Lately, I’ve been thinking about death. No, I’m not being morbid. Please just hear me out.
First of all, there was the passing of Dr. Jack Kevorkian. I’m not going to comment with what he did or how he did it; however, I am glad that he elevated the discussion about death. One of the commentaries that I read after he died suggested that his actions helped increase the understanding of and support for Hospice in the United States.
Now the discussion is moving to Great Britain. The BBC aired a documentary by science fiction writer Terry Pratchett, who was diagnosed with Alzheimer’s disease in 2008 and who is a patron of Dignity in Dying, which campaigns for a change in British law to allow assisted dying. The documentary shows 71-year-old millionaire hotel owner Peter Smedley, who suffered from Lou Gehrig’s disease, taking his own life. As reported in the Guardian, Pratchett explained, “"Peter wanted to show the world what was happening and why he was doing it. You can tell in the film that I'm moved. The incongruity of the situation overtakes you. A man has died, that's a bad thing. But he wanted to die, that's a good thing."
However, opinions vary about this issue. I asked a group of friends who had a loved one who died from dementia what their take was on the story about the documentary. (To my knowledge, none of these folks actually watched the show.)
Ann, whose mother just died recently, was against the idea of both suicide and BBC’s decision to show the documentary. “Suicide is abhorrent, as is the BBC's decision to broadcast it,” she explained, “There are lessons to be learned, and God's grace to be had, even during times of suffering.
Jan, whose mother died a couple of years ago, expressed conflicting views. “I may disagree with the more popular opinions here. I do say ‘may disagree’ in that I'm on the edge here,” she said. “What's so terrible about being in charge of one's life and death? Again, I'm not certain whether it is right or wrong, but this is new territory on our horizon.”
Inez, whose father also died a couple of years ago, described understanding the various sides of the debate. “I believe firmly that even in dementia, life has lessons to teach all of us -- both the person who is sick and the family. It broke my heart to see my father with Alzheimer's. But at the same time, I saw him smile at the sunshine, enjoy a meal, and his last conscious night, ask to stay up to watch the end of Charles Dickens' ‘A Christmas Carol.’ He met his illness with courage and fortitude,” Inez said. “That said, I also believe every person has a right to his own opinion and own decision about life when facing dementia. Televising an assisted suicide, though, seems wrong to me. It's plain creepy and I sure won't watch. But I don't condemn anyone else's decision when faced with dementia.”
I find that I’ve got similar views as Jan and Inez on this particular issue. My maternal grandmother went through the entire stages of dementia and was no longer responsive at the end. Even though my grandmother was in a nursing home, Mom and my brother were regular presences, going three times a day to feed her and sit with her, and doing the laundry. I know watching her mother succumb to this disease seared a place into Mom’s soul. I remember my mom pulling me aside when I was in my mid-30s (which would have put Mom in her 60s). She did not ask, but instead told me that if she began to exhibit signs like Grandma, that I must take her to a desert and drop her off so she could walk off and die.
When the time came, I didn’t do that, but have struggled periodically with guilt for not fulfilling her wishes. As one friend advised, “Dorian, you would have been put in prison for doing this.” However, this decision was not about me; it was my mom’s ultimate wish because she had seen close-up the ravages of Alzheimer’s and adamantly did not want to follow in her mother’s footsteps. Mom focused on quality instead of quantity of life. She knew what having Alzheimer’s would mean ultimately for her own quality of life and she made it known that she wanted to die instead.
Having been unable to fulfill my mom’s ultimate wish, I increasingly think we need to continue to have open discussions about death and what form it takes based on an individual’s own beliefs, diagnosis and choice. I know that my mom would have appreciated having that choice.
Published On: June 15, 2011