‘My worst nightmare’: Moment Bruce Willis learned terrifying truth
Bruce Willis's wife has broken her silence on the Die Hard star's battle with dementia, exposing the hidden struggles that tore their world apart.
As the wife of Hollywood hero Bruce Willis, with whom she shares two young daughters, Emma Heming Willis is now also his care partner, following his diagnosis with a form of dementia. In this edited extract from her new book The Unexpected Journey, Emma describes the moment of diagnosis: how it turned the couple’s world upside down, yet also gave direction.
Before I understood that Bruce’s brain was changing because of a disease, I was mostly just confused. Thank goodness I knew who he was at his core; if I didn’t, I don’t know that I would have been able to stay in our marriage.
I can’t pinpoint exactly when it started, but at some point, our relationship began to feel off. There were conversations that I recalled differently than Bruce did, and there seemed to be a lot of miscommunications between the two of us. The disconnect was subtle but happening more and more.
Eventually, my patience began to run thin. I found his behavior puzzling. But he didn’t mention anything was amiss and his doctors didn’t flag any health concerns with me, so I assumed everything must be okay.
Even if I did go to his doctor, what would I say? I thought. That I was noticing this abstract, intangible difference in my husband? Would they believe me or think I just needed a bitch-fest? (I later learned that a lot of partners/spouses feel this way and it prevents them from talking to the doctor.)
I couldn’t really put what I was seeing into words myself, so how could I tell someone else? On top of everything, I was too scared to reach out to other experts or specialists for support because, of course, I wanted to protect Bruce and our privacy.
To say it was a difficult, confusing, and lonely time is an understatement.
Although I was uncertain about what was going on, one thing was clear: This wasn’t typical Bruce behaviour.
Not only was he a high performing, high-functioning person, but when we first met, Bruce was the take-charge one in our relationship, and I was happy to follow his lead.
He made the plans and ran the ship of our lives. It’s something I found attractive about him from the very beginning.
While the things that made me suspect Bruce was “off” started so gradually I didn’t consider them symptoms, with more time, it got to the point where they were hard to ignore. I knew something was wrong.
Finally, I sought medical advice, and his doctor ordered a brain scan.
Earlier, I had done a deep dive into Google, the only place I could turn for answers because of my concerns about our privacy, and found that one of the best-case scenarios would be a benign tumor pressing against his brain.
My hope was that we were going to see the tumor on the scans, it would be removed, and we would go on with our lives.
Unfortunately, this was not our reality. The scans showed that parts of Bruce’s brain were changing, which was causing the language shifts and some of the behavior we were seeing.
In early 2022, we received a vague diagnosis of aphasia, a communication disorder that affects a person’s ability to process and express language. While it was better than having no answers at all, it wasn’t enough to explain the changes in Bruce’s behavior.
We had been in limbo for too long and the uncertainty took a toll. Chaos was building in our home, and life felt increasingly unmanageable. I realized that to get the right support for our family, I needed to understand exactly what we were dealing with.
There is no cure or treatment; all you can do is try to manage symptoms through medication.
In that moment, I wanted nothing more than for Bruce to take charge like he used to. I wished he could pull me close, wrap his arms around me, and say, “Emma, everything’s going to be okay. You worry too much.”
But there were no more soothing kisses on top of my head and no Bruce to help make my shoulders relax and my fear melt away. It felt like I was stepping into a new reality, uncharted terrain that I wasn’t ready for.
When I suspected something was “off” with Bruce but couldn’t put my finger on what it was, I went through every possible explanation in my head. Was there a problem in our marriage? Was it Bruce’s sleeping difficulties?
Maybe it was his hearing loss. During the filming of the first Die Hard movie in the late ’80s, there was a scene where he had to fire a gun underneath a table. When it was shot, oddly, Bruce wasn’t wearing any protective earplugs, and he lost a large percentage of his hearing in one ear.
When we first got together, this never posed a real problem. Years later, however, I began to notice him sort of check out if we were at a dinner party or meal with the entire family.
He would sit back and let everyone else do the talking without contributing very much.
Mind you, when we would get the family together, Bruce was usually the only man at a table full of women, with me, our two girls, and his three older daughters speaking a mile a minute and over each other with excitement.
Initially, I thought he was just letting us have our girl time to “yack it up,” as he would say, rather than trying to get a word in.
I assumed his hearing loss made it easier for him to melt into his seat with his hands clasped gently on his lap. But, in hindsight, that wasn’t the Bruce I knew.
