Wednesday, 22 April 2009

Nothing in her life became her like the leaving of it.

When my paternal grandfather was in his early seventies he had a completely debilitating stroke. He could move only his head, was incontinent and could not speak. I remember being taken to visit him and watching him turn his head away from me, tears streaming from his eyes. He lived that way for several weeks and died. My father was so stricken by his father's plight that he acquired from his doctor a lethal dose of sleeping pills and gave me instructions that if he was ever in a like state, I was to administer them. Luckily, for me and him, he died in his sleep one evening while watching a ball game on TV and I never had to make the decision of whether to use them.

I have tended a lot of dying relatives. My mother, my mother's sister and my father's sister all had varying degrees of dementia in their last years and months. It was heartbreaking to watch them struggle; caring them for them took all the strength and courage that I had. My Aunt Marion, the last of my charges, had an inoperable cancer, macular degeneration, emphysema and incontinence. Experience had taught me a lot by the time she came into my charge. The instructions I laid out at the nursing home included a comprehensive DNR (Do Not Resuscitate), including instructions that she not be taken to hospital, and permission for morphine for 'comfort'. She too died peacefully in her sleep, but it took a few months. My daughter and another aunt took turns with me, sitting with her. If I had had to do it alone, I think I would have broken.

The hardest thing for me is that my memories of these loved ones as competent and vital women are overlaid with images and experiences of their debility. I have to fight past a vivid mental picture of my mother in her last day of life, frantic with pain, frightened, a tiny figure of bones and white skin, to see her as I want to remember her. My aunt, much the same, I fight not to see her with her head lolling back against the headrest of her wheelchair, jokes and stories all gone, waiting to die, her clawed hands limp in her lap. This aunt was an artist and her hands were beautiful, skilled, graceful, producing marvellous cartoons and paintings. That is how I want to remember her and that is, no question, how she would want to be remembered.

I do not want to leave a memory like that for my children and grandchildren. I do not want to spend my last days with them knowing that they are struggling, that visiting me is heartbreaking, that their grief is compounded by my debility. I do not want to become their task, their burden, their nightmare. What I want is a legal way to take my own life while I still have the mental and physical capacity to do so. What I want is a quantum change in medical ethics and the law of the land that will allow me to die with dignity, my own mistress still. My kids are not going to like that either, I know well, but I believe that such a death would leave a clean wound, not a festering, lingering sore.

If the law will not change to allow me access to a nice lethal pink pill, I want my children to give instructions for no medical intervention and lots of morphine with a clear conscience and then go home.

To a blogging friend who is living this, my love.


  1. yes, I know what you are describing. Unbidden memories of a loved one's suffering are more than a bit like a badly made horror movie in which shocking images appear suddenly on screen.

    My mother-in-law is a story-teller. Not all her stories are terribly interesting, but she has more than one about everyone she has ever known and she tells them often as a way of firmly establishing positive memories.

  2. Hear hear!

    In my experience people are dead before they stop breathing, and it's a shame to see them lying there unconscious like that. Death is a hard thing. Apparently, it is good to play god (what a stupid phrase) by helping people to live longer but not by helping them to die better.

    Okay, you got me going.

  3. I’m the odd man out—but my opinion differs somewhat. But I know you welcome differing opinions. Watching loved ones pass is painful and difficult. My husband’s grandmother lived with his parents for several years before she passed at the age of 93. Even though it was hard to watch her weaken and deteriorate--those last years of her life were the sweetest we shared with her. The grand kids and kids all got to know grandma. I also loved watching how my mother-in-law patiently loved and cared for her mother as her life drew to a close. It was a sacred experience for all of us. Life is never easy--and dying may be the hardest experience of all. But we all deserve love and care as the door on our life closes. Those leaving us have often spent their life taking care of us, so the price of time required of the younger generation is not too high. In fact, I believe it to be a blessing as our service to loved ones makes our memories of them even more tender.

  4. It does seem our medical system is all farged up in how we tend to the dying. Why do we fight and fight to keep them alive. There is a time to just let them go...

    And yes, why don't we all have more control over our living and dying? Seems perverse to me that we don't.

    My best to your friend.

  5. Kaye, I am not sure your comment is an opposing one. I think we owe the sick and dying our love and care. I do not begrudge any time I spent that way.
    But I also think we owe the dying as much comfort as we can give them. I do not believe that there is nobility or service to God in suffering just for the sake of suffering. And I would spare those I love that useless pain.

  6. Your fourth paragraph could have been written--though not as wonderfully--by me. And Mary G, your comments are thoughtful and so true. What a terrific post.

  7. I agree with every ounce of my being.

  8. oh yes. just today I was at a funeral, and we were talking about this very thing. modern medicine has done some wonderful things, for sure, but this prolonging of life after it really should have ended is not one of them. The emotional cost is high (not to mention the actual medical cost!)

  9. Another reader chiming in to agree. One of our Parliament members is campaigning for a change in the law as she herself has been diagnosed with Parkinson's disease. She has always been a formidable, feisty woman and I can quite understand that she wants her family to be allowed to remember her as such.