Susan Schneider Williams, the widow of celebrated comedian Robin Williams, has made it her mission to raise awareness about the neurological disorder her husband was suffering from before he died.
Williams’ longtime personal assistant, Rebecca Erwin Spencer, found his body in his bedroom on August 11, 2014. While the cause of death was ruled a suicide, the autopsy later revealed Williams had been battling Lewy Body Dementia. The disease impacts a patient’s mental abilities and can cause increased anxiety and hallucinations, among other symptoms, according to the Lewy Body Dementia Association.
Schneider is opening up about her husband’s final days in a new documentary called Robin’s Wish, which is now available on-demand. Schneider explains in a trailer for the film that “nearly every region of his brain was under attack. He experienced himself disintegrating.”
Here’s what you need to know:
1. Schneider Described Lewy Body Dementia as ‘The Terrorist Inside My Husband’s Brain’
Lewdy Body Dementia affects an estimated 1.4 million patients in the United States, according to the LBDA. The Mayo Clinic describes the disorder as “the second most common type of progressive dementia after Alzheimer’s disease dementia.”
But the disease is often misdiagnosed because the symptoms are often similar to Parkinson’s or psychiatric disorders. Willaims never received an accurate diagnosis. Schneider told People after her husband’s death, “I know now the doctors, the whole team was doing exactly the right things. It’s just that this disease was faster than us and bigger than us. We would have gotten there eventually.”
Schneider detailed Williams’ struggles in a September 2016 editorial for Neurology, the medical journal for the American Academy of Neurology. She described how Williams’ “fear and anxiety skyrocketed” over several months and that “Robin was losing his mind and he was aware of it.” She added, “My husband was trapped in the twisted architecture of his neurons and no matter what I did I could not pull him out.”
Schneider has become an advocate to raise awareness about the illness. She joined the American Brain Foundation board in 2016 and was named Vice Chair earlier this year. Her work has included lobbying Congress for increased funding and support for medical professionals as they learn more about the debilitating disease. According to her bio on the ABF website, Schneider helped set up the Lewy Body Dementia Fund. One of the goals is to find a biomarker for LBD that could make it easier for doctors to detect the disorder and therefore improve treatment.
2. Schneider Is a Professional Painter
Schneider is a professional artist. According to her website, Schneider graduated from the California College of the Arts and worked as a graphic designer for 25 years.
Schneider went on to launch her own firm called Critical Eye Design, which specialized in corporate branding and marketing. She was still running the company when she and Williams tied the knot in Napa Valley in 2011.
But as Schneider explained on her website, her true passion was for painting. She wrote that she would “lose herself in front of the easel, expressing through paint and making discoveries.” Schneider said she started shifting her company away from graphic design in 2006 and it eventually became Susan Schneider Fine Art. In addition to showcasing her own artwork, Schneider teaches painting and curates shows for other artists.
The light is what attracts me to a subject. First I capture it with my camera and then paint from that photo back in my studio. As a professional artist the studio has always been like a lab to me. It’s where I get to explore the true elements of a composition. It’s where I can make observations and problem solve as I try to convey with paint the message of a moment in time. Through it all, the more I learn about my subject, the more I learn about myself.
3. The Home Schneider Shared With Williams Is For Sale
Schneider continued to live at the house she shared with Williams in Tiburon, which is part of the San Francisco Bay area, following his death. She and her two sons from her first marriage were allowed to stay at the property as part of a settlement with Williams’ three children, according to Rolling Stone.
Schneider has since decided to move on. The 6,500 square foot house on Saint Thomas Way was put on the market in November 2019 for $7.25 million. According to Compass, the house was built in 1987 and renovated in 2002. Williams purchased the property in 2008 for just over $4 million, property records on Redfin show.
The six-bedroom, Mediterranean-style home has an open floor plan and beautiful views overlooking the San Francisco Bay from nearly every room. But as of this writing, the house had not yet sold. The price has since been lowered to $5.995 million.
4. Schneider & Williams’ Children Settled a Dispute Over His Estate in 2015
Williams’ death triggered a contentious legal fight over his estate. According to Rolling Stone, Williams had left his estate, valued at an estimated $100 million, to his three children but had a “special provisions” to ensure Schneider and her sons were cared for as well.
But Schneider and the Williams’ family battled over real estate and other possessions after the actor passed away. Schneider filed a petition in December 2014 to ask for more money from the estate. She claimed she wasn’t receiving enough to manage the house in Tiburon. The two sides also argued over Williams’ bicycle collection, awards and photos, People reported.
The case was settled out of court in October 2015. Schneider was able to keep wedding gifts, a watch Williams wore often and a bike they bought during their honeymoon. She told People in a prepared statement, “I feel like Robin’s voice has been heard and I can finally grieve in the home we shared together. While it was painful to have truckloads of his belongings removed from our home – it’s the few sentimental items I get to hold onto that mean everything to me. I thank God for this.”
5. Schneider Said Williams’ Last Words to Her Were ‘Good Night, My Love’
Schneider’s first public interview after Williams’ death was with Good Morning America in November 2015. Schneider told interviewer Amy Robach that she and Williams had been staying in separate bedrooms before his passing because he had been struggling to sleep. Insomnia, as well as excessive daytime sleepiness, are symptoms of Lewy Body Dementia.
Schneider said Williams’ last words to her were “good night, my love.” She repeated the words back as she was getting ready for bed. She said Williams came into the room one more time to retrieve an iPad but didn’t say anything.
Schneider never thought her husband was suicidal and stresses that it was Lewy Body Dementia that killed him. During the interview with GMA, Robach asked Schneider whether Williams had been trying to “take control back” after months of slowly losing his mind. Schneider said she believes that he was. “I think he was just saying ‘no.’ And I don’t blame him one bit.”
In part two of the interview, Schneider explained that she and Williams shared a “perfect day” together the day before the suicide. “We just did what we love to do together. And I know now that he gave me that perfect day, he gave us that perfect day. In hindsight, he knew what he was doing.”