Bruce Willis, the legendary actor known for his iconic film roles like Die Hard, is currently waging a difficult battle against frontotemporal dementia (FTD). This affliction severely affects his mood and temperament. This year, his family made the diagnosis public, chronicling the pain, adaptation and life changes imposed by this life-altering disease.
Frontotemporal dementia typically presents as a loss of language, an aspect of the disease that has taken a tremendous toll on Willis. At first, all he did was go to work and play his life with his family and friends as before, until small signs started to trickle in. Family members observed how he began to zone out mid-conversation and withdraw from events he previously loved.
Emma Heming Willis, Bruce’s wife, has been an outspoken advocate of their journey since the diagnosis. She has penned a new book titled “The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path,” which details her experiences and challenges as a caregiver. In her reflections, Emma made it clear just how isolated she was during this time.
“I thought I had to do it alone as a caregiver, which meant lying awake at night to make sure Bruce Willis was safe,” – Emma Heming Willis
In light of Bruce’s deteriorating health, Emma made the decision to try to isolate her family from the social function. She had a genius idea to make him feel more comfortable. Although FTD has withdrawn Bruce from many things, rendering him unable to speak or read, he is physically mobile and very healthy otherwise.
Emma and her family offered a fascinating glimpse into their everyday experience, highlighting the incredible adaptation they’ve undertaken in the realm of communication. Despite many physical maladies, she never downplayed the psychological destruction caused by the malady on Bruce’s mental faculties.
“The language is going, and, you know, we’ve learned to adapt,” – Emma Heming Willis
The family had to come up with new methods to connect with Bruce, but learned to celebrate the little things that happen even when life is difficult. And Emma is right, each moment is brief, but saved and treasured.
“Not days, but we get moments,” – Emma Heming Willis
The reality of FTD is sobering. Dr. Bruce Miller, director of the UCSF Dementia Center, filled in some of the details about Bruce’s disease. As he described, individuals living with FTD can experience a deep and painful sense of disconnection from the world around them.
“The patient is incredibly unaware of what is happening,” – Dr. Bruce Miller
Dr. Miller shared with us how FTD affects emotional processing. He emphasized that major areas of the brain that manage pain experience and introspection begin breaking down astonishingly early in the course of the disease.
“I think the parts of the brain that allow us to suffer and self-reflect are lost very early in frontotemporal dementia,” – Dr. Bruce Miller
Emma also conveyed some loving images of Bruce’s original goofiness, which thankfully still exists even in its new form. She remembered his golden belly laugh, and how it brings joy even in moments of grief.
“It’s his laugh, right? Like, he has such, like, a hearty laugh,” – Emma Heming Willis
These shifts are bittersweet, because like they’ve arrived, they’re gone in a flash.
“And it’s just hard to see, because as quickly as those moments appear, then it goes,” – Emma Heming Willis
Dementia is a cruel disease impacting more than 6 million Americans and their families. The Centers for Disease Control and Prevention offers helpful information and community resources for different forms of dementia, including frontotemporal dementia. For Emma, she hopes her book will be a roadmap for others like her, on similar caregiving journeys.
