Gene Wilder’s widow, Karen, has penned an exclusive essay for ABC News, in which she detailed her experience caring for the actor, who died in 2016 after a battle with Alzheimer’s disease. In it, she paid tribute to the caretakers who have endured the trials and tribulations of the disease.
“I never pictured myself marrying a movie star. I also never saw myself spending years of my life taking care of one,” she wrote in the essay. “But I’ve done both. Love was the reason for the first. Alzheimer’s disease, the second.”
After being happily married for 20 years, Wilder described the moment she learned something was wrong with her husband, when he lashed out at their grandson. “The first signs of trouble were small. Always the kindest, most tender man (if a fly landed on him, he waited for the fly to leave), suddenly I saw Gene lashing out at our grandson,” she wrote. “His perception of objects and their distance from him became so faulty that on a bike ride together, he thought we were going to crash into some trees many feet away from us. Once, at a party with friends, when the subject of Young Frankenstein came up, he couldn’t think of the name of the movie and had to act it out instead.”
Soon after learning he was diagnosed with Alzheimer’s, Wilder recalled her husband maintaining “astonishing grace” nonetheless. “I watched his disintegration each moment of each day for six years. One day, I saw him struggle with the ties on his drawstring pants. That night, I took the drawstrings out. Then his wrist was bleeding from the failed effort of trying to take off his watch. I put his watch away,” Wilder wrote.
As each day passed, Wilder described the struggles her husband had to endure, until his final day: “Gene died fifteen months ago. I was in the bed next to him when he took his last breaths. By that point, it had been days since he’d spoken. But on that last night, he looked me straight in the eye and said, three times over, ‘I trust you.'”
After watching her husband contend with the consequences of his disease, Wilder emphasized that it also destroyed her. “There’s another particularly cruel aspect to the disease of Alzheimer’s, because in addition to destroying — piece by piece — the one who’s stricken with it, it ravages the life of the person caring for its victims. In our case, I was that person,” she wrote.
Feeling as if she has a “responsibility,” the widow praised The Gates Foundation’s hefty donation of over $100 million to Alzheimer’s research. Following the donation, Wilder announced that her husband’s renowned character of Willy Wonka would be used in the “Pure Imagination Project,” which is a “new video campaign to bring greater awareness about Alzheimer’s and encourage each of us to do our part.”
While hopeful that research will uncover a cure, Wilder took a moment to acknowledge the struggles caregivers, like herself, endure as their loved ones battle Alzheimer’s.
“It is a strange, sad irony that so often, in the territory of a disease that robs an individual of memory, caregivers are often the forgotten,” she wrote. “Without them, those with Alzheimer’s could not get through the day, or die — as my husband did — with dignity, surrounded by love.”
Read the full essay here.