Not Dead Yet: A Manifesto for Old Age

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

Then there is the question of care and support. Many older people need no more care and support as old people than they did when they were younger, but many do. Those with more money tend to buy that care in from private agencies. People with fewer resources are very dependent on local authorities, even though local authorities charge for the care they provide. What should be the quality of care provided in people’s own homes or elsewhere?

How would we make it better, and how can we make sure there are no more stories about care workers coming to put people to bed at 6 p.m. or earlier? How can we teach local authorities that you cannot ask care workers to visit three or four older people in an hour, hour after hour, and carry out important personal tasks like toileting and putting people to bed?

What would care look like, if it were what people wanted, and what care workers often want to give, rather than what they get now? Indeed, what would it look like if those who look after old and frail people in their own homes, in sheltered housing or in care or nursing homes were treated quite differently? Care staff are poorly paid, poorly regarded, and have poor self-esteem. Perhaps the question that we should really ask is: what possesses us to leave our nearest and dearest in their care? And why are we not making a bigger fuss about the fact that care workers are badly paid and poorly regarded when often they do the most important, and often most difficult, of tasks?

8 Don’t treat me like I’m not worth repairing: community beds and hospitals

There are certainly questions around health and healthcare, and how they operate for older people. How are decisions made, and who makes them? Who decides if older people are reasonably fit or not? How seriously are older people’s own views about their state of health listened to? How far is it possible to get good generic care, without seeing too many specialists, as an older person? How easy is it to provide much of the care oneself? Who makes decisions about whether one should go for aggressive treatment or not? And how is it possible that hospital wards are so full of older people, of whom many seem to have no business to be there?

Would an ideal health system for older people look quite different, and have different rules? If so, would it be based on people’s own advance directives and clear views about what they wanted themselves?

9 Don’t treat my death as meaningless: the right to die well

We can hardly avoid the question about whether people can be allowed to reflect on meaning in life, and ultimately preparing for death. This is a curious section for the manifesto, but is essential: I have heard so much about how little space we allow for people to listen to older people making sense of their lives, telling their stories, recording life’s meaning, one way or another. If you are perceived as useless, beyond your sell-by date, a ‘wrinkly’ with nothing to contribute, you will not be able to give voice to how your life has been, to make sense of it, to think it through, reflect on lessons learned, and plan for what you still want to do and what will be left undone, and how to come to terms with a certain amount of equanimity with one’s impending death.

Some would call this space for spiritual awareness, and it is true that some people would find what they are looking for in this area in the churches and other faiths. But it goes further: we all need to make sense of our lives. We all need a sense of purpose, and indeed a sense of past and future.

Sydney Carter looked back at his life and ran though it, looking at himself at different ages and stages. For some of us, that is the way to do it. For others, it will be one particular aspect of life that will need emphasizing. Counsellors in hospices, and other staff in hospice and palliative care settings, often talk of how people try to put their affairs, and themselves, in order before they die. It cannot be beyond the wit of man and woman to invent or reinvent a space for this.

There are also questions about pain relief, and whether we recognize pain adequately – that pain is not always physical pain, but also spiritual, emotional and psychological pain. Dying people, most of whom are old, are enormously disadvantaged in our society, despite the relative popularity of hospices as a charitable cause. We have a tendency to shove dying people off to hospital rather than keeping them comfortable in their own space, and letting them die quietly at home. In the same way, why do we prefer invasive treatment – drips and forcible feeding – rather than gentle, hand-holding care?

10 Don’t assume I’m not enjoying life, give me a chance: grey rage

Finally, part of this manifesto has to be the means to achieve all the rest, why we need to get angry and why we need a grey power movement to make it happen. Without this, discriminating against older people, and treating them less than well, will almost certainly continue. There is also a great deal to get angry about. People still have to sell their homes to pay for their care – opinions vary about whether that is reasonable – and people still get poor care when they have sold their homes, being moved time and again as nursing and care homes close. We still face violence against older people, far more than violence against children, but it barely makes the newspapers. Despite the brilliant stories of successful old age, we still allow so many older people to be ignored, degraded and driven prematurely into decrepitude and death.

There is no reason why older people should not be a very powerful generation. A long old age means that older people are significant consumers of a huge range of services, so their needs and tastes cannot be ignored. Politicians, one might have thought, need to heed the priorities of older people, not least because they turn out to vote more than younger people.

