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Not Dead Yet: A Manifesto for Old Age
Julia Neuberger
Why we need to be better at ageing…Julia Neuberger addresses the question of what life will actually be like for us as we get old, and suggests answers for making our later years as good as when we were young.Britain is getting old – and fast. Due to the combination of a decline in birth rates and an increase in life expectancy we are rapidly heading towards a crisis – in health, housing, finance and long-term care.Despite this seismic shift in our demographic makeup, the way we view and treat the old has barely adjusted. It is shocking, for example, that despite less than 1 in 20 British people wanting to reside in a care home in their old age, 1 in 5 die in one.It is time that we examined how we look after ourselves as we age – and address the issues that when young we take for granted as a right, not a privilege.• Why is housing not being built so that the less mobile amongst us can continue to look after ourselves for longer?• Why when we have so much experience and no less intelligence are we not able to find work which benefits everyone?• What are we supposed to do for fun? There must be more to life than bingo and bowls!• Why is our approach to care so poor? If we neglect carers, will they not neglect us?The opportunity to make life better as we age is being missed, but not necessarily because the solutions are so difficult… Are we even asking ourselves the obvious questions?How I want to grow old is a call to arms – a manifesto on age that aims to change the way we think and to galvanise ourselves into action.
Not Dead Yet
A Manifesto for Old Age
Julia Neuberger
Dedication and acknowledgements
I could not have written this book without the extraordinary help and support of Ros Levenson, whose idea it was in part, who conducted much of the research, argued with me, briefed me, and generally helped me make it happen. Nor would it have been possible without the dedicated work of David Boyle, who took an unedited sprawling text and turned it into English – not to mention into manageable prose – as well as arguing through some of it at a late stage, and clarifying my ideas considerably. The team at HarperCollins has been supportive as ever – without Carole Tonkinson, Natalie Jerome, Jane Beaton and Belinda Budge, this volume would never have seen the light of day.
Huge thanks are due to my agent Clare Alexander, as well, dispenser of wise advice, firm encouragement, superb ideas, and lots of wine and sympathy, and to my assistant Paola Churchill, referred to by my whole family as ‘my boss’, because she tells me what I have to do, including finishing this book.
But this book would not have been possible without the help and support in quite other ways of my beloved parents, Walter and Liesel Schwab, wise to the end, whose old age I lived through with them and for them, of my uncle, Harry Schwab, and of my mother-in-law, Lilian Neuberger, who aged with astonishing grace and died at 94 whilst this book was in preparation. So Not Dead Yet is dedicated to their memory, as well as to my thoroughly alive and feisty aunt Anne Schwab, who is busy proving how effective you can be in old age – a lesson to us all.
When I was eighty-seven
they took me from my coffin;
they found a flannel nightshirt
for me to travel off in.
All innocent and toothless
I used to lie in bed,
still trailing clouds of glory
from the time when I was dead.
The cruel age of sixty-five
put paid to my enjoyment;
I had to wear a bowler hat
and go to my employment.
But at the age of sixty
I found I had a wife.
And that explains the children.
(I’d wondered all my life.)
I kept on growing younger
and randier and stronger
till at the age of twenty-one
I had a wife no longer.
With mini-skirted milkmaids
I frolicked in the clover;
the cuckoo kept on calling me
until my teens were over.
Then algebra and cricket
and sausages a-cooking,
and puffing at a cigarette
when teacher wasn’t looking.
The trees are getting taller,
the streets are getting wider.
My mother is the world to me;
and soon I’ll be inside her.
And now, it is so early,
there’s nothing I can see.
Before the world, or after?
Wherever can I be?
‘Run the Film Backwards’, Sydney Carter
Introduction (#uef004ae7-4e73-5f4c-93b4-6ae9ead8e937)
Run the film backwards (#uef004ae7-4e73-5f4c-93b4-6ae9ead8e937)
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.
The manifesto
This is the shape of the manifesto, and I will put some guts to it as each chapter goes by. Each chapter will end with a call to arms. What I want to see is an emerging ‘grey power’ movement, including all of us – old, young and middle-aged – who can make this happen. The chapters correspond to the key areas which need to be tackled:
1 Don’t make assumptions about my age: end age discrimination
We need to have a clearer idea what constitutes a successful old age, and a sense of how that might differ from person to person. The mechanistic and medical definitions of professionals clearly don’t sum up what might be very different experiences of various levels of physical ill-health and disability. Real people break out of those definitions but policy still traps them there.
That has to be set against new pictures of how we age and what we do at what stage of our lives. The age at which we have children is changing. Is 50 the new 30? Rates of teenage pregnancy in the past 20 years have never been higher in the modern era, but at the same time many women are delaying having their babies. The number of women having children in their thirties and forties has climbed steadily over the last 20 years, at a time when the overall birth rate has been dropping. In 2003, the fertility rates for women age 35–39 and over 40 both increased by almost 8 per cent.
As women may now be able to – and choose to – conceive well into their fifties and, eventually, perhaps beyond, older women may have sons and daughters who are going through the throes of adolescence or establishing themselves at work just at the time when the older person might need a bit of help, unless we are to live so much longer that dependent old age will not hit us until we are 95 or more. Indeed, from some 8,000 of us who reached 100 in 1997, there will be 30,000 or more in 2030 – and that is a relatively conservative estimate.
But it is easy to be blinded by the figures if we have no clear idea about what old age means, what we want from it, and how to get it, especially as we are likely to be treated – when the time comes – as if we have no opinions on the subject and are happy to sit in front of the television in our care homes.
2 Don’t waste my skills and experience: the right to work
Then there are those issues about getting out into the world and playing an active role, which appears to be a basic human need at any age – and starting with the vexed question of appearances. Older people, and especially women, are always complaining about shops having no proper clothes for them, about how they hate communal changing areas – and swimming with younger, fitter people – and how they are always scared of being regarded as mutton dressed as lamb.
