Extract: Emma Heming Willis’ book on husband Bruce Willis and facing frontotemporal dementia

Bruce Willis and Emma Heming Willis pictured in 2018. Photo / Steve Granitz, WireImage

Emma Heming Willis never expected her husband, Hollywood actor Bruce Willis, would get sick. But when he was diagnosed with frontotemporal dementia (FTD), their future changed in an instant. In this extract from her new book, The Unexpected Journey, she shares the origins of their love story - and of his sickness.

Over the years, I fell more in love with Bruce. It wasn’t because of the big things, but rather all the little ones.

I loved how Bruce ordered food at a restaurant. He would get a wide variety of appetisers and entrees because he wanted us to try a bite of everything. I loved that anytime we got a bottle of wine with dinner, he’d have our waiter try a glass, too. “This way you’ll know how to describe it to the next customer,” Bruce would say. I loved that he understood the value of a good tip. “Always be generous,” he’d say. “I worked in the service industry and relied on those tips.” In fact, he was the most generous person I have ever met.

I loved that Bruce was a total gentleman. If I got up to use the bathroom at a restaurant, he would stand to see me out. And when I returned, he’d stand again to help me back into my seat. With Bruce, chivalry was not dead. I also loved how he supported the underdog. If a sports team was expected to lose, Bruce would put money on them.

I loved that he was so thoughtful. He’d get me flowers just because and leave Post-its around the house with love notes or words of encouragement.

I loved that Bruce always made sure I was comfortable and warm. Once when I was doing a photo shoot in New York, I called him during a break and mentioned that the studio was chilly.

Even though Bruce had experienced the milestones of childhood three times over with his older daughters, he embraced Mabel’s and Evelyn’s first words, first steps, first solid foods, and first days of school, among other moments like this, with the energy and excitement of a new father. Our girls felt seen, safe, and loved. “I’m much prouder of being a father than being an actor,” he’s been quoted as saying.

I loved how playful Bruce was with his daughters, especially our two young ones. If he came home and they were swimming in the pool, he’d dive in with his clothes on to get a laugh. His goal was to see our girls happy and having fun. All. The. Time. Let’s just say that if he’d been solely in charge of their lives, they would have had ice cream for breakfast and probably skipped a lot of school so they could sleep in and go to the beach or Disneyland.

Bruce was also our rock during their most traumatic moments.

When Mabel fell and broke her jaw the day before her sixth birthday, Bruce held her all the way to the ER and paced outside the operating room until the doctor was done. If he could have been inside supervising the surgery, he would have been.

I loved Bruce’s authentic passion for his craft and career. It was never driven by fame or money. Okay, well maybe it was a little. He did love a payday. But mostly, it was driven by a love of acting, singing, and playing the harmonica (a skill that he proudly taught himself). The fact that he could make a living from his dream job and provide a wonderful life for his family was a bonus.

I was in awe of the aura around Bruce, one that had nothing to do with his movie star status. It’s hard to put into words, but he seemed to emanate this unique magnetic energy. You could just feel it radiating off him. He would walk into a restaurant or down the street with people’s backs toward him and something would just make them turn around. It was wild to witness but I did, a thousand times over. When you were with Bruce, you felt you were in the presence of greatness, yet he was so simple and warm. He also had the best sense of humour. With Bruce, I was laughing from morning till night.

I loved that Bruce was a calm, sensitive, and tender Pisces. And yet, when necessary, he’d make his presence known and boundaries clear, especially when overzealous fans pushed me or the girls out of the way to get to him. Bruce didn’t raise his voice, but the authority and energy he brought to those moments was something to witness. A Bruce Willis glare would send chills up your spine. His demeanor was soft, but he drew hard lines when it came to protecting his family and our time together.

I loved Bruce’s strong self-confidence (where mine has always fallen short). He didn’t care what others thought of him. “When you lead with integrity and good intentions, you can’t let others’ opinions stop you,” he’d say. In less poetic moments, it was, “F*** ’em, Emma.” That’s an affirmation I still use today.