In fact, the pre-election period before the May 2005 election put older people on the political agenda for the first time. But they were neither sufficiently high on the agenda, nor taken seriously enough. It was also a disappointment to find that, despite the Conservatives’ attempt to raise it, the pensions issue never really took off as central to the election campaign. Nor did long-term care, which has been a source of such resentment for many people; or even palliative care. All the parties said they would spend more, but no one said – as they should have done – that palliative care would be available for everyone who was dying, whatever condition was leading to their death.

But to start to use this latent consumer and political power we are going to have to deal with a whole range of hurdles. The media tend to go for stereotypes at the extreme – either the parachuting granny (isn’t she amazing!) or the helpless and neglected old dear (what a tragedy!). For most of us, most of the time, we are neither parachuting, nor helpless – though some of us will have some time experiencing both phases. We need to find ways of breaking out of the traps that the stereotypes represent.

There is a range of obvious exceptions to start with. Older prisoners, older people who cannot get on with their families or neighbours, and older people who abuse vulnerable people, often their equally old partners, are not always the easiest to get along with, or even to provide services for. None of those fit the stereotypes. Nor do those older people who choose to live itinerant existences, travelling from place to place, staying only briefly, having no permanent roots and seeming to shy away from any kind of family or social involvement. Then there are those who move away for retirement, perhaps to a long-remembered, much-loved place associated with holidays as a child, despite the warnings of how difficult it is to make real friends as one gets older, and then proceed to lose touch with everyone they knew before, without making strong bonds in their new homes. Perhaps those are entrapping stereotypes too.

The stereotypes are the subtle ones that lead us to regard old age with fear and dread. Denial is a common response, both for people about to attain old age and for those who should be helping to plan services to meet their future needs. So time and again, when financial pressures hit health or social services, it is services for older people, community services, that get cut first. Less dramatic than closing acute wards, less vulnerable to bouts of shroud waving and cries of loss of life, the cuts of services to thousands of older people have a devastating effect. But because they do not feature in the planning, because of our habit of denial of getting old, being old and needing ‘that little bit of help’, those are always the first services to go. As the Guardian journalist Ray Jones put it so forcefully: ‘A spiral of deteriorating performance is … being created, with disabled and older people themselves being trapped in the vortex.’1

But that negativity seems to be shared by older people themselves. Research for the King’s Fund suggested that people find it easier to discuss their wills than to discuss their care requirements with their families.2 It is the same old fear and denial.

What is this about? Is it to do with our idea that human worth has something to do with economic productivity – and very narrow definitions of productivity too? We need to answer that question seriously as a society, and other questions too:

 Do we want to live in a society that does not take old people seriously, when so many older people are saying that at the end of their lives they become meaningless, and then they die?

 Do we think it acceptable to disregard people’s wishes about where they want to die?

 Do we want to have, as an answer to extreme old age for some at least, euthanasia or assisted dying?

 Are we prepared to take on enough of the load of caring for extremely old and disabled people ourselves? Since we will never get any care system fully staffed, nor, probably, be prepared to pay for doing so even if the staff were available, this must be a young people’s issue as well.

 Finally, are we ready to make a fuss about how people dying of anything other than cancer are treated?

We need to answer those questions because, if we can’t, the misery will be greater, the anger will increase and we will be unable to do anything about it. That is why I have drafted this book in the form of a manifesto which answers those questions as I believe they must be answered. There will also be stories and care studies to illustrate the present position, plus some examples of what it might be like if things changed and we got the points in the manifesto recognized and acted upon.

I think this is a major political issue of the future, and a question of the kind of society we want to live in. Taken separately, many of the issues raised in the chapters that follow have been said before, but never quite angrily enough. We already have campaigns by the Observer and Mirror about dignity in old age. But they blame the healthcare system, which is simply looking at the symptom. The healthcare system is the way it is because we accept it – because many of us believe that, really, this abuse is OK.

The image of the old crone eking out her existence gathering sticks, bent double in freezing conditions, living in desperately poor housing, has largely disappeared from our consciousness – and so it should have. Yet perhaps it should not have disappeared completely, because we live with a modern version of that cruelty and neglect that may be different, but is just as shocking. The grey power campaign starts here and now.

Notes

Introduction

1 The Guardian (2006), 4 Jan.

2 King’s Fund (2001), Future Imperfect?

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