Photo: Karen and Gene Wilder. Source: Earnthenecklace.com
Karen Wilder, who was married to Gene Wilder for 25 years, wrote an exclusive essay with ABC News to share with them her marriage with the late activist and actor. He died in 2016 at the age of 83, and in his last years, he battled Alzheimer’s disease. In this essay, she told their story of love and hardship, and what it was like to care for someone with this neurodegenerative disease.
Gene Wilder started out in the movie Bonnie and Clyde in 1967. However, he became popular because of Mel Brooks, who was both the writer and director of the film. Some of Wilder’s most famous movies are Willy Wonka and the Chocolate Factory, Young Frankenstein, and Blazing Saddles. He also became a novelist and an activist, being the author of Kiss Me Like a Stranger: My Search for Love and Art, Something to Remember You By, and What Is This Thing Called Love. When his third wife, Gilda Radner, died of ovarian cancer, he became an active supporter of ovarian cancer awareness, finding the Gilda Radner Ovarian Cancer Detection Center in Los Angeles and co-finding the Gilda Club, which started in New York but now is nationwide.
The story of Gene and Karen Wilder
Karen Wilder never imagined that she would marry a celebrity and spend her life caring for one. She and Gene Wilder first met in 1989 when he was practicing for his role as a deaf man in the movie See No Evil, Hear No Evil. Even though she was from Idaho, she had been working as a speech pathologist for 20 years in New York City. Because she worked with people who had a hearing impairment, Gene Wilder came to her office to further understand his role and seek her professional help.
After having meetings and consultations, they became close. However, during that time, his wife, Gilda Radner who also starred on Saturday Night Live, was fighting the last stages of ovarian cancer. After she died, Gene Wilder reconnected with Karen Wilder again. Then, just one year after, they got married. For more than 2 decades, they were in a bliss. They went on vacation to France and played three sets of tennis in the afternoon. They also both attended tap dancing classes and painted watercolors together in their garden. They enjoyed dancing the waltz, cha cha, and tango at night. It seemed like everything was perfect for the couple.
The problems that first occurred were minor. However, knowing how kind and gentle he was, she saw him get angry and frustrated at their grandson. There was also a time where he thought that he would crash into the trees, even though they were riding their bikes quite far from them. Perceiving things and their distance became increasingly poor for him. At one party, when one of his famous movies was discussed, he could not remember the title, and he had to show movements and use gestures for others to understand what he was talking about.
Because the problems became worse, she decided to have him tested. And, when the results came out, the diagnosis was Alzheimer’s disease. In Alzheimer's disease, the brain’s synapses were entangled, which results in progressive memory loss. Not only would memory be affected, a patient's motor skills would also be affected. So, by the time he was diagnosed, Gene Wilder already did not remember how to eat and even breathe.
Of course, the actor and activist was saddened by this news. However, instead of feeling disheartened, he accepted his disease with grace. For each day in six years, she saw his struggles and how these difficulties broke him. There was a day when she saw him having extreme difficulty tying his drawstring trousers. The same night, she was the one who took out the drawstrings. Another instance was when she saw his wrist bleeding due to his failed attempt to remove his watch. She had to put it away so he wouldn't use it again.
Though she was tried many times, she was determined to stay with him. They moved from California to Connecticut. When he accidentally fell and could not stand up on the patio, she moved him to the edge of the pool and helped him float to cross the side with steps and a railing. Another time, he was trying to stand up for 20 minutes. Then, he spoke as if he was inside the Belasco Theater, talking to the audience. He said, “Just a minute folks. I’ll be right back.”
Aside from making it increasingly difficult to do daily activities for patients with Alzheimer’s, it also ruins the lives of the family members. Seeing and caring for these patients can be extremely distressing and depressing for their loved ones. While this was the case for Karen Wilder, one thing she was thankful for is the help she got from Alzheimer’s Association.
From them, she learned more about the disease and found out the statistics around it. There is one out of three older people whose cause of death is Alzheimer’s disease or another kind of dementia. This means that when people invite three seniors, one of them has a higher chance of having Alzheimer’s. Another surprising statistic was concluded by the Department of Medicine in Stanford where 40% of people who took care of patients with Alzheimer’s die first because of physical, emotional, and spiritual exhaustion when trying to give the appropriate care.
When Gene Wilder took his last breath, Karen Wilder was right next to him. Before he died, he did not speak that much. However, on his last night, he looked her straight in her eyes and told her he trusted her three times.
She realized that she has a responsibility to fulfill after his death. She came to that realization that love or science couldn't save his life, but she still wants people to know more about Alzheimer’s by researching it further and raising awareness. Fortunately, The largest donation given towards Alzheimer's disease was made by The Gates Foundation, where a commitment of $100 million was given for further research on removing this disease completely. Karen expressed her happiness and appreciation for people taking this disease more seriously, finally seeing how important it is to diagnose it early and find a cure. Since Gene Wilder's death, one of the efforts to raise awareness and inspire others to do something is a video game campaign called the “Pure Imagination Project." To play a role in this inspiring way to raise funds, Karen Wilder gave them permission to use Willy Wonka, which is one of Gene Wilder's most notable roles.
In her essay, she also stressed the hardships that caregivers of people with Alzheimer’s experience. It is hard to imagine how spouses, parents, children, siblings, and friends are able to get by each day. They sacrifice themselves to care for people who might wake up one day not recognizing who their loved ones are. One thing she was really thankful for is that her husband never forgotten her. So, she did not suffer the heartache other caregivers go through for being forgotten.
If Karen Wilder could do it, everyone can do it. It may seem daunting to care for a loved one with Alzheimer’s, but it does not have to be this way. With the help of relevant agencies and other people, the suffering of the patient and the caregivers can be lessened.
According to the Alzheimer’s Association, the disease costs more than $200 billion each year. While the focus is currently more on discovering the cure and other treatments, caregivers should be given as much consideration.
Care is definitely needed by patients with Alzheimer’s. Nevertheless, the people who care for them also need care and attention. If there are no people to care for these patients, they would not survive for long, and they would die without the feeling of being loved and cared.