Robin Williams was able to hide the severity of his illness, his wife tells PEOPLE

By Kara Warner
Updated November 06, 2015 11:30 AM
Barry Brecheisen/Invision/AP

The tragedy surrounding Robin WIlliams‘ 2014 suicide has become even more heartbreaking as his widow Susan Williams shares new details regarding his battle with the debilitating brain disease Lewy Body Dementia.

LDB is the second most common neurodegenerative dementia after Alzheimer’s and is frequently misdiagnosed, as in Robin’s case, due to its diverse, sporadic, “whack-a-mole”-like symptoms, which began to take a toll on the beloved comedian in the last year of his life.

“They present themselves like a pinball machine,” Susan tells PEOPLE of her late husband’s unpredictable symptoms and behaviors, such as heightened levels of anxiety, delusions and impaired movement. “You don’t know exactly what you’re looking at.”

Robin’s symptoms worsened in the months leading up to his death, but Susan says that even in his darkest moments of crippling anxiety attacks and paralyzing muscle rigidity, her “honey” was a brave and noble warrior.

“The interesting thing about the disease itself and also about someone who happens to be a genius and has the disease, and also someone who is a really good actor and has the disease, looking back and re-examining every minute of everything, he was really able to kind of keep it together when we were in social situations,” Susan says. “And then when we would be home, the truth about his experiences would come out.”

After more than a year of doctors appointments and countless inconclusive medical tests – and when Robin’s symptoms increased to limit his muscle movement and started to affect his voice – the couple finally received an official diagnosis of Parkinson’s disease on May 28, 2014.

“We felt like, ‘Oh my God, finally we have an answer,’ ” Susan says. “But that was hard news. That was very hard news for someone like Robin. For anyone, very hard news.”

And she could tell something still wasn’t quite right.

“We met with the neurologist and the meeting could not have gone any better,” she says. “[The doctor] was basically saying, ‘Many people have this, there are medications that can help, you’ll go and see a motor specialist and find out where you are in the disease and it’s going to be okay.’ In that appointment, Robin asked him not once but at least two times, emphatically, ‘So do I have Alzheimer’s?’ And the doctor said ‘No.’ He said, ‘Do I have dementia?’ ‘Absolutely not.’ ‘Am I schizophrenic?’ ‘No.’ So here I’m feeling relieved and I’m thinking Robin should be feeling relieved, but again I can really see into his eyes deep, there was something else going on.”

Robin started Parkinson’s medication, and they resumed most of their daily activities, which included meditation, yoga, and dinners with friends. Susan says she thought he was responding positively to the treatment. Fast-forward to July 24, about two weeks before his death, and a day that Susan now refers to as “the scariest day.”

“I was in the shower and I saw him standing at the sink, and I immediately thought, there’s something wrong,” she recalls, tearfully. “I wiped away the steam on the glass of the shower door to see what he was doing because it just seemed like he was lingering there, and he had a towel that was soaked with so much blood, he had hurt his head. I ran to him and screamed ‘Robin, what did you do? What happened?’ He had banged his head into the door. And his only response was, ‘I miscalculated.’ He was angry because by now he was so mad at himself for what his body was doing, for what his mind was doing. He would sometimes now start standing and being in trance-like states and frozen. He had just done that with me and he was so upset, he was so upset.”

The couple sought medical attention for Robin’s cut and then went to see his psychiatrist, who told Robin that it was time they consider an inpatient treatment facility where he could be closely monitored. Robin and Susan were also told they should try sleeping in separate rooms in an effort to improve upon their one to three hours of sleep per night.

“We were told, ‘You guys have to get sleep. This is dangerous, and Robin is going to be going in for neurocognitive testing,” Susan says. “That broke my heart. One of our favorite things to do is spooning, and by then it was hard because he thrashed at night because of the Parkinson’s symptoms.”

That mandate, coupled with the news about inpatient treatment, deeply affected Robin. Susan observed a change in him.

“There was this definite melancholy underneath it all,” she says. “I think at that point my honey was starting to make a decision on his own.”

Two days before he died, Robin treated his wife to a what she calls “a perfect day.”

“We did everything we love to do,” she remembers fondly.

Activities included their normal morning ritual: “He was on coffee patrol, I made us breakfast,” she says. That was followed by a leisurely patio lunch, an afternoon nap during which they curled up “like little animals” and later, the couple took in a friend’s art show and went to see Guardians of the Galaxy.

“It was great. We had our typical post-movie theater discussion, which was always so fun, and then we came home and had leftovers that night, nothing fancy,” Susan says. “Then he gave me a foot massage, which was awesome. We said ‘Goodnight, my love,’ which is what we always said to each other.”

When asked if she could tell if anything was different about her husband, Susan says she chalks it up to the new medications and says he could easily put up a good front.

“This is where my husband the actor I think came in,” she says. “I started to see that he was really doing better and that the medication was starting to work, and if he was not sleeping and having nighttime activities, he was hiding them from me. I think he was just protecting me.”

Susan’s final day with her husband was just as pleasant and mostly uneventful LBD symptoms-wise, save for a moment they shared in their kitchen.

“I looked out the window real quick and I saw these three little birds,” she says. “When you hear ‘three little birds,’ what do you think of? Bob Marley. So I go, ‘Look honey, it’s three little birds! Come on, sing it with me.’ And he started to sing it with me, apprehensively. He started to sing it and after a few lines he stopped himself and reached to his throat. To me it was perfect. But to him, he was losing control of his voice and he stopped, and I just saw this utter defeat in him.”

Later that night, Susan thought Robin was feeling better.

“He seemed like he was excited to do something in a way, maybe an interest in something,” she says. “So I thought, ‘Great.’ [At bedtime] he came over and gave me a kiss goodnight and offered me a foot massage and I was like, ‘That’s okay, you don’t have to tonight.’

“So he left the room and came back in and he went to his closet, I don’t know what he did. He got something or did something. And he said, ‘Goodnight my love!’ I said ‘Goodnight, my love!’ and he was gone for a few minutes and then he came back in and went to his office, which was connected to our room, closed the door and came back out with his red iPad with him, and again he seemed like he was doing better, like he was on the path of something. So I said, ‘Goodnight’ and I’m thinking ‘Okay, stuff is working. The medication, he’s getting sleep.’

“And that was the last time I saw him.”

For much more from Susan Williams, pick up the new issue of PEOPLE, on newsstands now