Charles Decarli, director of the Alzheimer’s Disease Center at the University of California, Davis, was stunned to hear that Bruce Willis had been diagnosed with a brain disease a few weeks ago — in part because he knows better than most of what it means.
The news brought him back to the time he was in Washington, D.C., when he watched the movie star perform with his band.
DeCarly said Welles “plays a very sinister harmonica” and “wasn’t exactly a bad singer.”
Even loyal Willis fans may not know that in 1987, he dropped an album called “Bruno’s Return.” Soon, his version of “Respect Yourself” reached number five on the Billboard charts, and led to the production of a groovy ’80s video where Willis sings on a broom handle while June Pointer of the Pointer Sisters grumbles.
So when the doctor heard of Willis’ diagnosis of aphasia and his decision to stay away from acting, it was this creativity and joy he saw in Willis during his live performance, DeCarly began to grieve.
But like me, DeCarly was also thinking of the Willis family, accepting them into a club no one wanted to join.
My father suffers from dementia. If I had to guess, I’d say he goes about a quarter of the way through a process that sometimes deprives him of his ability to remember my name, or the essential details of his life. But he still had a driver’s license and resolute stubbornness that nothing was wrong.
This is what happens when the mind begins to deteriorate. While it’s unclear whether Willis suffers from progressive aphasia, the type that may get worse over time, his decision to end a career he loved clearly indicates that he does.
Although progressive aphasia and dementia are two different types of brain disease, as with Alzheimer’s disease, they share a devastating, unstoppable, continuous decline, often slow enough to make it feel like a never-ending cycle of the five stages of grief.
Denial, anger, bargaining, depression, and acceptance over and over again because every little part of the person you love disintegrates but the burden of care gets heavier.
Every three seconds someone develops Alzheimer’s disease. By 2050, 131.5 million people will live with dementia, and already 20% of Americans over the age of 55 have a mental disorder – all the facts from the DiCarli Institute.
The point is that degenerative brain disease is becoming more common with age, but its sheer awfulness prevents us from discussing it the way we should.
And so I want to thank the Willis family. Thank you for being brave and strong enough to talk about it.
“When a public figure is diagnosed, it raises awareness of the great burden families bear,” Decarli told me.
“Our society doesn’t make room for this,” he said, citing our superficial nature, our competitive edge and, especially in Hollywood, our focus on appearance and achievement. Decarli warns that society “does not take into account the aging process and dementia is an example of the aging process”.
He believes that the importance of degenerative brain diseases lies in their prevalence of “stroke, heart disease and cancer”. But it can “overtake it depending on how things grow. This can overwhelm our system,” he said.
In a way, it seems easier to talk about death and end-of-life decisions than discussing our desires and expectations if our minds are hollowed out by our personality and with our ability to make decisions.
I have a Care Directive, as many of us do, 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 his patients that it’s not a light switch diagnosis. The person you love is not there one moment and gone the next. The trick, he said, is to live the moments you have.
But he admits – it’s true so it doesn’t happen. In the end, it can be hard to see the person you love in the one remaining.
In some cases, the loved one seems to come and go. In others, they become strangers. Many, like my father, lose the ability, or will, to make sense of progress.
“One of the problems with this disease is that you forget what you don’t know,” Decarli says. This is where the burden begins to fall on families, who are sometimes left trying to care for a loved one who doesn’t want the care, doesn’t think they need it and, at worst, doesn’t recognize the caregiver trying to help them.
Sometimes a sick person resents his family members, sometimes he is angry or cruel.
DeCarly says he sees families struggling with that all the time. By then, it may be too late for conversations.
“It’s really, really hard when that happens because the person seems to be cruel or mean or inattentive,” Decarli said.
The family sometimes sees the development of the disease as evidence that “my mom never loved me and this is an example of how she never loved me,” he said.
It attempts to explain what appear to be emotional responses caused by physiological changes and to reassure families that their loved ones actually love them.
But the truth is that these family ties may disappear at some point. Relationships with loved ones are often broken on the outside as the brain breaks down on the inside.
In the end, a person with a brain disease may not love their family anymore because this ability has been lost, or the love is so buried that it is hard to see.
This reality is heartbreaking, guilt-inducing, and often negatively affects the mental health of those who try to be generous and loving to the person who slips away.
As an example, DeCarli said: “You are a shepherdess, and you are no longer a wife.” “Some do better than others.”
It is pure sadness. Perhaps a fan who calls herself Hollyrock954 best expressed our collective feelings for Willis on Rumer Willis’ Instagram account.
She wrote: “You are a famous family, but still this … family.” “Love is clear and I’m sorry for the pain you’re all feeling.”
The Willis family have shown immense grace by sharing the news, and I hope this leads to a more open discussion about how we want old age to be, for ourselves and those we love.
I also hope the Willis family knows that there is no perfect and right way to get through this. There is nothing but picking ourselves up to try again when we fail to meet our own expectations of love without selfishness and without expectation.
For with the undeniable cruelty of brain disease and its long farewell, all we can aspire to be the kind of hero that Bruce Willis played on screen—the imperfect one who rises to the occasion, even in the hardest of times, even when that seems impossible, even in In the event that there is no personal bonus.
Just doing the right thing, because it’s the only thing left to do.