In the six years since Robin Williams’ death at the age of 63, there’s been endless conjecture about what drove the beloved star to take his own life. But ahead of the new documentary Robin’s Wish, his widow Susan Schneider Williams is opening up about her husband’s final days — and how it felt to learn that, unbeknownst to both of them at the time, he was suffering from Lewy body dementia.
A degenerative neurological disorder, Lewy body dementia can only be diagnosed after death. So, although Robin and Susan had long been searching for answers, it wasn’t until Robin was gone that Susan finally got them. “That was really challenging,” Susan told Today’s Hoda Kotb on Tuesday of the speculation surrounding Williams’ death. “Robin and I knew there was so much more going on. Robin was right when he said to me, ‘I just want to reboot my brain.’ In that moment, I promised him I would get to the bottom of this — I just didn’t know that would be after he passed.”
While discovering Robin’s diagnosis was heartbreaking, it was also an ah-ha moment for Susan. “I was called to sit down to go over the coroner’s report. They sat me down and said, essentially, Robin died of diffuse Lewy body dementia. They started to talk about the neurodegeneration. He wasn’t in his right mind,” said Susan, adding, “It makes sense why he was experiencing what he was experiencing.”
When Robin Williams died in 2014 the world was shocked, but few had any idea about the real circumstances surrounding his tragic death. Now, a new documentary reveals the truth about the heroic battle Williams and his wife, Susan, were fighting behind the scenes. pic.twitter.com/5NGOxAdrC9
— TODAY (@TODAYshow) September 1, 2020
Robin’s autopsy showed that, by the time of his death, the disease had infiltrated every region of his brain. Shared Susan, “Robin and I had gone through this experience together, really being chased by an invisible monster, and it was like whack-a-mole with the symptoms. I left there with the name of the disease, the thing that Robin and I had been searching for.”
And search for answers they had. In Robin’s final years, he was diagnosed with Parkinson’s but feared he had schizophrenia or dementia. “Lewy body dementia is a devastating illness. It’s a killer. It’s fast, it’s progressive,” Dr. Bruce MIller, director of the Memory and Aging Center, explains in a clip from the documentary. “This was about as devastating a form of Lewy body dementia as I had ever seen. It really amazed me that Robin could move or walk at all.”
Still, it goes without saying that Robin struggled. When doctors suggested for medical reasons that he and Susan sleep in separate beds, he couldn’t make sense of it. “He said to me, ‘Does this mean we’re separated?’ And that was a really shocking moment. When your best friend, your partner, your love — you realize that there’s a giant chasm somewhere, and you can’t see where it is, but that’s just not based in reality. That was a hard moment,” said Susan.
The fact that Robin’s diagnosis eluded doctors for so long may be a testament to his fortitude and, well, that brilliant and beloved brain of his. Revealed Kotb at the close of her interview with Susan, “The doctors were saying that because he had this incredible brain with so many pathways in it, it was sort of how the disease could hide itself.”
The new @RobinFilm documentary shares insight into Robin Williams’ unknown battle with #Lewybodydementia. Join us live on September 1 at 8pm ET to hear how Susan Schneider Williams helped create #RobinsFilm in honor of her late husband. Register for free: https://t.co/THRO2OY5p3 pic.twitter.com/S6GvFg1DVx
— American Brain Foundation (@ABFbrain) August 28, 2020
It’s Susan’s hope that, through Robin’s Wish, people will come away with a better (and less stigmatic) perspective on brain disease. And in her role as Vice-Chair of the Board of the American Brain Foundation, she works to create opportunities for better diagnosis and treatment of Lewy body dementia in Robin’s honor.
Speaking to Kotb, she recounted asking Robin what he hoped to accomplish in his life. “Without missing a beat, he said, ‘I want people to be less afraid.’ I thought it was beautiful,” she recalled. “And I said, ‘Honey, you’re already doing that. That’s what you do.’ And that is pretty great.”
Before you go, click here to see more celebrities who’ve discussed their mental health.