Sunday, October 21, 2007

How we die, what we do

Although this is a very negative, self-referential post, and I thought on reflection to delete it, I will let it stand as a lesson to myself, and to others who may read it. This opening remark was added 48 hours after posting the original article.....

I'm writing this just so I can externalise my mundane experience, and get comments if you have any and care to make them. It's about "how we die" and it's from first hand experience of watching someone die, and trying to be a help, as a Buddhist, and a nurse.

I work as a nurse looking after men and women with long-term psychiatric problems. Dorothy is one such, and I've known her for about three years. She is over 80, and has spent most of her life in hospital. She suffers from what is called paranoid schizophrenia. Her intelligence is unaffected (and she is pretty bright but largely uneducated), but all her life she has experienced the world as implacably hostile. She believes that people are conspiring to harm her, and that she is affected by the television and people's malevolent thoughts. She hears messages being broadcast about her by the BBC, plots to destroy her etc. Very ordinary conversations are misinterpreted as insults. This is very real to her, and nothing has ever succeeded in reassuring her that there isn't a global conspiracy to destroy her, and paint her as an evil woman who deserves to be punished. Needless to say she is always on the offensive with people, especially strangers, especially women, especially young women. She has established some rapport with us nurses, although she often accuses us of talking about her, trying to kill her etc. She isn't easy to help and has had times when she has been violent. Her language is obscene, and she is particularly offensive to black and ethnic minority staff, who are well represented at my workplace. She says they are diseased and dirty, and they shouldn't touch her. This is putting it mildly, as she is vicious and vituperative. She recently commented that a Community Nurse, who had come to renew her dressings, looked tired and pale: "You are masturbating too much, dear", she suggested in front of others. Typically Dorothy. Fortunately, we nurses are used to such invective, and can ignore it.

Dorothy has inoperable cancer of the cervix. Such is her suspicion, that she has never consented to an examination and will not contemplate treatment of any kind. The cancer has now undergone widespread metastasis, so that her whole pelvis is riddled with it, she is swollen below her waist and has a huge untreatable bedsore, despite every nursing intervention possible. She has large doses of morphine to control her pain as much as possible, but even on large doses it does not prevent her from experiencing agonies when we change her bed. She is doubly incontinent and, although we disturb her as little as possible, we have to attend to her four-hourly. It is a duty no-one looks forward to, but we care for her as gently and as light-heartedly as we can.

Dorothy has not really talked about death. Sometimes I sit with her quietly so she has a chance to talk if she wants to. Once ot twice I've asked her "What's happening?" or "What are you thinking?". The last time I did this she said "I don't know" and her eyes closed as if in exhaustion. Dorothy and I have a complex relationship but I believe she trusts and likes me. My feelings for her are complex too. It would take several pages to explain what we have been through together over the last few years, including the time when she was physically well and had no signs of cancer.

I don't really find any of the stuff I've read in Buddhist books much help in caring for her. Most of it seems to disregard the physical necessities of looking after people who are physically ill, dependent, and full of pain and fear. It's all very well advising people to do tonglen etc but one wonders who will wipe away the faeces and remove the pads and dressings soaked in discharge, and try to clean the areas of disintegrating flesh, and move the pain-wracked limbs. The Tibetan Book of Living and Dying is full of high-minded counsel about the bardos, but says absolutely zilch about how to support someone with cancer for months of swollen glands, gangenous bedsores, and untreatable nausea, who thinks people passing in the street are calling her a bad mother and a prostitute, and spits out her morphine because she thinks it is poison.

I lie in bed most nights and think of Dorothy, and breath in her pain and distress, and that of all the world, breathing out love and compassion to all suffering beings. As if! I occasionally think about when she dies, and what I can do to support her if I'm around, at her bedside (bearing in mind there are many others in the same home who need my help and attention). I'm not new to bedside deaths, I've been present at hundreds. I don't "do" anything ritualised or thought-through. Just take it as it comes. The Tibetan Book of Dying doesn't help me at all, it just seems stilted and artificial, like a 'cookbook' with a recipe by a cook who has never actually done much real-time cooking, just waiting at table. If I think anything at the time of death it's usually just, "That's it. It's over." And if there are relatives I do what I can to help them cope with the new situation they're in, which is only slightly different from the situation they were in before the death, except what they feared is over, and there's nothing to fear from it now, and they can relax. With a cup of tea.

Well, that's what is on my mind at the time of writing, and I thought I'd share it with you. Her real name isn't Dorothy, of course.

The picture at the head of this post is "By The Deathbed" by Edvard Munch

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