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Gene Wilder passed away at 83 in August of 2016, which is surprising as it seems like it wasn’t that long ago. In their statement about his death, Wilder’s family was candid about the fact that Wilder suffered from Alzheimer’s, but said that they felt lucky as Wilder still recognized his loved ones and retained his personality up until the end. Wilder’s widow, Karen Wilder, has written an essay for ABC news about her experience loving and caring for the late comic during their 35 year marriage. Karen writes poignantly and in a matter-of-fact way about the toll it can take to care for a loved one with the disease. She describes sweet moments with her husband, his parting words are particularly meaningful, along with anecdotes about day-to-day life caring for him. It wasn’t easy for her, and she wants to bring awareness to the trials of caregivers. She also received help and advice from the Alzheimer’s Association, which she reached out to while caring for Gene. Karen wants people to remember the loved ones who care for Alzheimer’s patients and to understand that they’re suffering too. I can’t do justice to her essay but I’m excerpting some parts below, with more at the source.
I was determined to keep Gene with me –- in California and, finally, at the home we’d made together in Connecticut. We still managed to have some good times and to laugh, even at the ravages of the disease that was killing him.
One day, when he fell on the patio and couldn’t get up, I maneuvered him over to the edge of our pool and floated him to the other side, where there were steps and a railing to assist him. Another time, after struggling for twenty minutes trying to pull himself up, he looked out as if he was addressing the audience at the Belasco Theater, a place he knew well, and said in his best Gene Wilder voice, “Just a minute folks. I’ll be right back.”
But 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.
I am grateful that I knew to reach out for help from the Alzheimer’s Association. When I did, I learned some alarming statistics from them. One in three seniors dies with Alzheimer’s or another dementia. That means, if a mature couple invites two couples over for dinner, one of the couples could face Alzheimer’s.
Then came the biggest shocker: 40 percent of Alzheimer’s caregivers die before the patient according to a study done by Stanford Medicine — not from disease, but from the sheer physical, spiritual and emotional toll of caring for a loved one with Alzheimer’s.
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…”
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.
That really touched me. We’re so lucky in my immediate family that we haven’t faced this disease, but I know people who have and it’s devastating for the caregivers especially. I can’t imagine what it’s like to have a loved one not recognize me and to become someone I don’t know either. It must be so difficult to go through and I didn’t know that statistic that 40 percent of caregivers die before the patient. Karen mentioned that the Gates foundation has donated $100 million to Alzheimer’s research, which is the largest donation ever to the cause. We can do our part by calling our friends who are caring for Alzheimer’s patients and asking them if they need anything – a trip to the store, a visit for tea, or just someone to listen.