(Charles Sykes/Invision/Associated Press)
BY ANITA CHABRIA
Charles DeCarli, director of the Center for Alzheimer’s Disease at the University of California, Davis, was distraught when he learned that Bruce Willis had been diagnosed with a brain disease a few weeks ago, in part because he knows better than most what it means.
The news took him back to the time, in Washington DC, when he saw the movie star perform with his band.
DeCarli said that Willis “played the harmonica very well” and “wasn’t a totally bad singer.”
Even diehard Willis fans may not know that in 1987 he put out an album, “The Return of Bruno.” Shortly after, his version of “Respect Yourself” reached No. 5 on the Billboard charts, leading to a perfectly 80s video in which Willis sang with a broomstick while June Pointer of the Pointer Sisters swayed.
So when the doctor learned of Willis’ aphasia diagnosis and his decision to step away from acting, DeCarli regretted it.
But like me, DeCarli was also thinking about Willis’s family and joining a club no one wants to join.
My father has dementia. If he had to guess, he’d say he’s a quarter of the way through a process that sometimes robs him of the ability to remember my name, or basic details of his life. But he still has a driver’s license and a determined stubbornness that everything is fine.
And so it is when a mind begins to deteriorate. Although it’s not clear if Willis has progressive aphasia, the kind that she gets worse over time, her decision to end a career she clearly loved suggests that she does. And while progressive aphasia and dementia are different types of brain diseases, like Alzheimer’s, they have in common a continuous deterioration that is devastating, unstoppable, and often slow enough to feel like an endless cycle of the five stages of the duel
Denial, anger, bargaining, depression and acceptance over and over as every bit of the person you love disintegrates, but the burden of caregiving grows heavier.
Someone develops Alzheimer’s every three seconds. In 2050, 131.5 million people will live with dementia, and already 20% of Americans over the age of 55 suffer from a mental disorder – all this is data from the DeCarli institute. The point is that degenerative brain diseases are becoming more common as the population ages, but how terrible they are prevents us from talking about them as we should.
So I want to thank the Willis family. Thank you for being brave and strong enough to talk about it.
“Any time a public figure is diagnosed, there is an awareness of what a huge burden it places on families,” DeCarli told me.
“Our society doesn’t allow for this,” he said, citing our superficial nature, our competitiveness and, especially in Hollywood, our fixation on appearance and achievement. Society “doesn’t take into account the aging process and dementia is the clearest symbol of the aging process,” warns DeCarli.
He believes that the importance of degenerative brain diseases is “on a par with strokes, heart disease and cancer” in terms of their prevalence. But he could “outshine them depending on how they grow. It could overwhelm our system,” he said.
Somehow, it seems easier to talk about death and end-of-life decisions than to discuss our wishes and expectations if our minds are empty of our personality and thus our ability to make decisions. I have a care directive, like many of us, that clearly states what I want to happen if my body can no longer function. But few of us have plans in case our minds deteriorate.
DeCarli tries to tell her patients that it’s not a light switch-like diagnosis. The person you love is not there one moment and gone the next. The trick, he says, is to take advantage of the moments of clarity that you have.
But he recognizes that this is true until it ceases to be. Over time, it can be hard to see the person you love in the person you’re left with.
In some cases, the loved one seems to come and go. In others, they become strangers. Many, like my father, lose the ability, or the will, to understand the progression of deterioration.
“One of the problems with this disease is that you forget what you don’t know,” says DeCarli. That’s where the burdens begin to weigh on families, who are sometimes left trying to care for a loved one who doesn’t want care, doesn’t think they need it, and at worst doesn’t recognize the caregiver trying to help them.
The sick person is sometimes resentful of family members, sometimes angry or unkind.
DeCarli says she sees families struggle with it all the time. By then, it may be too late for talks.
“It’s very, very hard when that happens because it seems like the person is being insensitive or mean or unconscious,” says DeCarli.
The family sometimes perceives the progression of the disease as proof that “my mother never loved me and this is an example that she never loved me,” he said.
It attempts to explain that what appear to be emotional responses are the result of physiological changes and to reassure families that their loved one loved and loves them.
But the truth is that those family ties can disappear at some point. Connections with loved ones often break on the outside as the brain breaks down on the inside.
Over time, the person with brain disease may simply stop loving their family because that capacity has disappeared, or the love is so buried that it is hard to see.
And that reality is heartbreaking and guilt-inducing, and often takes its toll on the mental health of those trying to be generous and loving to the person who is walking away.
“You’re a caretaker, you’re not a wife anymore,” DeCarli said, as an example. “Some do it better than others.”
It’s sheer shame. A fan who calls herself Hollyrock954 has perhaps best expressed our common feelings towards Willis on Rumer Willis’s Instagram.
“They are a famous family, but they are still that … family,” he wrote. “The love is clear and I feel the pain that everyone is feeling.”
The Willis family has shown tremendous generosity in sharing the news, and I hope it will lead to a more open discussion about what we want aging to be like, for ourselves and those we love.
I also hope that the Willis family knows that there is no one perfect, right way to go through this. We only have to get up to try again when we do not meet our own expectations of loving selflessly and without expecting anything in return.
Because with the undeniable cruelty of brain disease and its long goodbye, all we can hope for is to be the kind of hero Bruce Willis played on screen: the flawed person who rises to the occasion, even in the hardest moments, even when it seems impossible, even when there is no personal reward.
Just do the right thing, because it’s the only thing left to do.
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Column: Bruce Willis’ family opened up about his health. His act will help others