There's Nobody There: Community Care of Confused Older People [Reprint 2016 ed.] 9781512818321

Table of contents :
Contents
Acknowledgements
Preface
1 Introduction: Siting the Study
2 The ‘REACH’ Study: Method and Texts
3 Becoming a Caregiver
4 ‘The Common Round, the Daily Task’: Caring in Everyday Life
5 Caring for Caregivers: Informal Support Networks
6 Caring for the Caregivers: the Provision of Formal Support Services
7 Conclusion
Bibliography
Index

Citation preview

THERE'S

NOBODY

THERE

Community Care of Confused Older People

University of Pennsylvania Press Studies in Health, Illness, and Caregiving Joan E. Lynaugh, General Editor Barbara Bates. Bargaining for Life: A Social History of Tuberculosis, 1876-1938. 1992. Janet Golden and Charles Rosenberg. Pictures of Health: Photographic History of Health Care in Philadelphia. 1991.

A

Anne Hudson Jones. Images of Nurses: Perspectives from History, Art, and Literature. 1987. June S. Lowenberg. Caring and Responsibility: The Crossroads Between Holistic Practice and Traditional Medicine. 1989. Elizabeth Norman. Women at War: The Story of Fifty Military Nurses Who Served in Vietnam. 1990. Anne Opie. There's Nobody There: Community Care of Confused Older People. 1992. Elizabeth Brown Pryor. Clara Barton, Professional Angel. 1987. Margarete Sandelowski. With Child in Mind: Studies of the Personal Encounter with Infertility. 1993. Zane Robinson Wolf. Nurses' Work: The Sacred and The Profane. 1988.

THERE'S NOBODY

THERE

Community Care of Confused Older People

ANNE OPIE in association with LEON FULCHER, GARY HAWKE, and NATALI ALLEN

Ujiji University o f Pennsylvania Press Philadelphia

Published 1992 by Oxford University Press Published in New Zealand by Chford University Press, Auckland First published in the United States in 1992 by the University of Pennsylvania Press Copyright © Anne Opie 1992 and Oxford University Press 1992 All rights reserved.

Printed in New Zealand ISBN 0-8122-1419-6

Contents

Acknowledgements

vii

Preface

ix

1 Introduction: Siting the Study

1

The Significance of the Study The Gendered Semantics of Community Care Demographic Factors The Relationship between Formal and Informal Care Providers

1 6 13 18

2 The R E A C H Study: Method and Texts

23

Methodological Issues The Participants Interviewing The Analytic Process: Sorting, Ordering, Interrogating The Analytic Process: Analysis of Caregivers' Accounts as Texts Research and Empowerment

23 27 33 39 42 49

3 Becoming a Caregiver

53

Gender/Knowledge/Caring The Decision to Care Beginning Caring Employment and Caregiving The Needs of the Confused Older People

53 57 70 78 83

4 'The Common Round, the Daily Task . . .': Caring in Everyday Life

85

Caring and Health The Labour and Practice of Caring Caring and Affect 'The Common Round, The Daily Task . . .' Gender, Stress, and Positioning in Caring

86 88 95 100 107

5 Caring for Caregivers: Informal Support Networks

122

Social Networks/Community Support Family Support of Caregivers Support from Husbands Support from Siblings Support from Caregivers' Children Family Support and Carer Substitution Informal Support: Friends Informal Support: Neighbours

122 124 127 131 133 134 137 141

6 Caring for the Caregivers: the Provision of Formal Support Services

144

Accessing Services Service Provision to Caregivers Caregivers'Contact with GPs Assessment Processes Caregivers' Contact with Social Workers Caregivers' Contact with District Nurses Day Care Services Support Groups for Caregivers Intermittent and Respite Care Services Caregivers' Evaluation of Service Requirements

144 147 151 154 162 166 167 170 174 181

7 Conclusion

184

Issues in Informal Caregiving Principles of Informal Caregiving Developing a Supportive Relationship with Caregivers Implications of the Partnership Paradigm

184 186 195 206

Bibliography

208

vii

Acknowledgements I am indebted to many people for their assistance with this project. My foremost debt is, I think, to the caregivers w h o participated in the study. Without their preparedness to allow me an entry into their lives, their generosity with their limited free time, and their willingness to provide me with an appreciation of the complex, and at times tortuous processes of caregiving, this book would not have been able to be written. I would also like to thank the staff and voluntary workers of the local agencies and community organizations for the time they gave in initial discussions about the project and for their generous assistance in introducing me to the caregivers w h o took part in the research. Thanks and gratitude are due to Margaret Werry and Sylvia and Natalie C r o w e for their valuable and careful work on the transcriptions of the taped interviews. Typing up and making sense of taped interviews is a difficult and time-consuming task, and one whose importance to the completion of the project is often overlooked. I also want to thank the secretarial staff at the Institute of Policy Studies w h o printed out a considerable amount of data and various drafts of the manuscript. Alex Heatley, of the Computing Services Centre at Victoria University, produced the two diagrams. A number of people gave their time to the initial stages of the project. T h e research group would like to thank Dr R o n Barker for his work on an initial bibliography of N e w Zealand research on older people; Professors Rebecca and Shimon Bergman from Tel Aviv University, Israel, w h o helped facilitate a series of consultations with N e w Zealand professionals, policy makers, and community groups working with older people, and Professor Michael Clinton, w h o was associated with the early stages of the project. Particular thanks are also due to Leon Fulcher, Gary Hawke, and Natali Allen for their support throughout the project and for their comments on drafts of this book. However, the interpretation of the data and the conclusions drawn from those interpretations, including their application to social policy, are my responsibility. Friends and associates offered much valued support and shared ideas with me during the life of the project; others read and commented on drafts of chapters and on the final manuscript. In particular I want to thank Maureen Bobbett, Linda Dawkins, Anne Frood, Jean Gilmour,