When they say opposites attract, it couldn’t be more spot‑­on than in our relationship. Bruce was a rule breaker, while I’m a rule follower. Bruce was unpredictable, while I like control, a plan, and certainty. Bruce kept me on my toes and showed me how to be nimble, to roll with life’s ups and downs. (Who knew how valuable those skills would become?) He also taught me to be spontaneous, something I still try to embrace for the sake of our young girls. While I’m a worrier, Bruce didn’t waste time on that. He always found joy in life. Bruce believed everyone deserved a trophy, while I’m not quite that soft and am not convinced participation alone warrants a prize. He taught me how to “live it up,” as he would say, and do so to the absolute fullest. Bruce was a leader, and I was very comfortable with his take-charge personality. From watching him, I started to develop confidence of my own.

Most of all, Bruce was my protector. My dream as a little girl was a picturesque life: marry Prince Charming, live in a house with a white picket fence, and have two kids. These things symbolised protection and security. And that was something Bruce gave me.

Bruce always made me feel safe when things felt hard. “Don’t worry, Emma. Everything’s going to be okay,” he’d say when I was stressed or worried about something. Then he’d pull me close, wrap me in his arms, and kiss the top of my head. I would relax my shoulders and melt because I believed him. I could trust him. And he was usually right.

I could go on and on about the things I loved about Bruce and our life together, but what stops me in my tracks is having to use the past tense when he is alive. What a heart-wrenching gut punch. It’s a quiet ache I carry daily.

The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path by Emma Heming Willis.

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 tumour pressing against his brain. My hope was that we were going to see the tumour 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 behaviour 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 behaviour. 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 realised that to get the right support for our family, I needed to understand exactly what we were dealing with.

Fast-forward to November 2022. We awaited the results of more tests. As we pulled into the parking lot of the neurologist’s office, my hope was that we would leave that appointment with a clear diagnosis.

When we arrived, the nurse showed us to a room and Bruce sat on the exam table. I settled in next to him, my hand resting on his leg. After a few minutes, the neurologist walked through the door. He greeted us and made a bit of small talk. Then he said, “Bruce has primary progressive aphasia, which is a variant of frontotemporal dementia, or FTD.”

From that moment on, I couldn’t hear a single thing. The doctor’s mouth was moving but no sound was coming out. Or maybe there was, but my ears were ringing. My hands tingled and I felt like I was freefalling.

My worst nightmare had come true.

Over the years, I’d heard horrendous stories about FTD. I’d also had doctors tell me about the various types of dementia, and when they mentioned FTD, they’d pause and say something along the lines of “Boy, that’s not the one you want.” Of course, I didn’t know the full scope of it or what those letters stood for; I just knew that all types of dementias were terrible, but I had it in my head that FTD was the worst of the worst.

I had gone into that appointment thinking it would give me some relief. And while, yes, it gave me a little, there was no relief in receiving a diagnosis I didn’t understand and couldn’t pronounce. The only resource I was given was a flimsy pamphlet that the doctor slipped into my hand as we were ushered out of the office with a “Check back in a few months.” What? That’s it? I thought.

After that appointment, a spiral of disturbing, unsettling thoughts filled my head. Still worried about our privacy, I took another deep dive into Google. Turns out Google’s a dark place to look up FTD, the most common (and some might say cruellest) form of dementia for people under the age of 60. 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.

Today, I am navigating this adventure as a single parent, and it’s scary. For someone who likes control and predictability, I am dealing with a disease that is anything but. No two cases of FTD or dementia are alike. I know that no two caregiving journeys are the same either. But what I also know is that we share similar emotions watching our loved ones fade in front of our eyes, a traumatic experience that leaves a hole in your heart.

Bruce is still a part of the fabric of my being and my guiding light, and I use the values we shared and the things he taught me to continue to make the best decisions for him and our family on his behalf and make each day the best it can be. I don’t always succeed, but I try. And I do so with my biggest supporter’s voice in my head: “You can do this, Emma,” he tells me. “And it’s going to be okay.”

The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path, by Emma Heming Willis. Published by HarperCollins.