Sunday, 2 December 2012

Liverpool Care Pathway - And The Impredictabilities Of Diagnosis

The certainty of uncertainty in prognosis

This is a post on mytelegraph - 

My Telegraph » Blogs » cutley » slightly_grumpy


DECEMBER 1ST, 2012 23:05

What a Life – and What a Death

By cutley
Thousands of people die every day. The death of an eighty-five year old woman, unknown to the wider world, is hardly worth a mention.
But, when that woman was your mother, you tend to feel differently. When she was not only your mother but also a truly remarkable woman maybe, just maybe, others will also pause to spare a thought or a prayer for her.
My mother, Brigid, died at one o’clock this morning.
I am not seeking sympathy. But I do ask you to read on in the hope that I will be able to give you some idea of how extraordinary she was.
First, her life. Then her death.
You know her age already. She was born in 1927. Her father was a Fellow of All Souls, a journalist, an expert on wine and a lover of all things royal. Her mother would go on to become Chairman of the Inner London Juvenile Magistrates Court. Shortly before the end of the War she, Brigid, left school and became a nurse, looking after wounded soldiers. She always claimed to have been dreadfully incompetent at that job, though I have to say I have my doubts about that.
After the War her father introduced her to a young colleague of his on the Times newspaper. Both men were leader writers, though the younger was then appointed as temporary Paris Correspondent of the ‘paper. He was called T.E.(though always known as Peter) Utley. Like her father, Peter had a double First from an ancient University (her father’s was from Oxford – Peter’s was from Cambridge). It was the highest History First of his year at Cambridge (it was starred). On the face of it, you would say, a very eligible young man. But there was something different about him. He had been born blind in one eye. He had lost the sight of the other eye at the age of nine. He was totally blind. Not only was he blind; he was also as poor as a church mouse. In those days journalists, even journalists on great newspapers, were paid a pittance. And he had no private income.
Peter proposed to Brigid. It was a short engagement. They were married on All Saints Day in 1951. On the day before the wedding, Brigid cried. She was horrified at what she had let herself in for. But she cheered up. He was an Anglican. She was a Catholic. The Catholic church grudgingly gave its consent to the marriage, but no hymns, no music at all, were allowed at the ceremony.
About nine months later I was born. In pretty quick order, my brother and my two sisters joined me. Brigid had a poor, blind husband and four very young children. Perhaps I should make it clear that my father was not one of those amazing blind people who get around quite happily on their own, with minimum assistance from others. No, he was a very high maintenance blind man. He had to be escorted everywhere he went. His clothes had to be carefully put out for him. His bath had to be run for him. His food had to be cut up. He did claim to be able to make a pot of tea, but the enterprise could not be ventured without someone standing over him. And young children, I can now tell you from my own experience, can’t be left to fend for themselves. Brigid had her hands full.
We all take our parents for granted. I certainly did. I was really quite old by the time I understood that my mother was working a sixteen hour day, seven days a week, to look after us all. And it wasn’t just basic care. She would often have to spend some hours typing my father’s articles while keeping an eye on us. She cooked us exceptionally good meals, day in day out (and this was long before middle class mothers were expected to cook anything remotely edible). She gave endless dinner parties, often for rather grand and important guests. I am told that she taught me to read when I was away from my pre-prep school with some childish ailment (the school having failed miserably in that task). All the time we were living on a shoe string. And it was her job to make ends meet. I think I was aware, but only in a rather selfish way, of the money problems. If I was lucky enough to be given a 10s note as a birthday present by a godparent I knew it would have to be lent to my mother to enable her to buy some essential for family life. But I always got it back (usually on Family Allowance day).
As we got older, you might imagine, things must have got easier for her. If you do imagine that you have never had children. No, she had been given a life sentence. In about 1960 my parents thought it would be a jolly good idea (good for the children) if we moved from London to the country. Their only hope of financial stability was thus struck a tremendous blow. They sold our large house in North London, which had been bought for £5,000, for £4,000. We moved to Berkshire. At that time my father was freelance, though he worked exclusively for the Telegraph. Because he was not an employee his income depended on how much he wrote. He therefore had to work seven days a week. That meant getting him from Berkshire, near Newbury, to Fleet Street every day of the week. My mother coped.
We did, eventually, move back to London (to a rented flat in Paddington). I suppose things must have got marginally easier for my mother. But not all that easier. I was by then in my teens. And I now know I was a real pain. Fortunately, my brother and sisters were never as difficult as I was. But I was more than enough of a problem. By the time I dropped out of school at the age of seventeen any remotely normal parent would have given up on me completely. Neither of my parents did. Heaven and earth were moved to try to sort me out. And all the while there were younger children and a blind man to be looked after as well.