vm Dinah Hawken, Margie Martin, Robyn Munford, Marion Pybus, Heather Roberts, Claire Toynbee, Verna Schofield, and Kevin White. Dr Rima Apple, of the University of Wisconsin-Madison, was a valuable contact in the United States. My debt to my family is considerable. I owe a great deal to my husband, Brian, who at all times has offered unqualified interest, support, and endorsement. Despite his own commitments, he was always prepared to discuss at unfriendly hours a range of issues associated with the project, and to bring his energy and interest to the analysis when my energies were flagging. His readiness to take over my share of the domestic tasks for different lengths of time was also a great help. I also want to thank our children, Rachel and Joss, who helped by being around and who tolerated my various periods of gloom, anxiety, and bad temper with remarkably good humour and understanding. Lastly, the other members of the research group and I wish to thank the University Grants Committee and the Internal Grants Committee of Victoria University of Wellington for their assistance in the funding of this project. Anne Opie Wellington

IX

Preface It is not always easy to say when a research project actually begins. T h e appointment of two new Victoria University Professors, one in Social W o r k and the other in Nursing Studies, clearly provided impetus for the research reported in this volume. T h e personal and professional challenges associated with taking up senior academic posts in N e w Zealand were substantial for both Professors after having worked extensively in United Kingdom universities and the health and social services. Having decided to work together in addressing some of those challenges, Professor Michael Clinton and I approached Professor Gary Hawke as Director of the Institute of Policy Studies with an idea which eventually became k n o w n as the Research with Elders and Carers at H o m e ( R E A C H ) Project. T h e Project evolved over four yean, during which time it changed considerably from its original conception that sought to investigate the needs of elderly people with severe mental illness. T h e research focus developed out of demographic studies which drew attention to the increasing proportion of older people w h o are very old and living in their own homes rather than in residential care. T h e more disabled of these older people represent a major dilemma for Western societies as communities are forced to assume responsibility for the social and physical well-being of their elders. While the majority of older people live active lives and maintain themselves in their own homes without much assistance, a growing number of older people find it difficult to do so. Spiralling costs of housing and of social and medical services leave many older people and their families in a state of crisis, with no alternative but to seek state support or assistance. Social workers or nurses are often the people w h o provide that support. Funding was obtained from the N e w Zealand University Grants Committee for the appointment of a Postdoctoral Research Fellow to initiate this research. While awaiting an appointment, the planning group obtained additional funding from Victoria University and the Department of Health to employ a former Director of Health and two Professors of Gerontology w h o helped refine the research focus. D r R o n Barker compiled a bibliography of N e w Zealand research carried out between 1972 and 1985 on the condition of older people. Professors Rebecca and Shimon Bergman from Tel Aviv University helped

X

facilitate a series of consultations with health practitioners, social workers, policy makers, and community groups working with older people. T h e aim of these consultations was to assess what those involved in this field considered to be the greatest need for research. T h e consultation highlighted the need for a consumer-oriented study which gave priority to the needs of confused elders at h o m e and their carers. It was at this stage that Natali Allen, a nurse with practical experience in the field of gerontology and a Senior Lecturer in Nursing Studies, joined the Project team. In 1989, nearly t w o yean after the funding for the Project was confirmed, Anne Opie joined the Project team as a Postdoctoral Research Fellow in Sociology and Social W o r k . Dr Opie, a qualified social worker with practical experience in four different countries, soon became the Project's driving force and inspiration. Dr Opie had employed qualitative research methods in her P h D study of another aspect of family life, methods that were considered valuable in the development of gerontological research. W i t h o u t Dr Opie's commitment and determination, the work of the R E A C H Project reported here would not have seen the light of day. Although Michael Clinton left the Project shortly after it began to take up another position in an Australian university, his contribution to the research during its early stages helped to establish the revised focus and refine the sampling strategy. With Dr Opie's appointment, the research moved quickly in the direction reported here. Rather than continuing to focus on the severely mentally ill, the focus was redirected towards the needs of elderly people w h o were severely confused, thus focusing particularly, but not exclusively, on those w h o suffered from dementia. This decision reflected demographic estimates of a significant increase in the rate of dementias associated with an ageing population. A further decision was made to study the impact of caring for a confused parent or spouse on the everyday lives of family caregivers. This decision was made for two reasons. Firstly, we were struck by h o w little is k n o w n about the everyday lives and routines of caregivers. T h e research team wanted to develop a detailed description and analysis of caregivers' everyday lives so as to contribute to a hitherto underresearched field of study in N e w Zealand and overseas. T h e effect of this decision was that the research came to focus more on the caregivers and their needs than it did on the needs of the older people for w h o m they were caring. By drawing attention to caregivers' tasks and needs, the

