Ever since it became known to the world that Bruce Willis was suffering from frontotemporal dementia (FTD), a rare type of dementia that affects language, personality, and behavior, Emma Heming Willis has been a brave advocate not only for others suffering from the disease, but for the millions of caregivers who are struggling worldwide.
This year, the Hidden Heroes Campaign, an organization that honors military caregivers, recognized everything Emma has done to bring awareness to those who devote their lives to caring for others. They awarded her the Tom Hanks Caregiver Award.
Emma sat down with “Today” to give an update on Bruce and discuss the incredible bond that all caregivers share.
Despite Unkind Disease, Bruce Willis Is ‘Doing Really Well’
Emma and the rest of Bruce’s family are often asked about Bruce’s health, hoping for some positive news in his battle with FTD. Emma admitted to “Today” host Savannah Guthrie that it was “Such a loaded question, it’s hard to answer.”
“I mean, honestly, today, great,” she continued. “He is surrounded by love and care, and he is doing really well with an unkind disease.”
Emma has been as honest and forthright as possible about his health. While he is currently stable and in good physical health, she’s prepared herself for the worst-case scenario: his death.
“That is the anxiety, right?” She told “USA Today” at the EndWell Summit in November. “Like, when will the next shoe drop? But I know that when/if it does, we’ll be ready.”
Caregivers Find Comfort in Shared Experience: ‘I Feel Like I’m Home’
“For me, I feel like I’m home,” Emma said about meeting other caregivers and the bond they share. “There is an instant sort of comfort level that I have never really received anywhere else.”
“We really do truly understand what each one is going through. In a world that I think today is so disconnected, there is something truly meaningful and beautiful about the connection between a caregiver and a caregiver.”
On September 9, Emma’s book, “The Unexpected Journey,” was released. Her goal was to give guidance and information to other families and caregivers going through what she’d gone through. She had previously spoken about how alone she felt navigating Bruce’s diagnosis and the world of caregiving.
“When we received Bruce’s diagnosis, we left that appointment with no hope, no roadmap, there was nothing,” she told “Good Morning America” in September. “To leave with no support, no guidance. And it’s not just happening to me, it’s happening to so many.”
“Over the years, I’ve been able to put together these incredible specialists and experts around our family, and that is how ‘The Unexpected Journey’ was born,” she added.
