Emma Heming Willis is opening up about being a caregiver for her husband Bruce Willis.
In an essay she penned for Maria Shriver’s Sunday Paper, Heming Willis writes: “In the weeks leading up to our February 2023 announcement that Bruce was living with frontotemporal dementia (FTD), I struggled with whether and how to come forward with this difficult chapter in our story.”
“Yet after our family shared the news, I felt like I could breathe,” she continues. “Suddenly, I wasn’t alone anymore and I could seek the support Bruce, myself, and our family so desperately needed.”
According to Johns Hopkins, “Frontotemporal dementia (FTD), a common cause of dementia, is a group of disorders that occur when nerve cells in the frontal and temporal lobes of the brain are lost. This causes the lobes to shrink. FTD can affect behavior, personality, language, and movement.”
In her essay, Heming Willis reflected on some of the things she has learned and experienced since her husband’s diagnosis.
“I struggle with guilt, knowing that I have resources that others don’t. 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,” she writes. “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.”
In spite of it all, she says “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. I have hope in having found a new purpose—admittedly one I never would have gone looking for—using the spotlight to help and empower others,” she continues. “And I have hope in how our entire family can find joy in the small things, and in coming together to celebrate all the moments life has to offer.”
The couple married in 2009 and share two young daughters.
It was announced last year that Willis would be stepping away from his career due to cognitive issues.