XI

research served to highlight their key position in the provision o f community care. Secondly, as with other Western countries, N e w Zealand has embraced policies o f community care and has m o v e d quickly away from the institutionalization o f dependent children, adults, and older people. T h e demands o f caring for a confused older person are considerable but the rhetoric associated with community care tends to emphasize the positive features o f such policies without examining the effects on caregivers nor the availability of community social and health services. There is now a substantial international literature dealing with the problems associated with community care and what has b e c o m e known as 'deinstitutionalization' or policies aimed at closing residential institutions. This expanding body o f knowledge draws attention to the advantages o f community care, but also disadvantages such as underfunding, lack o f community services, poor co-ordination o f existing services, lack o f follow-up, and complex bureaucratic mazes through which people must n o w find their way. From the start, the research team wanted to develop a concise, descriptive account o f the problems facing older people and their families when mental frailty b e c o m e s a reality o f daily living. T h e account is therefore a N e w Zealand study of the effect o f community care policies on s o m e family members caring for their confused, dependent relatives. It has been undertaken at a time when N e w Zealand is suffering from high unemployment and recession. In 1984, the fourth Labour G o v e r n ment introduced sweeping economic and state service restructuring that has had a significant impact on the provision o f N e w Zealand health and social services. E c o n o m i c and social policies adopted by Labour have been extended since 1990 under a National G o v e r n m e n t which imposed cuts on unemployment benefits, pensions, and other social welfare entitlements. Public health services are n o w being dramatically restructured through the introduction o f purchase o f service contracting with licensed providers. Few would deny that the social backdrop to this research has been characterized by unpredictability, turbulence, and uncertainty. T h e methodology adopted for the research sought to take account o f these events, particularly as they have been experienced by individual carers and their family members. In developing and employing the research methodology, Dr O p i e has spent considerable time examining the use of language and the way that oral communications or 'voices'

Xll

take on meaning and become represented in the form of 'texts'. As 'quotes' have been drawn from interview data to generate support for one conclusion or another, most social scientists have assumed that such actions are carried out according to basic principles of research objectivity. All too frequendy, however, insufficient attention has been paid to issues of power, multiple interpretations of 'meaning', and ways in which interviews can be shaped by the interviewer to achieve predetermined results. Feminist researchers have been particularly insistent that such features require explicit attention in any human subject research. This is a view shared by the Project team in the development of this research. What follows is Anne Opie's account of an investigation into some of the routine experiences of caring for a confused elderly person at home, hour after hour, day after day, over the course of several months or years. While this is a N e w Zealand study, we believe it will be of interest to those concerned with caring tasks and services for older adults elsewhere in the world. The study offers support for a gendered analysis of caring roles and challenges many underlying assumptions about community care. Entry into the world of some carers living at home with their confused elderly spouses or family members highlighted stresses and strains that are rarely encountered by the most strident advocates of community care. It will be seen that community care is all too frequendy subsidized by overworked and unsupported carers — mostly women — who become increasingly isolated, lonely, and despairing. Forced out of the labour market and away from social support networks into ever decreasing circles of caring routines at home, a large proportion of carers become institutionalized themselves. They become trapped in their own homes by policies that allow economy to masquerade as benevolence and neglect as tolerance. It is our hope that the voices which echo through this research will be heard in the continuing debate about community care policies and practice. W e hope the message, 'There's Nobody There', will become a voice of challenge to all concerned with developing social and public policies for an ageing population. Professor Leon Fulcher Victoria University Wellington, New Zealand June 1992

1 Introduction:

Siting the

Study

Wife: Day care centres have been set up and I think possibly that one could go on for a longer period, you know. It is preferable that they do stay in their own home. Well, let's face it, it is preferable that anyone stay in their own home, and I think, um, all the support groups and all that keep you hanging in there, b u t . . . this peeing all over the place is — you know — not nice, and you say, 'Why me, why me?' . . . half of me says, 'Right, put them into a rest home environment or some environment and get out'. Anne Opie: And the other half? Wife: Go through what I did. AO: But how can you reconcile those two? Wife: Well, you can't, can you? One contradicts the other completely. (Wife: husband with Alzheimer's type dementia) The Significance of the

Study

A qualitative account of the everyday lives of informal or family caregivers of confused older people extends far beyond a report of private experiences with little social or political relevance. This research is sited within a significant debate focused on whether and to what extent the provision of support and assistance with dependency should be pursued collectively or individually. It is concerned with the impact and implications of community care policies on families caring for dependent members and, because caring for dependents is predominantly carried out by women, the debate is closely linked to assumptions about gender and about the way that certain types of socially oppressive roles and relationships are perpetuated. Social policy assumptions about the roles and responsibilities of family members caring for dependent relatives have a major impact on family life. They simultaneously inform and are informed by demographic changes and changing cultural, social, and political expectations. A study of caregivers of dependent older people needs to address the consequences for individual carers of assumptions embedded in community care policies and to discuss the gendered, economic, and political environment in which that everyday caring is performed. This then permits a focus concurrently on microsocial practices within the 1