Of course, a time did come when we had all grown up (not sure I ever did) and left home. But, as children do, we still turned up for meals and comfort whenever we could. And my father was getting busier and busier. He became deputy editor of the Daily Telegraph (that involved editing the paper for three or four days a week so he would be in Fleet Street until very late at night – having to be picked up by mother at the end of the day). He was writing books as well, so he would dictate to her in the mornings before she took him into the office. When he wasn’t at the office he would be helping the then new leader of the Conservative Party, Margaret Thatcher, with speeches, going to meetings or dinner parties or having his own dinner parties. None of that could be done without my mother.
Please excuse an anecdote. One evening my parents went to Downing Street so my father could help the Prime Minister with a speech. They had supper with Mrs Thatcher and her husband in the kitchen of the flat at the top of the house. As my father and Mrs Thatcher discussed the speech, Denis and my mother talked of other things. He asked her, as people tended to, how long her husband had been blind. She gave the answer: since the age of nine. He seemed astonished. “Do you mean,” he asked, that he has never seen …” She expected the usual question (you mean he has never seen you). But that wasn’t his point. “Do you mean he has never seen Margaret?”
My father died in 1988. My mother did not rest. Her days remained as packed with work as they ever had been. She did voluntary work in a hospice. She ran the charity we had set up in memory of my father. She entertained endlessly (still cooking magnificent meals). Her door was always open to her children and grandchildren.
And she had that great blessing: very deep faith. She went to Mass every day. She kept that up until her health prevented her from going out.
One of the most delightful things about her was her sense of humour. It could sometimes be a little wicked, which made it even more fun. She wasn’t one of those devout women who think it is evil to see the funny side of life. She could be very funny when talking of the excesses of some religious fanatics.
I have already gone on too long. I must turn to her death.
Some years ago she had a dreadful car accident. She blacked out while parking her car outside her block of flats. She smashed into a wall. Both her legs were broken in several places. As she was recovering, tests were carried out. She was found to have bowel cancer. She had major surgery (given a 50% chance of surviving the operation). She survived. Then, earlier this year, it was found the cancer had returned. Nothing could be done about it. It spread to her liver. She remained at home. Then she went to my sisters’ house. In August (we were on holiday in Ireland) she slipped in the bathroom and broke her hip. The hospital was not prepared to operate (the risks were too great). She would never walk again. The cancer was advanced. She was admitted to the Trinity Hospice in Clapham. My sisters telephoned me in Ireland. The doctors thought the end was imminent. I flew back to see her. She was amazingly cheerful. I went back to Ireland and then returned with my wife and children.
That was the end of August. The doctors told us she might die at any time. We, her four children and our various children, visited her daily. My sisters took the brunt. They were at the hospice for hours every day. The older of the two seemed hardly to leave her bedside. But she battled on. Never did she fail to recognise any of us. She seemed to be smiling all the time. She knew, obviously, what was coming. But she just concentrated on being cheerful, and entertaining her guests. There were times, inevitably, when she became confused. But her confusions were all wonderfully amusing. She kept imagining she was preparing dinner parties. She would say she had cooked the food, but needed someone to get it out of the oven. Then she would look around her room in the hospice, see all her visitors (there were a great many) and turn to me. “Charles,” she would say, “our guests need drinks.” Fortunately, we always had wine or gin to hand out.
Then came the crisis. It was weeks ago. She became semi-comatose. The hospice put her on the Liverpool Care Pathway. We were told she was likely to die within hours. Three days later she woke up and asked for scrambled eggs. She was taken off the Liverpool Care Pathway. The smiling and chatting returned. The doctors and nurses were bemused.
A week or so ago she again became enormously tired. She was asleep almost all the time. But then, one evening, I visited and found her sitting up and reading a novel. It was by Maeve Binchy. She explained to me that people had often asked her whether she had read any Maeve Binchy. “I always say I have,” she said, “but I don’t think it’s true. So I’ve decided to read this one.” I stayed with her for abut an hour and a half. She read her book for the whole time.
That was last week. It was Thursday. On Friday morning the hospice told us her condition had deteriorated. We came in and spent the day with her. She was not reacting at all. Yet again, the end seemed imminent. But, yet again, she rallied. A doctor told me that she simply couldn’t predict what was going to happen, or when it would happen. My mother was defying science. She had already lived months longer than she should have done. Who could tell what she would do next.
My youngest child and I saw  her yesterday evening. She was distressed. She was trying to speak, but couldn’t manage it. But she saw my son and smiled beautifully at him. We kissed her as we left. She kissed us.
And then, at one o’clock this morning, the call came. She had just died. I got up, dressed and drove to the hospice. My brother and sisters were there. We stood round my mother’s bed. She looked very peaceful.  A nurse had put a single rose on her blanket. A priest from the local church (who had also been woken by the hospice) arrived and read some prayers. We said goodbye to a truly remarkable woman.
May she rest in peace.

No comments:

Post a Comment