Emma Heming Willis has revealed that she initially attributed the early signs of her husband Bruce Willis’s cognitive decline to hearing loss he sustained while filming the 1988 action classic “Die Hard.”
In her new book, “The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path,” the former model shares her personal experience as a caregiver for her husband, who has since been diagnosed with frontotemporal dementia (FTD). The book also serves as a guide for others navigating similar challenges.
“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,” Heming Willis, 47, explained. “That took out a huge percentage of his hearing.”
This long-standing injury became a convenient explanation for what she later realized were early symptoms of a more serious condition. “I thought maybe that’s why we weren’t communicating as well as we used to, because of his hearing,” she reflected.
In her book, Heming Willis notes that while his hearing loss never posed a significant problem early in their relationship, she eventually noticed her husband becoming distant and withdrawn, particularly during family dinners. At the time, she assumed he was simply letting his daughters dominate the conversation.
However, other alarming signs began to emerge. His childhood stutter, which he had learned to manage throughout his career, started to return. “Our relationship just felt very different,” she said. “Our conversations and our connection just felt off. It was really hard for me to understand why or what was happening.”
Despite Willis appearing physically healthy, Heming Willis felt intuitively that something was wrong. “I just knew in my gut that something else was going on,” she said, emphasizing the importance for caregivers to trust their instincts and advocate for their loved ones with medical professionals.
In 2022, the Willis family announced that the actor had been diagnosed with aphasia, a condition affecting speech. Nearly a year later, they shared a more specific diagnosis of FTD, a progressive neurological disorder that impacts behavior, language, and movement.
Following the diagnosis, Heming Willis recalled feeling profoundly isolated, having been given little more than a pamphlet for guidance. This experience fueled her desire to help others by sharing her story and the resources she has discovered.
“I love and care for my husband so much,” she said. “But I think what has also helped me is the advocacy part of all this, being able to use my voice to help somebody else. That has been really comforting to me.”
Heming Willis emphasizes that despite the disease’s progression, their life is still filled with moments of joy. “He is so present today,” she shared. “He is not thinking about yesterday or what’s going to happen later. We have joy. Our lives are not over. There is still so much joy and so much laughter that we share with Bruce.”
By sharing her private journey, she hopes other caregivers will feel less alone. “I’ve come a long way,” she admitted. “I never thought since receiving Bruce’s diagnosis that I would find laughter again. I’m still learning. But I’m doing the best that I can.”
Source link