2

There's Nobody There

individual family in order to illuminate the nuances, contradictions, conflict, pain, and love embedded in caring, and on the siting of these practices and experiences within the social, economic, and political contexts surrounding and interacting with families caring for dependent members. Each field constitutes and is constituted by the other so that researching the everyday becomes 'a method for exploring the macropolitical forces in the micropolitical moments of their everyday execution' (Diamond, 1988: 40). My intention in describing the processes and effect of caring for older confused relatives at home on some caregivers in New Zealand at the beginning of the 1990s is to contribute to the small amount of New Zealand research on older people. By highlighting distinctive features of caregivers' daily lives where, by 'reflecting] on the subjective realitfies] of those people who are the targets of policy decisions' (Finch, 1986: 167), I wished to contribute to the shaping of policies which affect the caregiving process in order to ensure their closer fit with the realities of peoples' lives — a process which involves making more visible those who are substantially socially invisible, and whose importance is, ironically, intensified by the current direction of government welfare and health policies. The invisibility of the activity of caregiving has been largely constituted by ageism and sexism as well as by the practical demands of caring on caregivers. When the individual impact of caring and its wider social consequences are not understood by the community, then that lack of understanding contributes to an erosion of caregivers' social networks. Furthermore, professional and organizational practices intended to help those carrying the day-to-day burden of community care policies leave many existing on the periphery of the health system either because of the inadequacy of services or because those services are not properly responsive to their needs. Focusing on two vulnerable groups of older people — one made vulnerable because of the nature of their illness, the other (the older spouses) vulnerable because the stress and labour of their caring work — could easily relocate the older person within a medical perspective. Within this perspective, as Peggy Koopman-Boyden (1988) has pointed out, older people are represented as needy and as experiencing, in contrast with other groups within the population, a disproportionate amount of ill health and, consequently, as absorbing an undue degree of resources. The medicalization model, however, implies a passive, linear relationship between older people and service providers and obscures the

Introduction

3

former's substantia] social contribution as caregivers (Kendig, 1985; Koopman-Boyden, 1981; Qureshi and Walker, 1986; Wenger, 1990). It also obscures the extent of their economic contribution as caregivers. Furthermore, defining older people only as 'recipient' represents them as passive a n d / o r overly demanding service consumers and suppresses the extent of caregivers' active rejection of social services in preference for the individual care they are able to offer. This study on the effects of community care policies on some caregivers caring at h o m e for their confused relatives was undertaken at a time of major economic restructuring and historically high unemployment — two interrelated events which have proved to be extremely socially divisive and unsettling. T h e fourth Labour Government was elected in 1984. As part of its focus on N e w Right policies of economic growth rather than economic security, it began a process of reappraisal of N e w Zealand's welfare state, which had been inaugurated after the 1930s Depression. T h e National Government, elected in 1990, has continued to implement Labour's economic policies more intensively. T h e political, economic, and social climate in N e w Zealand during the period of the research has been one of considerable change, during which the implications of community care policies have emerged more sharply. As Nicola Armstrong (1990: 224) has argued: W e stand poised on the brink of transition from the welfare state to the enterprise state. In this transition, the model of the state positively intervening in the economy and providing welfare services is being replaced by a model which views the state as 'artificially' protecting the nation from the international market place and encouraging welfare dependency. This transition, as she has pointed out, has very real consequences for women w h o are, of all sectors of the population, most dependent on welfare services, both as providers, where they comprise 68 per cent of all employees in education, health, and welfare services, and as recipients. T h e changing political climate has had considerable impact on caregivers. As with other Western countries N e w Zealand has throughout the 1980s actively pursued a policy of deinstitutionalization, highlighting the often rhetorical advantages of community care. Historically, however, community care has been poorly funded in relation to other services, so making available to those in need only a

There's Nobody Then

4

fragmented, ill-coordinated service that was generally regarded as the poor

relation

o f the

health

services

(Jack,

1987;

Mental

Health

Committee, 1986; Mental Health Services Planning C o m m i t t e e to the Wellington Hospital Board, 1988; N e w Zealand Board o f Health, 1987, 1987b). Between

1984—90,

the

Labour

Government

introduced

major

changes to the N e w Zealand health services. A major component o f this reorganization was the abolition

o f the hospital boards and

their

replacement in 1988 by fourteen Area Health Boards. Because

of

escalating health costs and a rising deficit, Area Health Boards were required to operate within significantly diminished budgets. This led to styles o f management which stressed budgetary constraint, allocative efficiency, and accountability. In the personal social services, staff who left tended not to be replaced and, in the area o f community health, some services previously administered by the state were contracted out to private and community agencies. Pilot community care schemes were also established, such as the 'Sixties Plus' programme in Auckland, where local community organizations contracted to supply services with a userpays component for older and partially dependent people. However, this service does not accept referrals from very dependent people. A slighdy different programme, the Horowhenua H o m e Care Pilot Scheme, was also set up. T h e Department o f Social Welfare made available money that would otherwise have been used for a rest home subsidy to buy in services for caregivers in order to sustain caring in the community. T h e creation o f the Area Health Boards was also heralded as a means o f achieving a more integrated and empowering health system. As part o f the restructuring, elected District Health Boards were made responsible for establishing 'regional priorities by researching needs and holding discussions and negotiations at the local community level.' T h e intention was to facilitate a shift o f emphasis away from the health services' traditional hospital-oriented structure in order to develop new structures which would allow older people and other marginal groups 'active representation at decision-making level[s]' (New Zealand Board

of

Health, 1988: 8). It was not clear h o w effectively these groups were operating over the time they were in operation. N o r was it clear h o w much they encouraged active participation by 'marginal groups', or whether their creation contributed significandy towards funding

of

previously unmet needs, including community services for older people, or whether they did give 'individuals greater control over the structures

