Why Bruce Willis’ Wife Emma Heming Struggles with ‘Guilt’ as His Caregiver

Emma Heming Willis has opened up about the guilt she’s been feeling since her husband, Bruce Willis, was diagnosed with frontotemporal dementia (FTD) in February.

In a self-penned article for Maria Shriver’s Sunday Paper, the model shared how fortunate she is as a caregiver to have access to certain doctors and medical professionals that others may not have.

“I struggle with guilt, knowing that I have resources that others don’t. When I can go hiking to clear my head, I keep in mind that not all care partners can,” Emma wrote.

“When what I share about our family’s journey gets media attention, I know there are many thousands of untold, unheard stories out there, and every one of them deserves compassion and care,” she continued. “At the same time, I see that what I’m sharing is important to others who may be struggling, and in some small way it makes them feel seen and understood.”

Emma Heming and Bruce Willis attend the 2017 Room To Grow Spring Benefit at Guastavino’s on April 5, 2017 in New York City.

Noam Galai/WireImage

Emma Heming Willis says this podcast was her ‘lifesaver’ after Bruce Willis’ FTD diagnosis

She added: “I want people to know that when I hear from another family affected by FTD, I hear our family’s same story of grief, loss and overwhelming grief echoing in theirs. It’s important to me to be an advocate on behalf of those families who don’t have the time , energy or resources to advocate for themselves.”

In the article, Emma also explained how one of the lessons she’s learned on this ongoing journey is the importance of community. At first, she struggled with how to go public with Bruce’s diagnosis, she said. However, after sharing the news, she said she felt relieved.

Never miss a story — sign up for PEOPLE’s free daily newsletter to stay up-to-date on the best PEOPLE has to offer, from celebrity news to compelling human interest stories.

“Suddenly I was no longer alone and could seek the support that Bruce, I and our family so desperately needed,” Emma wrote.

“With a certain diagnosis, you have the opportunity to find community,” she continued later. “You can immediately connect with people who understand your story. You don’t even have to explain yourself. The people I’ve met and interviewed in the FTD community have so much compassion and are so determined to make things better for the next family.”

Emma Heming Willis and Bruce Willis attend the Cleveland Cavaliers vs. New York Knicks game at Madison Square Garden on February 4, 2017 in New York.

James Devaney/GC Images

Bruce Willis’ wife Emma Heming Willis says it’s ‘hard to know’ if he is aware of the FTD condition

After her husband’s diagnosis, Emma revealed that she became involved in raising awareness about FTD. Her inspiration came from watching people raise awareness for other causes close to their hearts, she said, adding, “I’m inspired and motivated by that fact.”

While Emma has come to terms with the fact that there is currently no cure or treatment for FTD — “Research is evolving,” she noted — her goal is to educate herself and others in an effort to find one.

“Talking with UCSF’s Dr. Bruce Miller — a pioneer in FTD research — and hearing him talk about what he calls ‘the obsession of researchers in this community with finding a treatment and a cure’ is inspiring,” she wrote. “The first disease-modifying treatments for FTD are currently in clinical trials and actively recruiting participants.”

Full of hope for an end to FTD, Emma added: “Now is the time for our community to take action to end this disease.”

Categories: Trends
Source: HIS Education