak for themselves.”