Introduction

5

about them which most impact on their well-being' (New Zealand Board of Health, 1988: 6) as was promised. However, in the Area Health Board in which this research took place, local community health groups were critical of the Board's processes of consultation and selection of members for these community groups (see also Martin, 1989). During the Labour Government's period in office the emphasis on budget constraint and service rationalization (often a euphemism for service reduction) contributed to rumours among caregivers about the continued availability of services and the imposition of more intensive user-pays systems. Anxiety that charges would be introduced for intermittent care programmes was particularly high especially among older caregivers and those living on restricted incomes. Within the Area Health Board in which the participants in the study lived, many believed that the closure of some geriatric hospitals and a reduction of intermittent care programmes had put the remaining resources under very considerable pressure. Certainly, a number of the participants in the research spoke of their problems in using their twenty-eight days respite care entitlement because of the increased difficulty in finding rest homes that would accept category three (i.e., the very dependent) people for respite care. Caregivers also reported that the hospitals, which had traditionally provided intermittent care programmes for families caring for very dependent relatives, had lost a very substantial number of trained staff and that standards of care had deteriorated noticeably, a concern which was shared by many nurses (Keene, 1989a, b). T h e overall effect of these changes was to create a climate of anxiety, uncertainty, and fear among caregivers. The National Government was elected in September 1990. Support systems to families with dependents were almost immediately cut substantially (Economic and Social Initiative, December 1990). In July 1991 the Minister for Health announced yet further major changes to the health system to be effected over the next eighteen months. Major aspects of these reforms were: the determination of core health services, through a complex mode of public consultation; 1 the abolition of the recently established Area Health Boards and their replacement by four Regional Health Authorities; the separation of funding and service 1. There appears to be increasing public scepticism over the consultation process with government. Certainly, some community groups suspect that the requests for the latest rounds of submissions are a public relations exercise and that the important decisions are made with little heed to the public input.

6

There's Nobody There

provision on the grounds that separation of funder from provider will result in more accountable, responsive, and cost-effective services; the transformation of the major hospitals into Crown Health Enterprises to be run along more business-like lines;2 the opportunity for small local hospitals to be run by the community as community trusts; the introduction of user part-charges; and the establishment of a new relationship between private and public health sectors which is intended to end the current 'top-up' and 'gap' private insurance systems and establish 'clear lines of responsibility for managing people's total health needs' (Upton, 1991: 62). Unsurprisingly, these proposals have given rise to considerable public debate as to their efficacy and their ability to generate the projected cost-savings and transfer of resources to primary health services. A considerable range of anomalies over exemptions from user charges have also been identified. There is also concern about whether the charges will result in decisions against service use. For example, at the time of writing, people over sixty-five are exempted from out-patient and in-patient charges, but will have to meet these charges after September 1992 unless exempt because of low income. Groups such as the Alzheimer's and Related Disorders Society (referred to hereafter as ADARDS) have voiced concerns that the fee for service will result in some cases in a further reduction in services to their clientele. Assessments are an interesting case in point. Without having had an assessment of their relative's levels of disability, caregivers are ineligible for publicly provided support services. Many people who are confused do not easily accept that they have anything wrong with them and, while they could be persuaded to attend an appointment for which they were not charged, they may well be unwilling to pay for a service which they do not feel they need. The Gendered

Semantics

of Community

Care

Over the last decade the focus of gerontological research, especially in the United Kingdom, has shifted from concern about the extent to 2. It is always fascinating h o w the word 'business-like' is intended to convey rationality, efficiency, and productivity. Yet, since the 1987 stockmarket crash, a not insubstantial number of large N e w Zealand businesses have crashed, in some wellpublicized instances wiping out the investments of many N e w Zealanders. This, of course, suggests an alternative interpretation of'business-like' which would highlight risk, irrationality, poor decision-making, low efficiency, and a high level of unethical, and at times dishonest, behaviour.

7

Introduction

which families accept responsibility for dependent older people to the gendered consequences o f accepting that responsibility. It has been widely asserted that c o m m u n i t y care, or care for dependent people at h o m e , is preferable for those being cared for as well as those doing the caring, since it encourages families to assume responsibility for their dependent

members

and

permits

the

giving

o f quality,

flexible,

personalized care in a familiar environment. In addressing the semantics o f caring and o f c o m m u n i t y care policies, feminist research has focused on the political, practical, and ideological implications o f c o m m u n i t y care. In unpacking for further inspection the ideological implications o f words such as 'family' and 'care', feminist writers and researchers have developed a detailed analysis o f the gendered politics o f c o m m u n i t y care, highlighting its problematic and potentially exploitative nature. W h i l e the shifts in the meaning o f c o m m u n i t y care in N e w Zealand have not been so precisely traced as those in the U n i t e d Kingdom the same shifts have occurred, especially over the last six years, making the issues highlighted in the British research relevant to N e w Zealand. M u c h o f the impetus for the development o f c o m m u n i t y care services in England developed in the 1960s from a sociological critique

