Emma Heming Reveals Why She Feels ‘Guilt’ As Bruce Willis Struggles With Dementia

Nov 17, 2023

Bruce Willis is one of the most legendary Hollywood actors of all time. He is most famous for his roles in action films, including the "Die Hard" franchise, as well as notable roles in "Pulp Fiction," "Armageddon" and "The Sixth Sense," among many other films. During his nearly 40-year career, Bruce showed off quite a diverse set of talents and range in a variety of genres across numerous films and television shows. 

After a high-profile split from his first wife, Demi Moore, in 2000, Bruce found it hard to believe he would ever find love again. However, this all changed when he met model Emma Heming. In 2009, Bruce revealed that it only took one date for him and Heming to fall in love with each other. 

“We went on one date, on the Friday before Emma was getting ready to move back to New York, and then we fell mad crazy in love,” he said. 

And ever since, Bruce and Heming have been inseparable. Bruce and Heming tied the knot in 2009 and went on to welcome two daughters. Heming is also a stepmother to Willis' three daughters from his marriage with Moore. The big blended family gets along well, regularly joining each other for family events or celebrating milestones publicly on social media.

However, tragedy struck when Bruce's family announced he was retiring from acting in March 2022 after being diagnosed with aphasia. As his primary care partner, Heming has been vocal about the challenges. 

Since then, Heming has given the occasional update on her husband’s condition. However, on Oct. 2, 2023, she took to Instagram to divulge the disrespectful comments doctors said about Bruce’s health diagnosis.

In May 2023, Heming shared a video of a powerful conversation she had with certified dementia consultant Ty Lewis as they discussed the challenges of caring for a loved one with memory loss. Heming’s husband Bruce was diagnosed with frontotemporal dementia in early 2023, and she immediately sought guidance on how to navigate the heavy load of caring for someone with a medical condition to avoid having caregiver burnout.

During the video chat on Instagram, Heming opened up about the tendency for caregivers to “over function” while everyone around “under functions.” She admitted she sometimes struggled to ask for help from others and delegate tasks. 

But Lewis provided valuable advice and suggested that Heming allow members of her community to step in and assist with certain responsibilities. For instance, she could let other people drive Bruce to his doctor's appointments or spend time with him while Heming focused on self-care. 

The mom-of-two also shared the difficulty of handling friends or relatives who felt unsure about interacting with her husband because of his condition. Heming acknowledged that seeing someone they knew in a different state could be “tricky” for people who were unfamiliar with the condition.

In March 2022, Heming and the rest of Bruce's family announced his forced retirement from acting due to aphasia, a language disorder that profoundly affected his ability to communicate effectively. However, in early 2023, Bruce's condition took a turn for the worse and turned into frontotemporal dementia, a degenerative brain disorder that impacts the frontal and temporal lobes of the brain. Some of the symptoms of this condition include personality changes, speech difficulties and motor or muscle impairments, according to the Alzheimer's Association.

The complexities of managing Bruce’s disease underscored the growing challenges of becoming his caregiver. To maintain a positive mindset, Heming discussed her daily practice of starting the day with gratitude and focusing on her goals and priorities. She emphasized the importance of not dwelling on negative thoughts or the challenges they face. She also immersed herself in other activities when she was not caregiving.

On her Instagram account, Heming has made it public that she has been taking part in raising awareness of frontotemporal dementia. 

“My hope is you will learn and take away something new and helpful from this week. I’m here to let the next family know that you are not alone and that there is understanding and hope within our strong FTD community 🩵,” she shared in a series of Instagram posts. 

On Oct. 2, 2023, Heming took to Instagram to discuss some frustrating comments she received regarding her husband’s health condition. In the video, she expressed feeling “annoyed” by the way doctors and the media speak about dementia. “They’ll say ‘Alzheimer’s and other dementia,’ so FTD is the ‘other dementia’ and let me tell you something about that disease. It is real, it is out there and it will bring you to your knees.”

Heming continued, "I think that it is an absolute disservice and absolutely disrespectful for these 'other dementias' to be put in that category. I think it's really important for us to know what these diseases are like vascular, like Lewy body, like FTD.”

Heming added that she did not want to see FTD and other forms of dementia “swept under the rug anymore.”

She shared in the video’s caption:

“Dementia effects so many of us and our families. It’s not going anywhere. @laurenmillerrogen co-founder of @wearehfc stopped me dead in my tracks when I heard her say the other day, ‘The truth is we should all be thinking about this whether it’s in your family history or not. Everyone with a brain is at risk for dementia.’ So I’ll be here continuing my efforts for my family and yours. You coming? 🙏🏽💞.”

Heming further shared how Bruce’s diagnosis has affected her in a self-written essay for Maria Shriver’s Sunday Paper. She spoke about the importance of community and how it had helped her experience compassion and relief.

The model also revealed that she “struggled with guilt” because she enjoys the access others in her situation don’t.

“I struggle with guilt, knowing that I have resources that others don’t,” she shared. “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.” 

Nevertheless, she realized that her advocacy was helping others who previously felt unseen. 

“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. 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,” she continued.  

She also shared a message on Instagram on Aug. 14, 2023, encouraging caregivers to take care of themselves so they can take care of their loved ones better.

How do you think Emma Heming is handling caring for Bruce Willis while keeping his fans up to date? Have you been in a similar situation with her? Did you also struggle with feelings of guilt, and how did you deal with it? Let us know, and pass this on to your family, friends, and other Bruce Willis fans!