It is tough to find out that someone you loved and cherished is not only gone but faced incredible challenges along the way that you never even knew about.
It doesn’t matter if that person was a parent, a close friend, a co-worker, even a celebrity — you might have done so much more to support them, had you known.
Talking about Alzheimer’s helps bring a disease that isolates so many out into the open.
Perhaps that is why the death of comedy legend Gene Wilder earlier this week seems to have touched so many.
Wilder died Sunday night of complications from Alzheimer’s disease. He was 83. His family revealed in a statement Sunday night that Wilder, after being diagnosed three years ago, made the choice to keep his diagnosis a secret.
We never knew — and that was the way Wilder wanted it.
The disease, his nephew Walker Pearlman wrote, “never stole his ability to recognize those that were closest to him, nor took command of his central-gentle-life affirming core personality. It took enough, but not that.”
Pearlman added that Wilder did not want to disappoint “the countless young children that would smile or call out to him, ‘There’s Willy Wonka’ or expose them to the cruel realities of the disease.”
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Alzheimer’s experts and families understand that decision 100 percent. The disease can be an incredibly scary journey for those intimately affected. And it can make a person’s behavior somewhat unpredictable.
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But talking about Alzheimer’s at any point, either during a person’s life or after that person’s death, helps bring a disease that isolates so many out into the open, said Dr. Ronald Petersen, director of the Mayo Clinic Alzheimer’s Disease Research Center in Rochester, Minnesota, and the Mayo Clinic Study of Aging. Petersen also serves on the Medical Board of Advisors for the Pat Summitt Foundation.
“The folks who do discuss it publicly — Glen Campbell, Pat Summitt, Ronald Reagan — they do a great job at increasing awareness, educating [others] about the disease, bringing attention to the fact that anyone can get the disease, and also how they conduct their lives with a diagnosis. Glen Campbell, for instance, was diagnosed [with it] but he and the family decided to go on tour anyway,” Petersen told LifeZette.
“There were those around him who had concerns because there was the very real possibility he would make mistakes or fail in some kind of very public way, and that would be damaging to his reputation,” Petersen added. “But one of Glen’s road managers actually,said, ‘You know, when we started out on this tour, I had the concern that people were going to be coming to the concert looking for some kind of a disaster. I couldn’t have been farther from the truth. People who came to see Glen, came to see him, honor him — they loved him. So what if he sings ‘Wichita Lineman’ twice, the fans didn’t care. They knew he had the diagnosis of Alzheimer’s disease and they were there to support him. They were just glad he was able to do what he could do at that point in time.'”
But there is still a stigma, Petersen said, attached to Alzheimer’s. People often don’t want to disclose what’s happening because they feel that something is wrong with them or their mind, that they’re not thinking right or that they’ve done something in their life to bring this on. None of that is true, said Petersen. And more people talking openly about their Alzheimer’s reminds others they’re not alone.
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Awareness is crucial as well, because one of the most important ways to stay ahead of the disease is to diagnose it early. Petersen encourages everyone to understand their risk for Alzheimer’s and familiarize themselves with the signs — as certain biomarkers can now help predict the risk for Alzheimer’s very early on.
“There are trials right now looking at the underlying proteins in the disease that are causing the problem. We can see them earlier and earlier,” said Petersen.
Therapies currently available and still being developed are also encouraging, as they have the potential to target those biomarkers and either slow down, stabilize, or — in the future — possibly even improve function.
The developments can’t come fast enough for the millions already living with Alzheimer’s, those who have experienced it within their circles, and the rest of the nation increasingly at risk.
“When my dad began developing signs of dementia late in his life, it was heartbreaking for our whole family,” said a New York mother of two children whose father passed away a little over two years ago. “We started to see Dad slip away right in front of our eyes. The physical body was the same, or mostly the same — but the mind was not. He forgot names, details, stories he had known so well his whole life. Sometimes he confused the grandchildren, or even his own children. It got worse from there. We all needed an unusual amount of patience and compassion through all of it, and mostly we were concerned for him. We could see he was troubled that things were not right, but he couldn’t do anything about it.”
She added that information and conversation are crucial for families during these tough times. “The more people know about these issues, the more they can adapt, help, and cope,” she said.