Читать книгу Not Dead Yet: A Manifesto for Old Age - Julia Neuberger - Страница 4

Run the film backwards

It is a stabbing irony that as we become an elderly country we ignore the elderly with ever greater ferocity: if you don’t look at the Ghost of Christmas Future, maybe it will never come.

Johann Hari, Independent, 19 January 2006

Dove contacted the manager of the sheltered accommodation where I live in Stoke Newington to see if there was anyone suitable. He told them about me and the casting director came round, but when I answered the door she pushed past and said, ‘Is your mother here?’ She didn’t believe I could be 96 … I was in Paris a fortnight ago, posing for a fashion magazine. Can you believe it?

Irene Sinclair, 97, the face of Dove soap

I am an only child, and I cared for both my parents as they got older and frailer. First, it was my father, though my mother did most of the caring, and talked constantly about how it was always the women who did the caring, and the women who were left behind. Later on, after my father’s death, I cared for my mother, by then exhausted after looking after my father as he became sicker and more difficult. She had five more years as a widow, most of that time in extreme ill-health.

My experience – and that of countless friends and acquaintances – emphasizes both the best and the worst of caring for older people, and the way they are treated. It also makes it clear, if anyone had any doubts, that my mother was right. Benjamin Franklin first said: ‘All would live long but none would be old’, and he was right too. Or, as my mother put it: ‘Don’t get old – it’s not much fun.’

There were good reasons why her final years were difficult. She was suffering from a rare chronic disease called Wegener’s Disease, so rare that neither she nor I had ever heard of it before. As she became more infirm, she was very impatient about what she could no longer do. She became impatient with not being able to go back to work, feeling that her life now meant little. Certainly my mother was well cared for, and said so repeatedly. She even left us a letter saying so after she died. Yet she was miserable, felt superfluous, and could see no role for herself. This feeling seemed to be only partly linked to her health. She was very active and had large numbers of friends, but she still felt superfluous. Neither her friends, nor her grandchildren, nor her wider family were quite enough.

After she died, thinking over these things, I began to worry a great deal about the kind of society we have become, that allows older people to feel so miserable even when we try to provide all the care that they can need. It began to make me angry when I realized that she had been affected by the prevailing cultural view of people being old. She really felt, somehow, that she wasn’t being noticed.

If that was the case, she didn’t say so exactly. She kept saying that she had to go back to work. She had worked all her adult life, until she was 70. After that, she did a little bit of dealing in pictures, and was never somebody who did nothing. She seemed to feel, because she did not ‘work’ in the conventional way, that she had become a non-person. My experience since suggests that this feeling is very widely shared.

As the time passed after my mother died, the questions nagged away at me. I chaired an NHS trust that worked a great deal with older people, and – although the care was generally good – I found myself asking why older people’s care had to be separate from other people’s care. Of course older people tend to have multiple chronic issues, and there might be reasons why these should be treated together. Yet, in many parts of the UK, you get better care if you have a stroke when you are young than when you are old. There really is no excuse for that. It suggests that we think that lives are worth more when you are younger.

Also, why should my mother have felt so sidelined by society? Older people often used to feel they had an important role. They were the wise in society, the imparters of knowledge and experience to grandchildren. They provided stability in families that were troubled, and were often the carers of even older people, as well as being providers of comfort to those who were in pain or discomfort themselves. Other societies claim to maintain that role for older people. Some even manage it, some of the time, for some older people. But in modern Britain, those days seem to have gone completely. For my mother to argue that she wanted to return to work at the age of 82 means that she could not see what else there was for her without conventional paid work, in a culture that is increasingly obsessed with work.

Work gives purpose and meaning in our culture. We have failed to find the key to being less active, economically or purposefully, and still find meaning in life. ‘What do you do?’ is the question of choice, rather than ‘Who are you and what are you like?’ There was no clear way for my mother to be simply my mother – Liesel Schwab – with all her expertise in art, her stories of life in Germany before the war, her accounts of being a refugee in London during the war, and her first few months in Birmingham before that. Her life, with its rich history and her hundreds of friends, was just not enough to satisfy her.

