In an emotional essay, Emma Heming has shared her ‘tangled web of grief’ over Bruce Willis’ dementia at Christmas.
The Die Hard actor, 70, was diagnosed with frontotemporal dementia in February 2023.
Since then, his loved ones – including ex-wife Demi Moore and their three daughters – have shared updates, whilst also advocating for more awareness of the neurodegenerative condition.
Last month, daughter Rumer revealed that while the star is doing well for someone with his condition, he does not always recognise her.
Emma has now written about how their yuletide has changed since his diagnosis, in an essay titled The Holidays Look Different Now.
She recalled how Bruce loved Christmas, making pancakes and playing in the snow with the kids, but now he was no longer in the ‘centre of it all’.
‘The holidays have a way of holding up a mirror, reflecting who we’ve been, who we are, and what we imagined they would be,’ she said.
‘When you’re caring for someone with dementia, that reflection can feel especially poignant.’
For Emma, traditions that once ‘felt effortless’ now require excessive planning as ‘uncomplicated joy may arrive tangled in a web of grief.’
‘There can still be warmth,’ she continued. ‘There can still be joy. I’ve learned that the holidays don’t disappear when dementia enters your life. They change.’
Emma and the Pulp Fiction icon married in 2009 after two years together, with Bruce saying it was love at first sight.
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.
However, the former model revealed she had considered divorce before his diagnosis, as they no longer aligned on issues they once did.
Unaware of his brain condition, their marriage was falling apart, but Emma’s intuition told her to speak to doctors rather than leave him.
The couple share two daughters, Mabel, 13, and Evelyn, 11, as well as being a blended family with Demi and Bruce’s three daughters, Rumer, 37, Scout, 34, and Tallulah, 31.
Emma continued: ‘Grief doesn’t only belong to death. It belongs to change and the ambiguous loss caregivers know so well. It belongs to the realisation that things won’t unfold the way they once did.
‘It belongs to the absence of routines, conversations, or roles that were once so familiar you never imagined them ending.’
Bruce was moved into a care facility as things became harder to manage at home, but the family remain incredibly close-knit.
Emma spends breakfast and lunch with the Fifth Element star every day, previously sharing that she doesn’t think he fully comprehended his diagnosis.
‘Dementia doesn’t erase those memories,’ she concluded in her essay. ‘But it does create space between then and now. And that space can ache.’
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