Willis was a megastar actor who appeared in more than 100 films, including five Die Hard movies, The Sixth Sense and Pulp Fiction.
“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,” Heming Willis wrote in an extract published by News Corp.
“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.
Pictured in 2018 are Rumer Willis, Bruce Willis, Tallulah Belle Willis, Demi Moore, Marlene Willis (Willis’ mother) and Scout LaRue Willis. The family has maintained ties despite Willis and Moore divorcing 25 years ago.Credit: Getty Images For Comedy Central
“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 travelling, 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.”
In another extract, Heming Willis wrote about the painful decision to set up a separate home nearby for Willis to provide a more calm place where he could receive 24/7 care and how she broke that news to their daughters Mabel, 13, and Evelyn, 11.
“In fact, it’s still painful for me,” Heming Willis wrote in a quote published on Nine’s celebrity website, Honey.
“After all, this is my husband, and having him in another home was not part of the future we’d mapped out together. You really can’t dream this stuff up.”
Heming Willis also expresses her concerns about the lack of initial advice she was given after the diagnosis and highlights the advice of leading specialists to carers that they must take care of themselves, too.
That is a message that will resonate with the countless people who are suffering the physical and emotional exhaustion of caring for loved ones.
Tom Hanks, Melanie Griffith and Bruce Willis in the 1990 film, The Bonfire Of The Vanities. Credit: Fairfax Media
“I know that no two caregiving journeys are the same, but we are connected by the same unchosen thread. It’s not an easy path for you, your loved one or your family,” Heming Willis writes.
“But I’m here to let you know that you are not alone and, in time, you will find your footing and a way forward.”
The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path by Emma Heming Willis will be published in Australia by HarperCollins and is due out Tuesday, September 16.
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