Like many carers before her, and countless others in her position, the wife of Bruce Willis – Emma Heming Willis – discovers the key to a more relaxed lie with her husband after he was diagnosed with Fronto Temporal Dementia.
Most of us have heard of Bruce Willis and many will have enjoyed his highly watchable performances in numerous films. The personification of the alpha male. Sadly, it seems that no one is immune to brain diseases. So, it was with this incredible man. With the disease, came frustration and anger and, yes, resentment too. In her book – The Unexpected Journey – Miss Emma Heming Willis describes in moving details what she experienced in the early stages of this new life:
Before I knew that Bruce’s brain was slowly changing thanks to FTD, we went through a period where we struggled with a lot of miscommunications and an inability to connect…. I felt as though I was banging my head against a brick wall and was often frustrated and confused. (p 255)
However, the more she learned about the disease taking over her husband’s brain and the more she adapted her conversational skills with him, Miss Heming Willis came to recognise those precious moments when they were able to be at one, if only for a brief moment:
When I realized that the changes in Bruce were caused by something beyond his control … I then understood that the kind, caring, and compassionate man I fell in love with was there the whole time. It was his disease that had started to take away the traits that made him him. (p 256)
It takes an awful lot of courage to come to terms with changes in a person’s behaviour, at any levels, caused by awful diseases of the brain that are, as yet, totally incurable. Beyond repair. It requires even greater resources of emotional, mental and physical energies to manage the day-to-day challenges of just living with such changes. As for contemplating that the person with the disease may still be the same in some way at some level in some dimension … the psychic task is gargantuan. All medical professionals tell us that people affected by these diseases ‘are gone’.
But what if … we look at this differently.
With dementia, you’re not with the person you once knew, but you can be with a new version of the person you’re caring for. I know this can be hard. For me, there are rare moments when the old Bruce emerges in that smirk, twinkle, smile, or gesture that makes me laugh like I used to. Those glimmers take me back in time. Ye as quickly as they come, they go…. Sometimes I think I’d prefer not to see those glimmers at all and instead embrace this new person. But those moments also remind me that Bruce is still here, and ultimately, I am grateful for every glimpse of him, no matter how brief and how painful it might be for me.
[1] Emma Heming Willis, 2025. The Unexpected Journey. London: Harper Element
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