Robin Williams & Dementia

A little over a year ago, in August 2014, hearts ached everywhere for Robin Williams. All the way in Italy, just days into my volunteer trip, news stations covered the story of his suicide from morning until night. It’s an incredible thing to see firsthand the impact a person can have on the world; Robin’s language was English, but his passion, excitement, warmth, and humor universal. All were shocked and saddened to learn that someone so outwardly cheerful, so loved and admired, felt so down and alone. Depression is a cripplingly powerful illness.

Just this week, there’s been a new onslaught of media attention thanks to an interview People Magazine conducted with Robin’s wife. Speaking out for the first time, Susan confirmed that while her husband did suffer from depression, his post-mortem diagnosis indicated that he had Diffuse Lewy Body Dementia, as well, an illness responsible for the alarming symptoms he was quietly experiencing. I, like the rest of the world, am surprised by this diagnosis… but not at all by his actions.

The disease is named after Lewy bodies, or abnormal protein deposits on the brain. It affects not only a person’s memory, but also their mood, thoughts, behavior, and ability to move. It is the third most common cause of dementia and its symptoms, which cannot be cured, worsen over time. According to Susan, in the year leading up to his death, Robin “struggled with unexplained mental symptoms including anxiety and delusions. The disease also manifested itself physically, burdening him with muscle rigidity and impaired movement. It wasn’t until he died and his body was autopsied, however, that doctors were able to pinpoint the cause of his symptoms.”

How f’ing horrifying. Can you imagine being diagnosed first with Parkinson’s, then experiencing symptoms that literally drive you crazy?

“This personal change phenomenon is, in my humble opinion, the most powerful and devastating symptom of dementia I have thus far experienced. There is little written about it, other than to say, “There may be personality changes.” I may become a tad “more confrontational, paranoid, confused” than I was before [onset]. Where are the studies of these phenomena? Where are the books, the papers, the programs on what to expect, how to deal with it, what pills to take to reverse it? Who is researching “[dementia] personalities syndromes?”

Dr. Taylor

The diagnosis alone of something like Parkinson’s disease, which his often accompanied by dementia, is – in my opinion – enough to push someone over the edge.

“There is a very practical explanation as to why individuals with end-stage [dementia] do not take their own lives, nor do they ponder or plan the act. They simply lack the intellectual capacity, and the physical ability, to end their lives. However, what are individuals diagnosed with the disease to think when they are staring at a video of an individual in the end stage? What are we to think as we stare down the gun barrel of death, but have yet to crawl into it?

– the insanely powerful words of Dr. Taylor

Similarly, fellow dementia sufferer Dr. Cary Henderson writes:

“I really sincerely believe that if somebody wants to go ahead and die from [dementia], if life has become that bad for them, I think anybody who can quietly assist them to die, I think, would be a [godsend].

This Dr. Kevorkian, this doctor way up North who helped people to kill themselves – I think he did the right thing. Apparently all of these people had wanted to die, and had a very, very good reason for it.

When your mind is dead or dying and there’s no recourse, and the best you can do is spend the rest of your life in pure stupidity and unknowing stupidity… I think that is one of the biggest travesties of what sometimes is called “medicine” that we have ever heard of. It seems like fairly commonly, we do read about people who die from [dementia], but we can also speculate about people with [dementia] who – they’re ready to die. I would think it’s just overwhelming them to the point where there’s no place to go, no place to hide.”

As a society, we feel and say things like, “Suicide is selfish.” We’re quick to judge and make assumptions. We “put ourselves in others’ shoes” when we truly have no clue. My heart aches more for Robin Williams now than it has since the news broke of his death. I hope above all else that he is at peace, and that his wife’s statements shed light on this disease.. that they fuel the too-dull fire that is the importance of dementia research and awareness, and that together we make strides toward finding cures.