• Robin Williams and the case for assisted suicide

    I have not been in the finger-pointing camp when it comes to Robin Williams’ suicide. I have been in the “God, I loved that man,” “what a loss to us all,” and “let’s remember and celebrate all of the gifts he gave us” camp. But when I learned today that Robin Williams had been diagnosed with Parkinson’s disease, I suddenly felt as if I comprehended something about the actor’s choice that I had not understood before. As the daughter of a man who suffered from Parkinson’s, this information makes his choice more understandable to me.

    In another life, when I was a young attorney working in Oakland, CA, my father came to visit and take me to lunch one day. In the middle of some shitty deli (downtown Oakland did not have many awesome food options at that time), my father broke my heart. Years earlier we had both watched his father — my grandfather — wither away from this terrifying disease. By the time my grandfather passed away from pneumonia (one does not die from Parkinson’s, but, rather, from complications arising as a result of the disease), my family had witnessed a once-vigorous man reduced to someone whose muscles were frozen, who shook violently from the medication meant to combat those frozen muscles, and who was bound — hour after hour and day after day — to the confines of his easy chair. It was a horrific way to go and one my father did not intend to repeat.

    At lunch that day, my father told me that when the day came that he became like his father, bound to a chair and unable to care for himself, he planned to move to Oregon where assisted suicide is legal. Yes, my father told me in no uncertain terms, he planned to one day kill himself to escape his unbearable disease.

    I promptly broke into a fit of hysteria and called out sick for the rest of the day. I cried a lot from that point forward and much of my grieving over the loss of my father was done long before he left this world. But, my grief aside, I supported my father’s decision. The last thing I EVER wanted was for that wonderful man to die — of natural causes or otherwise — but when it came to his disease, especially knowing what the road looked like, if my father chose to end his life rather than suffer, he had my blessing.

    Flash forward several years. I have moved across the country, at least in part to escape the day-to-day reality of my father’s demise. This is perhaps the hardest thing I have ever had to write. It took a long time to admit it to myself. But it is the truth. I had always thought I would be the one to stay home and care for my father — God knows I loved him enough to be the one to do so. But the truth is, I was not strong enough. I was not brave enough. I was not selfless enough. I could not bear witness and so I left.

    On a particular visit home, I saw that, as if all at once, the flood gates had broken. Over the course of even a few days, I watched everything fall apart. Toward the beginning of my visit, I was cutting my father’s food for him, sponge bathing him and helping lift him when he needed to stand. By the end of the visit, my mother had to blend his meals for him; he could no longer swallow food.

    When I returned to New York, the reality of how bad things had become had set in for me. I made arrangements with my boss to take long weekends once a month. Things had gotten too bad for my father for me to be away. My uncle bought me a plane ticket home for the following month. By the time I took that flight, it would be to attend my father’s memorial service.

    Ten days after I had left my father in California on that last visit, I got a call from my mother. My father was in the hospital. He was no longer able to swallow. At all. The doctors wanted to install a feeding tube through his stomach. My father said no.

    He never moved to Oregon as he had planned; the downfall he had been trying to avoid came on too quickly. But he still chose a form of assisted suicide. He had the option to go on living, through artificial means, but chose DNR. Let me die, he said, and let my suffering be over.

    Robin Williams made a choice to end his life in the face of Parkinson’s. None of us can ever know how big of a role his diagnosis played in his decision, or how much his choice was compounded by depression and mental health issues. But we know now that he had been diagnosed with this unforgiving disease and I know what living with that disease would have looked like. It is a curse I would not wish upon my worst enemy and I understand why anyone facing life with Parkinson’s might choose to end their life rather than live with the disease.

    I remember reading an article on NPR not long ago about a woman who, when facing Alzheimer’s, decided to end her own life. Her family was aware of her decision and, while reluctant and angry at first, in the end, being able to be there for her as she made her choice helped them to grieve and say goodbye. “It was just so obvious that this is about as good as it gets for a human exit,” her daughter said. “She was surrounded by everyone who loved her, they were telling her how and why they loved her. This was not a bad way to go.” That was how it was for my family as well, when we were with my father in hospice, supporting and loving him as he made his choice to exit this world and be free of his disease.

    Sadly, Robin Williams’ family did not have the same opportunity. From what we know from Susan Schneider’s statement about her husband’s death, Williams made his decision — and ended his life — without the support of his family. Perhaps, if assisted suicide were legal in California, he would not have had to make this decision alone and his family could have been with him to hold his hand and love him as he gave his final bow.

    While speculation about how much his family knew is only that — speculation — I do know this. Parkinson’s is a crippling, intolerable, dehumanizing disease. And when facing a life spent in its throes, I have empathy for one who makes the choice to end their life and spare themselves and their loved ones the unbearable suffering it causes. I will remember Robin Williams and my father both as men who filled my life with love and laughter, who taught me lessons that will be with me forever and who made the difficult, but understandable, choice to end their lives in the face of this horrific disease.

      • Madgew

      • August 15, 2014 at 8:14 am
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      Beautifully said. My mom died this past April and she had Parkinson’s as well. She chose voluntary dehydration. She had had enough as she went downhill for 11 years. My sister and I were with her as she took her last breath. I changed my health directive to include involuntary and voluntary dehydration so my kids can help me if needed.

