Bruce Willis’ wife relives the ‘bleak’ moment doctors told her of his dementia diagnosis

Bruce Willis’ wife Emma Heming is opening up about the devastating day she learned her husband was facing a future with dementia — a moment she describes as both heartbreaking and traumatic.

The Die Hard legend, 70, was officially diagnosed in 2023 with frontotemporal dementia (FTD), a brutal disease that erodes personality and language skills. 

He has since retired from Hollywood, leaving Emma to steer their family through an unthinkable new reality. 

The couple share two daughters — Mabel, 13, and Evelyn, 11 — and have been married for 16 years.

Just last week, Emma admitted her ‘hardest decision’ was moving Bruce into a second home, where he is surrounded by a full-time care team as his condition worsens.

Now, she’s pulling back the curtain on the moment she first heard the words that changed everything back in November 2022.

Bruce Willis ’ wife Emma Heming is opening up about the devastating day she learned her husband was facing a future with dementia — a moment she describes as both heartbreaking and traumatic

The Die Hard legend, 70, was officially diagnosed in 2023 with frontotemporal dementia (FTD), a brutal disease that erodes personality and language skills; (seen in 2017)

‘I’m sure the doctor was explaining what FTD is, [but] I couldn’t hear a single thing,’ she told People on Friday. 

‘I had pins and needles going through my body. My ears were wafting. I’m sure he was feeding us information but all I heard was just, “Check back in and here’s a pamphlet”.’

While the diagnosis finally explained Bruce’s troubling behavioral changes, Emma says she was left shaken by the lack of direction or support.

‘I was grateful to get to a diagnosis, but there is no cure for this disease, and being sent on our way with no support, no nothing was really traumatic,’ she admitted. 

‘It’s not just happening to us. This is how many people are receiving their diagnosis.’ 

Like millions of Americans facing dementia in their families, Emma found herself without a clear path forward after Bruce’s diagnosis. 

With little guidance from doctors, she turned to her own research.

‘I ended up searching the web to figure out what to do,’ she admitted.

‘I’m sure the doctor was explaining what FTD is, [but] I couldn’t hear a single thing,’ she told People on Friday; ‘I had pins and needles going through my body. My ears were wafting. I’m sure he was feeding us information but all I heard was just, “Check back in and here’s a pamphlet”‘; (pictured in 2018)

That period, she recalls, was profoundly isolating and ‘bleak.’

‘Early on, life felt very dark, very one-note of just grief and sadness,’ she explained.

As the primary caregiver, Emma says she felt overwhelmed — balancing Bruce’s needs, safeguarding his privacy, and raising their two young daughters largely on her own.

Eventually, she began carving out a way forward. 

She leaned on medical experts, connected with others in similar situations, and found a sense of purpose in speaking out. 

‘Early on I was too scared to say anything to anyone. It felt like what was happening was only happening to us,’ she said. 

‘I realized it would be beneficial to talk about it and raise awareness so people get to the doctor sooner, can be diagnosed sooner, get into clinical trials.’

That hard-won perspective has now shaped her new book, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path, written as a guide for families navigating neurodegenerative disease. 

‘I was grateful to get to a diagnosis, but there is no cure for this disease, and being sent on our way with no support, no nothing was really traumatic,’ she admitted 

‘I wrote the book that I wish someone had handed me on the day we received the diagnosis,’ she explained.

‘Caregiving is hard, and there are many people doing it with little to no support … The only way I can get through this is to help someone else feel less alone.’

Her remarks come after a family insider informed the Daily Mail that Bruce is ‘going downhill fast’ to the point he ‘doesn’t know some faces’ anymore.

Bruce’s blended family has rallied around him amid his illness, including his ex-wife Demi Moore and their daughters Rumer, 37, Scout, 34, and Tallulah, 31.

The Daily Mail source said Bruce’s daughters are ‘are all spending as much time with him as they can,’ adding: ‘He lights up when he sees his children.’ 

Emma recently revealed that the ‘hardest decision’ she took while looking after him was moving him into a separate one-story house away from their primary residence.

He lives there with a full-time care team, while Emma brings their daughters Mabel and Evelyn to visit him ‘a lot,’ including for breakfast and dinner.

‘Bruce would want that for our daughters,’ said Emma. ‘He would want them to be in a home that was more tailored to their needs, not his needs.’

‘Early on, life felt very dark, very one-note of just grief and sadness,’ Emma explained 

The couple made the revelation during a joint ABC special with Diane Sawyer entitled Emma and Bruce Willis: The Unexpected Journey.

Days after the broadcast aired, Emma posted to Instagram saying she had been criticized online for moving Bruce into a separate house.

She argued she had been judged ‘quickly and unfairly,’ saying viewers were split between ‘people with an opinion versus people with an actual experience.’

During the Diane Sawyer special, Emma explained: ‘Bruce is still very mobile. Bruce is in really great health overall, you know. It’s just his brain that is failing him.’ 

She added: ‘We have a way of communicating with him that is just a different, a different way, but I’m grateful. I’m grateful that my husband is still very much here.’