Any manifesto must insist on decent and accurate mirrors in shops, sales staff who are old enough to understand, single changing rooms, an alteration hand, and a decent range of clothes for the over-sixties. In exchange, older women would buy better clothes, check carefully that they were always well groomed – and therefore not ‘invisible’ as so many often complain – and keep up to date with emerging trends, as interpreted for older people.
The role models would be Joan Bakewell and Judi Dench and many, many more. But the fact that women are older – and men for that matter – does not mean they are not interested in their appearance, or that attractiveness and sexual attraction have disappeared. And headlines that suggest there was a plot to oust Menzies Campbell as Liberal Democrat leader for ‘looking too old’ are precisely those that depress, and anger, older people (he was a youthful 65 when that headline was published). It was particularly galling that the source who said this to the Evening Standard was quoted as adding: ‘It’s not that he is too old, it’s just he looks too old …’
That relates to getting out to work, but how many older people are going to continue to work into very old age? Should they have to? Is it only because pension provision and savings are so poor in the UK, or is there a better, or different, reason for older people working, to do with work giving meaning to life? And will that be full or part time? And will it be at the same status as previous jobs and careers, or at a lower status, however grand the title, as they often manage in the United States?
People want to be visible. Some older people want to work, some will need to because of the money, and many will need to be volunteers. What is essential is that older people are visible and welcome and being active. But that means adapting the rigid rules that now govern when they are allowed to do so, and bear little or no relationship to their actual abilities.
3 Don’t take my pride away: end begging for entitlements
Then there is the question of money. The finer points of pensions are too abstruse and obscure for this kind of book, but what might older people expect as a basic minimum income, what might they be expected to pay for care out of that, and what things should be provided free or cheaper because people are older? Also, what is a reasonable proportion of wealth that should be left to our children?
Old age is not what it used to be. More of us will get there, and it is likely to last longer for most people than it used to. Better health and lower death rates mean that each successive generation is more likely to reach 65. Men now in their forties are nearly 90 per cent likely to collect their state pension, and the likelihood for women is over 90 per cent.
The concept of a long retirement is fairly new. The original state pension was set with a starting age where people were expected to live a few months or years, rather than several decades. This scenario of being retired for decades has many implications for financing old age, and that is where the political debate has tended to be. But it has equally important implications for people making choices about how they want to live, as well as around the support they may require. All over Europe, parents also want to pass their wealth onto their children and the children expect to inherit homes.
There are huge disparities and inequalities in income and wealth for older people. Some of this is sudden, brought about by old age and inadequate pension provision. In other circumstances, we see poor older people who have been poor all their lives, and then the question is whether we should try to redistribute older people’s income to alleviate the worst of the misery in older old age.
Meanwhile, governments around the world, and particularly in Europe, are concerned at the effect the pensions ‘time bomb’ will have upon the wider society, and are using rhetoric that seems to blame older people for staying alive. Older people are becoming angrier about broken promises around financial and other support in old age, although arguably not angry enough, and younger people are beginning to fear what has hitherto always seemed to them to be impossibly far in the future.
4 Don’t trap me at home because there are no loos or seats: reclaim the streets
Then there is the question of access to life, like the problem of transport and getting from place to place. Older people fill our buses and use their Freedom Passes with pleasure and abandon. What would an ideal transport system look like for older people when in rural areas many find it difficult to go anywhere if they do not drive, and in cities and towns there are still shortages of accessible transport, despite disability legislation? What would ideal transport look like? Would it be taxis, private car pooling, rental of wheelchairs in busy places, better access to buses, better and safer places to wait and sit at stations and bus stops?
Younger campaigners might find it awkward to talk about, but there is no doubt that the issue of public loos – as well as park benches, park attendants and seats in shops – are absolutely central to the way older people are being excluded from our town centres. Certainly, older people need to feel safe, given that many public spaces in cities feel as if they have been given over or abandoned to the young and disaffected. But unless there are adequate loos there as well, many older people feel they dare not leave their homes and go shopping. But because there seems an element of bathos about even mentioning it, nothing is done.
5 Don’t make me brain dead, let me grow: open access to learning
What would it look like if education and educational activities were geared more to older people? Not only degrees, or the University of the Third Age, but specialist courses such as stone carving, pottery, art programmes and other things which could continue into very old – and possibly very frail – old age. Will university charges for degrees be reduced or waived for the very old, and should they be? Can older people get scholarships?
How can education work when some older people have problems with vision or hearing, and how well-adapted do universities and colleges, and general classes, have to be to help people hear and see all that is going on?
A fully inclusive educational programme might be geared less to future employment and more to the idea of education as fulfilment, as a goal in itself, to enrich one’s life. So the instrumental view of education policy in many education authorities will need to be seen through a different, holistic lens that implies that education could and should be for its own sake.
6 Don’t force me into a care home: real choice in housing
There is the basic question of accommodation, including people’s own homes, sheltered housing, or – if things get rough – nursing homes and care homes, much feared by many older people and often rightly so. Nobody wants to give up their home and go into a ‘home’. Yet questions about why we are still so bad at providing care at home, particularly – and maybe understandably – for older people with Alzheimer’s disease, still need answering.
Fewer than one in twenty people want to spend their final days in a nursing home, yet one in five deaths takes place in those very places. We ought to be asking ourselves whether this is fair or right. Equally, there are questions around fitting homes for people who do become more frail and more disabled: why are architects and designers not putting real energy into designing for age? Why do older people seeking co-housing or mutual solutions find it so hard to make them happen, when they are commonplace in the USA and continental Europe?
7 Don’t treat those who look after me like rubbish: train and reward care assistants properly
