Overcoming the Stigma of Alzheimer’s Disease and a Message from Willy Wonka
Gene Wilder was an incredibly funny man, a gifted actor and writer. Gene received numerous accolades, the respect of his peers and the love of millions of fans. His performance in one of my favorite movies, The Producers, was epic and led to a nomination for an Academy Award for Best Supporting Actor. His collaboration with Mel Brooks in writing Blazing Saddles and Young Frankenstein garnered them an Academy award nomination for Best Adapted Screenplay. He won an Emmy Award for Outstanding Guest Actor for his performance in Will And Grace in 2003. From 2005 through 2013, he wrote and published several books. Gene was a closet philanthropist and active in the fight against cancer.
In 1971, Gene starred and sang in Willy Wonka and The Chocolate Factory. His love for children comes out loud and clear in this movie. As a result, generations of children loved and will love Willy Wonka. This is one of the reasons he kept his Alzheimer’s Disease secret until after his death. Children smiled and called out to him whenever they saw him. He did not want to be responsible for any child to be sad or confused when they inevitably found out he was sick of this disease.
What can we learn from Gene about Alzheimer’s? His was diagnosed early enough so he could be with and enjoy family while maintaining his routine and quality of life. His nephew has shared in interviews that Gene maintained a sense of self. His personality shone through. He was able to discuss his final wishes with his family and the reason for his decision. He authorized the family to release the cause of illness after his death to raise awareness of this progressive disease. Gene’s Alzheimer’s was diagnosed early enough so that he could express his wishes and take the necessary steps to plan and effectuate his choices.
But what of the stigma? Why not continue to keep the cause of death a secret? Ever mindful of others’ struggles, Gene wanted to help people understand and learn about this degenerative disease. Doctors say that people wait too long and only come for treatment in Alzheimer’s last stages. There is shame and fear about the condition. No one wants to be seen as a person with a form of dementia.
Many of us are afraid of the diagnosis and how it will affect our lives because we only think of Alzheimer’s in its later stages. We don’t realize that with early diagnosis our quality of life can be maintained for a longer time and there are treatments available to slow the progression of the disease. The fear and shame prevents people from getting an early diagnosis. It also prevents us from looking ahead and planning our estate. I have seen too many families not only grieve the loss of a loved one but the loss of the loved’s one ability to make their own choices, something that is so very important to all of us.
Gene Wilder planned to bring awareness to this disease. His goal was to educate people and to encourage them to get treatment, have a discussion with family and make their wishes known.
As an estate and elder law planner, I identify with these goals because it is what I want for each of my clients and their families. The key here is don’t wait to plan. Take action now and don’t be afraid to talk about this diagnosis with those you love most. It’s what Willy Wonka would have done.
