Emma Heming openly shared that she sometimes feels guilty about the privileges she has while supporting her husband, Bruce Willis, through his dementia. In an article for Marie Shriver’s Sunday Paper, she admitted, “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 further explained. “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.”
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Heming tries to help other families
Heming, 45, went on to express about discovering a sense of purpose in inspiring and supporting others by recounting her family’s story. “I see that what I share matters to others who may be struggling, and in a small way makes them feel seen and understood,” the model expressed.
“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 immense sadness echoed in theirs.” The mother of two daughters, Mabel, 11, and Evelyn, 9, with Willis, further emphasized her commitment to “advocate” for “families who lack the time, energy, or resources to advocate for themselves.”
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‘I understand this disease more now’
Heming further opened up about how much she understands the disease now than she did before. “I have so much more hope today than I did after Bruce was first diagnosed,” Heming penned, adding, “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 continued. “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.”
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Bruce Willis struggles with frontotemporal dementia
In March 2022, the family of the “Die Hard” star announced that he was leaving acting due to an aphasia diagnosis, a neurological disorder affecting language and communication. A year later, the Willis family revealed that the actor’s condition had advanced to frontotemporal dementia.
“While this is painful, it is a relief to finally have a clear diagnosis,” the family stated on the Association for Frontotemporal Degeneration website. “FTD is a cruel disease that many of us have never heard of and can strike anyone. For people under 60, FTD is the most common form of dementia, and because getting the diagnosis can take years, FTD is likely much more prevalent than we know.”
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