Emma Heming Willis has revealed how her and Bruce Willis’ children are coping with his progressing illness.
The Die Hard actor, 70, was diagnosed with frontotemporal dementia in 2022, and his wife of 16 years, Emma, 47, stepped into the role of caregiver; an experience she is detailing in her new book The Unexpected Journey: Finding Hope and Purpose on the Caregiving Path.
The former model has been open about the impact Bruce’s diagnosis has had on their family’s life, sharing her experience over the years after they went public with the dire news in 2023.
Most recently, Emma spoke to Vogue Australia about how the couple’s daughters, Mabel and Evelyn, who are now 13 and 11, are coping with their father’s declining health and lucidity.
‘I think they’re doing well, all things considered, but it’s hard,’ she said.
‘They grieve, they miss their dad so much. He’s missing important milestones, that’s tough for them – but kids are resilient, [although] I used to hate hearing that because people didn’t understand what we were walking through.’
She added: ‘I don’t know if my kids will ever bounce back, but they’re learning and so am I.’
Emma was also forthcoming about her own grief in the new interview, explaining: ‘I’ve had to learn to walk alongside the grief. It’s always with me. I can’t shake it, but I’m going to breathe, and I’m going to be sad and all the feelings and emotions that I’m going to feel, but I am also not going to just allow it to be this one note of that.’
She continued: ‘My stepdaughter Scout quotes in the book, “Grief is the price we pay for loving someone so deeply.” And she’s right.’
Emma has been relentlessly advocating for more awareness for Bruce’s condition. She recently appeared on an episode of The Oprah Podcast to discuss the disease.
‘All things considered I think he’s okay,’ said Emma, admitting, ‘His brain is dying and to have to witness it is traumatic.’
She revealed that she started noticing something was wrong when Bruce’s childhood stutter returned, and they began to experience marital issues.
‘We weren’t aligning on things we used to,’ Emma said, explaining: ‘Our values didn’t seem to be matching anymore.’
‘100% thought about divorce, yes,’ Emma said. ‘I didn’t understand how our relationship was so connected, we were so enmeshed. And yet, all of a sudden things started falling apart.’
Emma said these struggles continued for a couple of years, before her intuition told her to visit the doctors.
‘I was just annoyed with him. I didn’t understand what was happening and the conversations we were having. We just weren’t aligned and I didn’t know why. He wasn’t raising his hand about anything, and I did contemplate divorce,’ she said.
Before his degeneration, Emma said Bruce was ‘very generous’ and as a husband he was ‘everything [she] could have dreamed of’.
‘He always put his children first, and I navigate my world through that lens today,’ she said.
Asked by host Oprah Winfrey whether Bruce understood his diagnosis in 2022 when they walked out of the doctors’ office with a pamphlet and the crushing news, she replied: ‘I don’t think so.’
Emma explained: ‘I don’t think it landed, and I’m grateful for that.’
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In an emotional sit-down interview with Diane Sawyer in September, she went even deeper into the difficulties of Bruce’s diagnosis, given that they also have two young children.
Emma said of her decision to move Bruce into a special care home: ‘I knew first and foremost, Bruce would want that for our daughters, you know, he wouldn’t want them to be in a home that was more tailored to their needs, not his needs.’
What is frontotemportal dementia?
Frontotemporal dementia, aka FTD, is a less common form of dementia usually diagnosed in people aged 45-65, whereas dementia mostly affects people over 65.
The degenerative disease primarily affects communication and behaviour, as opposed to memory, like other types of dementia.
According to the NHS, signs of frontotemporal dementia can include:
- Personality and behaviour changes – acting inappropriately or impulsively, appearing selfish or unsympathetic, neglecting personal hygiene, overeating, or loss of motivation
- language problems – speaking slowly, struggling to make the right sounds when saying a word, getting words in the wrong order, or using words incorrectly
- problems with mental abilities – getting distracted easily, struggling with planning and organisation
- memory problems – these only tend to occur later on, unlike more common forms of dementia, such as Alzheimer’s disease
There may also be physical problems, such as slow or stiff movements, loss of bladder or bowel control (usually not until later on), muscle weakness or difficulty swallowing.
Read everything we know about Bruce Willis’ frontotemporal dementia diagnosis.
Noise causes agitation for people with FTD, and Emma had to ‘isolate’ the family and stop having guests over before moving Bruce to a home where he could receive around-the-clock care.
‘It’s one of the hardest decisions I’ve ever had to make. Bruce is in really great health overall, you know. It’s just his brain that is failing him,’ she said.
Making the decision to then tell their daughters what was happening, Emma said she had ‘always been very open with them’, adding that sharing the diagnosis allowed them to ‘understand truly what’s happening.’
‘It is a house that is filled with love, and warmth, and care, and laughter. And it’s been beautiful to see that, to see how many of Bruce’s friends continue to show up for him, and they bring in life, and fun,’ she said.
Since Bruce’s diagnosis, his loved ones – including ex-wife Demi Moore and their three daughters Rumer, Scout, and Tallulah – have shared updates on his condition, whilst also advocating for more awareness of the neurodegenerative condition.
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