of

institutions (for example, Goffman, 1 9 6 1 ) , and research into the large and geographically isolated institutions focused public attention on the appalling and isolated conditions in which many disabled people existed (Morris, 1969). In its first phase, c o m m u n i t y care became a means by which

large institutions were gradually

geographically

(and

hopefully,

socially)

replaced by smaller,

more

integrated

local

homes

in

communities. In a m o r e radical shift during the 1970s the definition o f c o m m u n i t y care in Britain was extended to include not only care in, but care by the community (Henderson, 1986). Henderson has described this transition as destructive o f the notion o f 'rights' to welfare because o f its concentration on individual, rather than community, responsibilities: Initially, this response was based upon an ideology o f prevention, particularly applicable in the field o f health where the promotion o f the concept of individual responsibility for one's state o f health was linked strongly with the predominant medical model. This model assumed causality and solution by an individual rather than in terms o f socio-economic determinants o f health and disease. In social care generally, the preventive ideology promoted a concept o f individual behaviour which directed attention away from structural determinism to individual causality; it emphasized personal responsibility and,

8

There's Nobody There further, implied the individual had the power and autonomy to take and carry out decisions which affected her/his life-style. In emphasizing individual responsibility, the preventive ideology legitimized and enabled an economic response in the 1970s in the form o f reductions in social expenditure, for it followed that if individuals could do more, the state could do less. (Henderson, 1986: 128)

This shift o f focus assumes, first, the existence o f a Western caring community, a concept which Janet Finch and Dulcie Groves (1980: 4 9 5 ) , quoting Pearson, have referred to as a 'sociological pastoral'. Secondly, the adoption by a number o f Western governments, including New

Zealand's, o f N e w R i g h t economic policies has led to the

increasing redefinition o f caring as an individual responsibility and to the denial o f a wider, collective social responsibility. In their work for the N e w Zealand Royal Commission on Social Policy, Marshall and Peters have suggested that when a discourse emphasizes social well-being as a 'product o f individual choice and contract' (Marshall and Peters, 1988: 680) 'community' is frequently defined without attention to the needs o f the most vulnerable and least powerful. This occurs because those constructing the definition are 'people whose very understanding o f themselves and the world is such that the "true way to care" for the individual is to act in accordance with the free market individualistic beliefs' (Marshall and Peters, 1988: 669). Part o f the rationale informing the free market philosophy is that privatization o f care (and retrenchment o f public services) increases the health consumer's power to choose. Mary Simms, however, has argued that a result o f this dual process o f defining care as private and cutting back on public services on the grounds that private services give the consumer greater choice, has been to effectively restrict 'choice' for the aged and their families within the public sector (Simms, 1989: 175) in economies where many individual families are unable to meet the cost o f private care. Thirdly, the belief in a caring community assumes the availability o f caregivers and obscures the labour inherent in caregiving. Research has repeatedly shown that the caregiving among Western families is not equally distributed among all family members. Although a report in the Family

Policy

Bulletin

(Spring,

1990)

noted that the

1985

British

Household Survey showed that far more men were providing care than had been thought (a finding substantiated by a recent survey among older people in N e w Zealand (Colmar Brunton Research, 1990)), 3 caregiving is still predominantly women's work (Brody, 1981; Croft, 1986; Dalley,

Introduction

9

1988; Finch and Groves, 1980, 1983; Henwood and Wicks, 1984; Johnson and Catelano, 1983; Parker, 1985; Qureshi and Walker, 1986; Rossiter and Wicks, 1982; Walker, 1986). Furthermore, the women who provide care are almost always the primary caregivers, typically receiving marginal support from other family members, and are often poorly served by community services where, certainly in the United Kingdom, access is partially determined by gender and family composition (Arber et al., 1988; Evandrou et al., 1986). Women are thus central to the structure and operation o f the health and welfare system (Dale and Foster, 1986; Pascall, 1986; Williams, 1989) yet as feminists have noted, this positioning within caregiving is highly problematic because the ideological reading o f caring as 'natural' or essential to women has contributed very substantially to women's social, economic, and political sub-ordination. Assumptions about women's availability as caregivers, and the expectation that they should perform such roles, run counter to equal opportunity policies. Looking after a severely disabled or dependent person is likely to result for many in their withdrawal from paid work, their loss o f pension rights, and their long-term financial disadvantage (Finch and Groves, 1980). A N e w Zealand woman looking after her mother commented: All my expenses come out of my savings. The Government says you've got to be saving for your old age, and yet a lot of my savings are going on maintaining this situation. I am very concerned about my own old age; it's a very frightening prospect. (MacDonald, 1990: 11) The pervasive association o f women as caregivers and as caring draws on a series o f historically powerful, symbolic images o f women, each representing universal moments o f tenderness, concern, love, and 3. In this survey focusing on the quality o f life o f older New Zealanders, the one thousand respondents aged sixty and over living in metropolitan area (n = 6 5 8 ) , main urban centres ( n = 2 9 9 ) , and secondary or minor centres (n = 4 3 ) were asked to comment o f the hours per week spent looking after spouses, partners or friends. O n e third ( n = 3 0 9 ) stated they were involved in such caregiving. This figure was comprised o f 135 men and 174 women. Respondents were asked to indicate the amount o f time they spent caregiving each week, calculating this across different times ranging from less than two hours a week to 'constantly/all the time'. Interestingly, significantly more women (n = 5 6 ) nominated themselves as caring constantly/all the time than did men (n=31), although in relation to other amounts o f time, there was a more balanced gendered distribution (unpublished table 39, Colmar Brunton Research, 1990).