        • Sivan Butler-Rotholz

        • August 15, 2014 at 10:03 am
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        Thank you for sharing that, Madge. I am so sorry to hear that your mom also suffered from this monster of a disease, but I am happy she was able to make her choice about when and how to say goodbye.

      • Jesse Loren

      • August 15, 2014 at 9:15 am
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      Sivan, I am still sad that your father battled Parkinson’s disease. Also, I completely agree that assisted suicide should be legal in California. My dad withered away with pancreatic and colon cancer, my mother had dementia. Both diseases, although horrible in their own way, aren’t as mean as Parkinson’s. I respect the choice of Assisted Suicide and would respect that choice.

      For mom, she had a DNR order. After her massive, hemorrhagic brain bleed, the ER doctor showed us that heroic measures could be done, but she would be paralyzed, bed bound, unable to walk or feed herself. She never wanted that. It was spelled out in writing. Instead, we called hospice and cared for her in my home, surrounded by love, loved ones, pain relieving drugs, and singing. It was a perfect exit plan.

        • Sivan Butler-Rotholz

        • August 15, 2014 at 10:05 am
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        Jesse, I, too, am sad that your parents suffered as they did. My grandmother had pancreatic cancer, and Alzheimer’s is as horrific a disease as Parkinson’s, with its own trials and tribulations. May we be as kind to our humans as we are to animals and give everyone the choice of exiting this world with dignity, surrounded by loved ones. Thank you for your love and support.

      • Marsha Kolker

      • August 15, 2014 at 9:35 am
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      I knew everything that you wrote about, but reading it is so moving and heartbreaking all at the same time. I’m completely with you, I would personally like the choice to end my life if the other option is to suffer. Hopefully some movement will be made during our lifetime. You can put a pet to sleep to ease its suffering, but not a human being who feels the suffering and also has the cognitive understanding of what they are going through? Its unjust and cruel. I love you and your strength!

        • Sivan Butler-Rotholz

        • August 15, 2014 at 10:41 am
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        Thank you, Marsha! I completely agree. If it is humane to put an animal down when it is suffering, well, the very fact that the word we use to describe that option is “humane” tells us that humans, too, should have this choice. Thank you for your love and support.

    • Sivan, I applaud your insight, compassion, and bravery. As a nurse, I understand much of suffering. A dear physician friend mine died recently. He was 77 years old and struggling with prostate cancer (among other ailments). When the time finally came, he chose Hospice and died peacefully at home. I loved this man with all my heart. If I could have chosen my own father, it would have been him. I was so grateful he had this option and that his family supported his choice.

        • Sivan Butler-Rotholz

        • August 15, 2014 at 9:01 pm
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        I’m so sorry for your loss, Stacy. Thank you for your kind words, and for sharing your experience. Hospice can be such a blessing. The experience had a huge impact on my life, and I am grateful for having had that time to say goodbye.

    • Thank you Sivan and Magdew. My mother is dying right now with PD having refused good for nearly 3 weeks. She is still drinking but possibly only to see the last one of her children. Altho PD ‘doesn’t kill’ the misery and paralysis are lethal. I too have felt for Robin Williams’ family and well understood his decision.

        • Sivan Butler-Rotholz

        • August 15, 2014 at 9:05 pm
        • Reply

        I wish you strength and healing during this time, Sarah. My thoughts will be with you. What a beautiful thing for your mother to have you and your family surrounding her now. My heart goes out to you all.

    • It took my Mom 13 days without food or water. Water is the key element. Also, we had her patched up with fentanyl patches. They let her sleep and not wake up after day 4. Very peaceful. She was 87 and was totally disabled for the last 7 years. It was time.

        • Sivan Butler-Rotholz

        • August 15, 2014 at 9:06 pm
        • Reply

        Sometimes, it is time. And when it is time, it is a blessing to have the choice to let go.

    • You just shook my soul. Noone should be forced to suffer to live. That is not what living is about. I am sorry for the pain in your journey. Thank you for the courage to share your story. I am moved beyond words.

        • Sivan Butler-Rotholz

        • August 16, 2014 at 9:03 pm
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        Thank you for reading and for your kind words. I am moved, too, by your response.

    • Sivan, I referred to your piece in my blog at sarahtanburn.wordpress.com. I am 4 weeks into starvation and 1 week into dehydration by my mother at the end of PD so it is a great comfort to know there are some others out there. She has DNR etc in place but it is a very slow and agonising process to watch, although she has until yesterday been in v little apparent pain. As of yesterday she now has a syringe pump with morphine and anti-mucus drugs but no other drugs. Thanks for your words.

        • Sivan Butler-Rotholz

        • August 25, 2014 at 12:32 pm
        • Reply

        Sarah, Thank you for your beautiful and brave words on your blog. Wishing you strength, and patience as you support your mother now, and healing in the time to come.

    • Dark thoughts and plans. 16 years into PD. I have had enough, I wish CO. was sympathetic to end of life peaceful decisions.

      • Joe

      • March 18, 2018 at 6:55 pm
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