Karen Wilder is speaking out after losing her husband, Gene Wilder, to Alzheimer’s disease in August 2016, saying his diagnosis “could have killed” her, too.
The late actor’s wife of 35 years shared her experience with caring for someone living with the debilitating disease in an essay for ABC News, in hopes of raising awareness for caregivers. “I never pictured myself marrying a movie star. I also never saw myself spending years of my life taking care of one. But I’ve done both,” she shared in the essay published Tuesday, January 2. “Love was the reason for the first. Alzheimer’s disease, the second.”
“Unlike other diagnoses, even some cancers, this one offers not even a shred of hope for survival,” she wrote, saying they decided to get him tested after he forgot the name of his movie Young Frankenstein one day. “My husband took the news with grief, of course, but also astonishing grace. I watched his disintegration each moment of each day for six years. We still managed to have some good times and to laugh, even at the ravages of the disease that was killing him.”
The costume designer, who married Wilder in 1991, said that what people don’t really know is how much the disease takes a toll on the sick person’s loved ones. “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 shared.
The former speech pathologist reached out to the Alzheimer’s Association after her husband’s diagnosis and learned that 40 percent of Alzheimer’s caregivers die before the patient from the physical, spiritual and emotional toll, of caring for their loved one.
“I have a responsibility, I think. Neither my love, nor science, could save my husband’s life,” she wrote. “But it’s my most profound hope that through research and awareness, others may be spared the experience that killed Gene — and could have killed me, too.”
She added: “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. Without them, those with Alzheimer’s could not get through the day, or die — as my husband did — with dignity, surrounded by love.”
As previously reported, the beloved 83-year-old actor died of complications from the disease over a year ago. A statement from the family in 2016 revealed that the Oscar-nominated star chose to privately suffer with the progressive brain disorder for three years.
“The choice to keep this private was his choice, in talking with us and making a decision as a family,” the family shared at the time. “The decision to wait until this time to disclose his condition wasn’t vanity, but more so that the countless young children that would smile or call out to him ‘there’s Willy Wonka,’ would not have to be then exposed to an adult referencing illness or trouble and causing delight to travel to worry, disappointment or confusion.”
They added: “He simply couldn’t bear the idea of one less smile in the world.”