Karen Wilder, beloved wife of the late actor Gene Wilder, was until the time of her husband’s death one of the 16 million dementia caregivers in the United States. She shared her caregiving journey with ABC News this past January as a tribute to Gene and to help bring awareness to the toll Alzheimer's disease can take on family caregivers. While every caregiver’s journey is unique, Karen Wilder eloquently articulates the range of emotions that all caregivers can relate to. Originally published by ABC News, we found the piece so inspirational we want to share it again, as a tribute to Karen and to family caregivers nationwide.
Via ABC News: “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. 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.
When we finally got him tested and the diagnosis came back, it was Alzheimer’s. Unlike other diagnoses, even some cancers, this one offers not even a shred of hope for survival. The synapses of his brain were getting tangled and the result would be a steady and terrible progression of losses -- memory of course, but also motor control, to the point where eventually his body would simply forget how to swallow or breathe.
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. 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.
But let’s not forget that other killer -- the silent one that takes its victim even before the disintegration of brain cells does its own dirty work. I am speaking of the crisis that can kill the once-healthy loved spouses, siblings, friends and adult children of Alzheimer’s patients, who devote almost every waking hour of their lives (and also the nights) to caring for a person they love, but who may no longer recognize them.
I am grateful that Gene never forgot who I was. But many caregivers of Alzheimer’s patients are less fortunate."
To read the full story from ABC News, click here.
To see the full impact dementia has on caregivers, watch the below video, “Alzheimer’s Disease: The Greatest Financial Sinkhole of the 21st Century.”