So my recent experience as a middle-aged carer of older people has convinced me we have got it wrong. More and more, it has made me feel we demean older people even when we do the best we possibly can under our present system. We make them feel worthless, past it, of no use, superfluous, as if they should have died years ago. When we give them help, we do things for them, rather than with them. More than anything else, this has made me question what it is to grow old in modern Britain and what it means to be an old person where old people are numerous and seen as a burden. It has also led me to ask whether we could make it any different.

I am certainly not the first person to formulate the questions in this way. Some of those conclusions have almost become truisms. Yet why are some of the basic changes that could be made, the most obvious ones – often relatively easy to achieve – still not being done? That, I believe, is what makes this book a little different. It recognizes that there are reasons, beyond the inadequacies of health policy or pensions policy, why we accept the inhuman situation for what it is, that we accept treatment for our older relatives that would cause an outcry if it was meted out to any other sections of society. It tries to stitch some of those reasons together and to come up with a practical way forward.

Because the real question is why we put up with this situation. If we look at our care system, still largely based on the Victorian Poor Law approach – assuming that the recipients should be grateful to get anything at all – we have to wonder why we don’t get angrier about it than we do. We have to ask why we so rarely get furious about it, why we put up with it for parents and relatives and, unless we act quickly, for ourselves.

One of the experiences which opened my eyes almost more than anything else was the more recent decline of my uncle. He was Jewish, very orthodox, and gradually found himself unable to cope. It was never clear quite what was wrong with him, but he was becoming incontinent, and on the hospital ward kept on pulling his clothes off.

He would never have allowed anyone to see him naked, if he had been himself, and it was extremely distressing for us to see him acting in a way that was totally against every rule he had lived his life by. But when we raised this with the ward staff, they just said: ‘Oh, we put clothes on him and he just takes them off again.’

They were not under-staffed. They could have asked about who this person they were treating was, and what he would feel about being allowed to wander around naked. If he kept taking his clothes off, then they ought to have discussed some practical solution, by sewing him in or clipping them on in such a way that they could not be taken off. They had objectified the people in their care, and had no sense of and no interest in who they were.

Of the four institutions which cared for my uncle before he died, one was different, and was the proof for me that something different is possible.

This was a London teaching hospital, about four miles away from the one which had performed so badly. It was very short-staffed, but my uncle was treated with incredible kindness before he finally began to slip away and became unconscious. Even then, the staff were going up to him and talking to him in case he could still hear. They didn’t patronize him by calling him ‘Harry’. It was clear to them that the person they were treating was a rather dignified old man, and they treated him as such.

But this story of inadequate, patronizing and inhumane care at the very end of life is reflected in the years before. What I want to do in this book is to look behind the immediate questions – why, for example, specific care is so poor – to ask something more fundamental. Is life as an older person in Britain today much fun? Are we thinking completely incorrectly about old people anyway by lumping them all together when, like everyone else, they could not be more different one from another? Does the state have a case to answer, or have old people themselves not been sufficiently voluble in the debates about pensions, care and costs?

This investigation is intended as a manifesto for old age. It asks whether, if we had ‘run the film backwards’ from old age to youth – as Sydney Carter suggests in his poem at the beginning of this book – we might see it all very differently. It also assumes that a generation will emerge, even if we are not quite there yet, which will simply not put up with what we have now. They – certainly we – will be impatient with excuses, demanding of services, demanding of other people, and, in short, as near an approximation to grey power as we are likely to see in the UK. We need to look inside ourselves and see why it is we accept such cruel and miserable lives for so many of our older people, our parents and – at the rate we are going – for ourselves. Many people lead wonderful lives as they get older. But when people don’t, and when they end their lives in misery and degradation, it is we who allow it to happen.