10

There's Nobody There

gentleness. There is a direct link with television commercials o f a young, smiling mother, carefully wrapping her laughing toddler in a towel newly washed in fabric softener, or applying her whole (immaculately turned out) being to the choice o f the best packaged soup for her young, muddy, but engaging heroes on their return home from the sports field, to the frequent representations o f families in which a child is placed within its mother's encircling arms, to the Lady with the Lamp (where the appalling squalor and mismanagement o f the Crimea War is excluded), and to the Virgin Mary herself holding the Christ Child in her arms. Not only do these images articulate a simplistic representation o f care, but their carefully restricted symbolic reference to women and a particular type of emotionality and orientation o f concern defines 'woman's' essentialist nature and constrains her within that definition. This makes women's resistance to caregiving problematic. T o resist care can be too easily represented as tantamount to denying love and tenderness. One of the major tasks o f feminist research and comment has been to challenge these conventional and restrictive representations o f caregiving. Feminists have sought to expand the discourses o f care by describing the hitherto suppressed and thus publicly unacknowledged tasks of caregiving and by highlighting the complexity o f emotion and work it generates. In particular they have articulated the polarities embedded in the concept of'caring', defining caregiving as 'love' and as 'labour' (Finch and Groves, 1983); and have addressed the often contradictory and negative emotions carers may feel for those they are looking after (Marsden and Abrams, 1986; Qureshi, 1986). T h e dominant association o f caregiving with positive affect obscures the reality o f the often conflictual nature o f family relations. It assumes the persistence of essentially positive relationships in the face o f intensive physical and emotional demands imposed by such work, and fails to question whether the act o f caregiving may destroy what had previously been a positive relationship (Croft, 1986; Johnson and Catalano, 1983; Qureshi and Walker, 1986). 'Caring' also tends to suppress the complexity o f the work it generates. As has been noted (Graham, 1983; Parker, 1981; Waeness, 1987) caring involves tending, i.e., the provision o f physical services. In addition to feeling and expressing concern it also involves taking charge. Above all it involves work, stress, and is very labour-intensive. Caring is not so much

Introduction

11

an expression of women's natural feelings of compassion and connectedness as the psychological analyses would suggest, but is an expression of w o m e n ' s position within a particular kind of society. . . . Caring . . . describes more than the universal feelings w o m e n have: it describes the specific kind of labour they perform in our society. (Graham, 1983: 25) T h e suppression of these elements reflects the widespread e c o n o m i c , social, and political devaluation of w o m e n ' s w o r k , and failure to account for its e c o n o m i c value (Waring, 1988). T h e belief that c o m m u n i t y care is significantly less expensive than institutional care is n o w increasingly regarded as problematic for a n u m b e r of reasons. For instance, there are the difficulties of estimating, let alone fully costing, opportunity costs, and estimates of cost savings achieved by c o m m u n i t y care programmes are also d e p e n d e n t on the level of disability of t h e d e p e n d e n t person (Green, 1987). Terri Green's research into the full resource costs of institutional and c o m m u n i t y care in N e w Zealand indicated that maintaining a less d e p e n d e n t person in residential care generates m o r e savings than maintaining a very d e p e n d e n t person. T h e f o r m e r require less personal care and are therefore less d e m a n d i n g on institutional resources; the latter require far m o r e assistance and care, thus increasing costs. At the same time, she n o t e d that the overall cost of care at h o m e is cheaper, but that this benefit has to be balanced by recognizing the very high opportunity costs it places on carers. Because the cost of care is related to levels of d e p e n d e n c y , G r e e n and R a y n o r (no date: 11) have argued that increasing c o m m u n i t y care provision to ensure that very d e p e n d e n t older people had at least a 'basic package' of weekly services such as o n e halfh o u r visit f r o m a nurse, t w o hours help f r o m a h o m e aid, o n e laundry visit, three meals on wheels, t w o hours of sitter assistance, and o n e day of day care w o u l d increase current expenditure considerably but still be considerably cheaper than the costs of institutionalization. T h e i r proviso, h o w e v e r , is that with increasing levels of dependency, the costs to the informal caregiver increase and that these should not be ignored. T h e crucial e l e m e n t of the argument is that it has to be accepted that 'genuine c o m m u n i t y care requires a genuine increase in resources' ( R e n s h a w et al., 1988: 152). Part of the need for increased f u n d i n g is that better-designed c o m m u n i t y care services should aim to ensure that services are m o r e easily accessed and that those w h o are entitled to receive assistance receive it, thus avoiding problems of l o w t a k e - u p of