Especially when it came to connecting with his daughters. Bruce was a family man at heart. Early on in our relationship and before we had children together, he wanted to spend as much time with his older girls as possible.
If we were traveling, he was always dying to return home to them, calling the feeling a “gravitational pull,” which always brought him back to his girls.
This was something I loved about him.
Today, I understand that his checking out at the table was likely due to cognitive overload and difficulty processing conversations, which is common in primary progressive aphasia (PPA), the variant of FTD that Bruce has.
It was an early symptom of his disease.
Many families spend years living with a lot of confusion around symptoms prior to a diagnosis.
From speaking to other care partners, I have learned how subtle (or not so subtle) symptoms of certain forms of dementia like FTD or Lewy body, for example, can rock a whole family system and destroy it. (This is not always the case with certain dementias such as Alzheimer’s, where symptoms like memory issues are more obvious and usually more of a straight line to a diagnosis. Each form of dementia is different, which is why it’s important not to lump them all together.)
For FTD in particular, in those early years, no one suspects the diagnosis because most people have no clue what FTD is.
So they assume their person is being rude, apathetic, withdrawn, depressed, irritable, impulsive, or reckless, or they lack empathy - an array of behaviors that seem like personal choices rather than symptoms of a disease.
This major shift in behavior, language, and/or personality is frustrating, confusing, and can ruin relationships. FTD is not your doctor’s first or second thought either. Often FTD is misdiagnosed as a midlife crisis, depression, or bipolar disorder, to name just a few, because the symptoms can apply to all those conditions.
Most of us don’t know this or anything else about FTD, and all you see and experience is that
something is incredibly different with your loved one.
Also, if you’re like I was, you may feel strange bringing these things to the attention of your partner’s doctor, especially if that doctor is not your own.
Initially, I was uneasy going over Bruce’s head in that way. Something about the morality of it didn’t sit well with me.
If you feel that way, too, consider the advice of Yolande Pijnenburg, PhD, a professor of young-onset dementia at Alzheimer Center Amsterdam at Amsterdam University Medical Center in the Netherlands: “If your feeling gets stronger that this change in behavior is something that person can’t help, you have to trust that feeling because you’re actually acting to benefit your partner.”
Subtle changes due to dementia can go on for years, and all that time your person looks fine on the outside.
Even more bewildering is that there might never be a moment when he or she expresses concern to you or to a doctor that something is wrong. There’s actually a medical term for this: anosognosia. According to the Cleveland Clinic, anosognosia is a “condition where your brain can’t recognize one or more other health conditions you have.
It’s extremely common with mental health conditions like schizophrenia and Alzheimer’s disease. This condition isn’t dangerous on its own, but people with it are much more likely to avoid or resist treatment for their other health conditions.”
So if your person isn’t raising his or her hand for help, it’s easy to think that maybe everything is okay. This makes those early stages confusing, and it’s why doctors can easily overlook FTD and other early-onset dementias again and again.
This delay can be a catastrophe, as families can be completely derailed and dismantled - emotionally and financially - by the personality changes and shifts in their loved ones from their brains quietly dying.
Over time, I began to suspect that the issue wasn’t Bruce’s hearing or a rocky patch in our marriage, and that instinct made me realize that we should go to the doctor. As a result of this experience, I can’t stress enough the importance of trusting your gut when you know something is wrong.
Even if test results come back “normal” or a doctor dismisses your concerns, don’t stop pushing for answers.
If your doctor isn’t listening, find one who will. You know your person best. Keep advocating for them and yourself.
With an actual diagnosis of FTD, I was able to get specific and tailor our next steps to Bruce’s needs, which gave me a sense of control and made this journey more manageable. Having the right
diagnosis also helped me plan for today and the future. It helped me grasp what FTD does, how it progresses, and what life might look like going forward. It was no longer an abstract idea or a scary, blurry outlook.
Well, it was still scary, but the volume was turned down a little bit. Now I had direction.
I felt some relief in finding out that Bruce had aphasia and then a year later that he had FTD. I finally understood that those crazy marital issues were not Bruce. Neither were those off moments and subtle shifts in his personality.
They were the result of his brain being dismantled, taking part of the husband I knew and loved with it.
You weren’t doing any of this on purpose, I thought as I looked over at him. You were there the whole time.
The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path by Emma Heming Willis will be published by HarperCollins in Australia on September 16.
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Originally published as ‘My worst nightmare’: Moment Bruce Willis learned terrifying truth
