LOS ANGELES, CALIFORNIA: As British model and entrepreneur Emma Heming stands by her husband, Bruce Willis, in the face of his frontotemporal dementia diagnosis, she has candidly revealed the emotional toll it has taken on her.
Heming admits to struggling with "guilt" not just as a devoted partner but as a voice for countless others silently grappling with similar challenges.
Emma Heming bears the weight of privilege
"I struggle with guilt, knowing that I have resources that others don't," Heming revealed in a heartfelt oped.
"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."
Her empathy extends to the untold stories of countless families who lack the time, energy, or resources to advocate for themselves. "It's important to be an advocate on behalf of those families who don't have the time, energy, or resources to advocate for themselves," she wrote in the op-ed for Sunday Paper.
Willis and Heming are parents to two children, Mabel 11 and Evelyn 9. In addition, Willis shares three children with ex-wife Demi Moore, Rumer 35, Scout 32, and Tallulah 29. Commending the family's resilience, Heming appreciated their ability to "find joy in the small things" and "coming together to celebrate all the moments life has to offer."
Emma Heming's journey with the Frontotemporal Dementia community
Amidst the challenges, Heming finds solace and strength in connecting with the wider frontotemporal dementia (FTD) community. The support she has discovered within this community has transformed her initial feelings of being overwhelmed into a sense of hope.
Learning about the disease and sharing experiences with others who understand has become a crucial part of her coping mechanism.
Heming's commitment to sharing their journey is rooted in a sense of purpose - an unexpected calling to empower others and bring attention to the realities of dementia.
"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," she claimed. By sharing her story, Heming hopes to create a sense where others will also "feel seen and understood."
