In March 2022, Bruce Willis‘ family announced that the actor would be retiring due to an aphasia diagnosis – a language disorder that affects a person’s ability to communicate.
Since then, in early 2023, the family revealed that Bruce’s condition had “progressed” into frontotemporal dementia.
But Bruce’s family certainly is making the best of a bad (nay sad) situation.
Bruce and Emma at the New York premiere of Glass in 2019.
Emma Heming Willis, Bruce’s wife, has recently opened up about guilt in the midst of being a caregiver for her husband. In an op-ed Emma penned for Maria Shiver on November 11, she touched on the lessons she is learning amid her husband’s diagnosis.
“I struggle with guilt, knowing that I have resources that others don’t. 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,” Emma wrote.
“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.
“At the same time, I see that what I share matters to others who may be struggling, and in a small way makes them feel seen and understood.”
Emma has been transparent about her husband’s health journey since she first publicly shared his diagnosis. In May 2023, she took to Instagram to talk about her experience of dealing with her husband’s deteriorating state in the hopes of shining a light on how tough being a caregiver can be.
Speaking in depth with certified dementia practitioner Ty Lewis, Emma said:
“I think it’s important to advocate for caregivers because we carry such a heavy load.”
Emma then spoke about how she regularly worries about experiencing ‘caregivers burnout’ and how some of Bruce’s friends weren’t visiting, likely because they don’t know how to deal with the situation.
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“Maybe people are nervous about coming around. They’re not used to seeing the person they knew in a different state. That can get a little tricky,” Emma said.
“Once they get this diagnosis, people tend to write them off.”
The 44-year-old model then asked Ty what advice she had for caregivers everywhere.
Emma speaking to Ty about caregiving during an Instagram Live.
“A lot of times when our loved ones get diagnosed, we focus on the diagnosis and think this is the end… This is not the end, this is a new chapter,” Ty, whose mother suffers from Alzheimer’s disease, said.
Even if you feel like a failure. Get back up. Do it again,” Ty continued.
Emma then candidly shared how she was doing in light of Bruce’s condition and being his primary caregiver.
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“I have times when I’m in it to win it and times when I can’t focus due to life… It’s so easy to get into the doom and gloom of what went wrong so it’s really about flipping the script and changing that self-talk.”
“I try to start my day and end my day in gratitude, things I want to make time for in my day, and when I go to bed, I think of three things I got right,” Emma said.
“I have my moments. It just depends. [I’m] hanging in there, doing the best I can. Turning my pain into purpose.”
Emma once again advocated for caregivers in September 2023 during an appearance on the US Today show.
“Dementia is hard. It’s hard on the person diagnosed. It’s also hard on the family… When they say this is a family disease, it really is,” Emma said before adding that she prefers to refer to herself as a “carepartner” rather than a ‘caregiver’ or ‘caretaker’.
“He [Bruce] is my partner, so I’m his carepartner.
“I think as a carepartner, it’s so important to be able to ask for help and support… It’s important for carepartners to look after themselves so that they can be the best carepartner for the person that they’re caring for,” she continued.
Emma also gave an update on Bruce’s condition. When asked by Today host Hoda Kotb whether he’s aware of his disease, Emma replied, “Hard to know. Hard to know,” visibly getting emotional.
She then went on to say that despite the “grief and sadness,” she tries to stay positive and encourages her and Bruce’s daughters, Mabel and Evelyn, to do the same.
“Bruce would really want us to be in the joy of what is; he would really want that for me and our family.”
These comments about ‘being candid while also staying positive’ were echoed by Bruce’s daughter Tallulah – who he shares with ex-wife Demi Moore – when she appeared on The Drew Barrymore Show in November 2023.
“On [the] one hand, it’s who we are as a family. But also, it’s really important for us to spread awareness about FTD because there’s not enough information out there.
“The bigger version of what I’m trying to do [is] if we can take something that we’re struggling with as a family, and individually, and help other people to turn it around, to make something beautiful about it, that’s really special for us.”
When asked by Drew how she’s dealing with her dad’s deteriorating condition, Tallulah replied, “A really beautiful way for me to heal through this is becoming like an archaeologist to my dad’s stuff, his world, his little trinkets and doodads.”
And when asked how Bruce is doing as of November 2023, Tallulah shared, “He is the same, which, I think, in this regard I’ve learned is the best thing you can ask for. I see love when I’m with him, and it’s my dad and he loves me.”
