Bruce Willis’ wife, Emma Heming Willis, is explaining why it was important for her to share that the actor had been diagnosed with frontotemporal dementia.
The Willis family — including Heming Willis, ex-wife Demi Moore and his five daughters — released a joint statement in February confirming that the 68-year-old actor’s health had declined. Heming Willis and the rest of the family shared that Bruce Willis’ aphasia had progressed and he was given a more specific diagnosis of FTD, which affects communication skills.
Since then, Bruce Willis’ family has continued to update fans about his health and how they are handling the news. On Nov. 11, Heming Willis published an op-ed for Maria Shriver’s Sunday Paper where she shared the lessons she has learned about FTD as she takes care of her husband.
The 45-year-old model and entrepreneur revealed that she initially “struggled” to decide if she should publicly share the news about Bruce Willis’ health.
“Yet after our family shared the news, I felt like I could breathe,” she said in the op-ed. “Suddenly, I wasn’t alone anymore and I could seek the support Bruce, myself, and our family so desperately needed.”
She explained that making the public announcement allowed her to connect with the FTD community and other families who are learning how to live with the brain disorder.
Heming Willis also said her husband’s FTD has changed how she sees the world.
“I’ve become more compassionate,” she wrote. “I find that I’m able to hold more space for what others might be going through. I’m holding gratitude as well as grief.”
She continued, “There is power in becoming an advocate for this community. It’s something that I want our kids to see me face out loud, working with others, fighting through the stigma and isolation that a disease like this can bring.”
But, Heming Willis acknowledged that she is still struggling, especially with the “guilt” of knowing her family has access to resources that others do not.
“When I’m able to get out for a hike to clear my head, it’s not lost on me that not all care partners can do that. When what I share about our family’s journey gets press attention, I know that there are many thousands of untold, unheard stories, each of them deserving of compassion and concern. At the same time, I see that what I share matters to others who may be struggling, and in a small way makes them feel seen and understood,” she said.
At the end of her post, Heming Willis said she remains optimistic about her husband’s condition.
“I have so much more hope today than I did after Bruce was first diagnosed. I understand this disease more now, and I’m now connected to an incredible community of support,” she said.
She added, “As much as I grieve this experience daily—as I know so many others do—I also know that it has made me stronger than I ever thought possible.”
Heming Willis has become her husband’s caregiver. She spoke about taking care of the “Pulp Fiction” star during an interview with Hoda Kotb on TODAY in September.
The mom of two said that dementia truly is “a family disease” and it has impacted all of their lives, including their young daughters, Mabel and Evelyn.
She also said she is unsure if her husband realizes he is sick.
“It’s hard to know,” she shared.
During the interview, Heming Willis said she prefers to call herself a “care partner” instead of a caregiver.
“It’s important for care partners to look after themselves so that they can be the best care partner for the person they’re caring for,” she shared.
Tallulah Willis, one of Bruce Willis and Moore’s three daughters, recently discussed her father’s FTD, too. She appeared on the Nov. 8 episode of the “The Drew Barrymore Show” and described her father’s diagnosis as “really aggressive.”
Tallulah Willis echoed Heming Willis’ message that it is important for their family to spread awareness about FTD.
“The bigger version of what I’m trying to do (is) if we can take something that we’re struggling with as a family and individually and help other people to turn it around, to make something beautiful about it, that’s really special for us,” Tallulah Willis said.
She said she spends most of her time with her dad listening to music.
“I see love when I’m with him, and it’s my dad and he loves me,” she shared.
This article first appeared on TODAY.com. More from TODAY:
