Bruce Willis’ wife Emma Heming Willis has reflected on the grief she feels as she and her family navigate her husband’s dementia.
Emma, Bruce and their family have been facing the challenging reality of the Die Hard actor’s declining health in the wake of his diagnosis of frontotemporal dementia (known as FTD) and the holidays, she says, are particularly difficult.
In a new post on her blog, Emma, 47, admitted that “the holidays look different now” and while there is still space for joy, that joy now coexists with grief.
“Traditions that once felt somewhat effortless require planning – lots of planning. Moments that once brought uncomplicated joy may arrive tangled in a web of grief,” she wrote.
“I know this because I am living it. Yet despite that, there can still be meaning. There can still be warmth. There can still be joy. I’ve learned that the holidays don’t disappear when dementia enters your life. They change.”
Emma continued to reflect on holidays before Bruce’s diagnosis, where he was “at the centre of it all”.
“He loved this time of year – the energy, family time, the traditions. He was the pancake-maker, the get-out-in-the-snow-with-the-kids guy, the steady presence moving through the house as the day unfolded,” she continued in her blog post.
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Now, that dynamic has changed and, while she remains grateful to have her husband by her side still, Emma admits she is grieving the version of him that has been lost.
“I find myself, harmlessly, cursing Bruce’s name while wrestling with the holiday lights or taking on tasks that used to be his,” she wrote.
“Not because I’m mad at him, never that, but because I miss the way he once led the holiday charge.
“Yes, he taught me well, but I’m still allowed to feel annoyed that this is one more reminder of how things have changed.”
Emma has documented her experience navigating Bruce’s diagnosis and the realities that have come with the slow decline of his health in an effort to advocate for caretakers in a similar position.
While Bruce is still alive, Emma admits that the family is grieving all that they have already lost.
“Grief doesn’t only belong to death. It belongs to change and the ambiguous loss caregivers know so well,” she wrote.
“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.”
While things may be different and at times challenging, Emma says her family will still embrace the holiday spirit.
“There’s a misconception that if the holidays aren’t what they once were, they must be hollow. But meaning doesn’t require everything to stay the same. It requires connection,” she wrote.
“This holiday season, our family will still unwrap gifts and sit together at breakfast. But instead of Bruce making our favourite pancakes, I will.
“There will be laughter and cuddles. And there will almost certainly be tears because we can grieve and make room for joy. The joy doesn’t cancel out the sadness. The sadness doesn’t cancel out the joy. They coexist.”
In early 2023, Bruce’s family revealed the actor was diagnosed with FTD.
FTD is an umbrella term for a group of brain disorders that primarily affect the frontal and temporal lobes of the brain.
These areas of the brain are generally associated with personality, behaviour and language.
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