12

There's Nobody There

benefits. Community care has tended to be defined as cheaper than institutional care in part because costings did not take sufficient account of low take-up rates and partly because of the political disinclination to acknowledge the full resource costs of caregiving to informal caregivers. In this respect the considerable savings claimed by the Horowhenua Home Care Pilot Scheme offer only a partial account of the full cost of caregiving. The estimate of the cost-savings generated by the scheme are based on a calculation of the difference between what was paid out for the extra home care assistance and the costs had the person been admitted to continuing or residential care (Willis, 1990). The financial and social or opportunity costs borne by the individual carer, such as the physical and emotional strain of caring and the restricted lifestyle of many caregivers, were not computed. 4 Yet, as the Social Development Council (1979) noted, these costs may often be very considerable and include expenditure incurred because of extra heating, home modifications, medical and related costs (such as those associated with incontinence, involving the purchase of protective clothing and bedding, the cost of frequent use of a washing machine, the cost of extra clothing, and the cost of replacing clothing, furniture, and floor coverings damaged by incontinence), transport costs, the loss of employment, or a reduction in hours worked, or the inability to take up a higher-paid job. Other costs not expressly identified by the Social Development Council relevant to those caring for confused people include damage to household equipment (burnt-out ketdes and pans being a particular case in point) and legal fees incurred by carers assuming power of attorney. Green has also calculated costs to family caregivers of caring for the dependent relatives. In her study of the full resource costs of caring for seventy-two seriously disabled older people in the community in 1983— 84, Green (1986) estimated that over 80 per cent of the cost of caring was provided by informal carers, stating in another paper that 'Informal care was the largest single input to care in the community and was strongly correlated to patient dependency. Expenditure by the state on community services was only weakly correlated with patient dependency' 4. Interestingly, too, in this scheme eligibility for access to subsidized community services was set at approximately $5000 in cash assets. However, in other parts of the same Board, where similar schemes but using different types of funding have been inaugurated, subsidization is not available if the client has over approximately $2000 in cash assets.

Introduction

13

(Green and Raynor, no date: 2); and that ' T h e resource costs of informal care are on average 2.8 times that of agency-provided care'. Recent Australian research has confirmed the high cost of community care to the individual caregiver (Rosenmann, 1991; Tilse et al., 1991). English researchers Melanie Hen wood and Malcom Wicks (1984) have also estimated the cost of the provision of informal care. O n the assumption that a dependent person would be cared for by the state if an informal carer was unavailable, their calculations show that informal care saved the state between £ 3 . 7 and 5.3 billion sterling per annum. These calculations were based on the assumption that one million carers work between twenty-four to thirty-five hours per week, at a minimum rate of ¿ 2 sterling per hour. However, they state that this figure should be regarded tentatively because insufficient is known about the nature of the task, the hours spent in caring, and the numbers of carers. T w o yean later, the Audit Commission (1986) estimated that informal care saves the state _£3000 sterling per annum for each individual who would otherwise be the full responsibility of the state. Unless the full resource costs are included in estimates of the full cost of community care, then these informal costs are easily lost sight of as government policies place increasing emphasis on the desirability of informal care. In N e w Zealand the emphasis of the last two governments on economic growth appears to mean that the resource costs associated with the care of a dependent older person are met by family members w h o are now also increasingly subsidizing any assistance they receive from the state. Demographic

Factors

Community care policies assume the availability of family members, and women in particular, to care for and maintain dependent family members outside of institutional care. 5 Yet families are themselves undergoing substantial demographic changes which are likely to affect their ability to carry out this role without additional increased strain. N e w Zealand's population is ageing and increases in irreversible dementias accompany any increases in an ageing population. It is estimated that one in eight over the age of sixty-five are likely to have a dementia, and that possibility increases to one in four for those over eighty years (Campbell 5. For an account of effects of community care policies on N e w Zealand women caring for intellectually disabled children see Mumford (1989).

14

There's Nobody There

et al., 1983). Koopman-Boyden (1988) reported that between 19812011, those aged between seventy-five and eighty-four years are projected to increase by 64 per cent; and by 170 per cent for those aged over eighty. N o t only is there a significant increase in the numbers of older people 'requiring care* but, importandy, older spouses form a numerically significant group of carers (Jack, 1987). Older spouses often have to assume caregiving responsibilities when they are in reduced financial circumstances and have failing health, thus bringing fewer personal resources to the demanding tasks of caregiving. Moreover, the low birthrate in previous decades means that there will be fewer adult children available to care for their presendy middle-aged parents as they become in need of care. Other demographic changes, which are commonly assumed to affect the number and availability of carers, are the increased divorce rate and the participation of w o m e n in the paid workforce. As H e n w o o d and Wicks (1984) have pointed out, community care policies have assumed the persistence of certain patterns of family relations, especially the notion of a 'stable' nuclear family where a wife caring for a dependent elderly parent or parent-in-law is supported economically and emotionally by her husband. T h e N e w Zealand 1986 Census figures suggested the rate of marriage dissolution in N e w Zealand had peaked, following the introduction of the Family Proceedings Act 1980. T h e number of dissolutions dropped by nearly 30 per cent between 1982—86 (Davey and Mills, 1989). However, these figures did not include separating defacto families and more recent figures n o w indicate that one family in four is a solo-parent family, compared with one family in six in 1986 (Dominion, 2 May 1992). Such changes are certainly likely to disrupt traditional patterns of caregiving, where daughters-in-law provided care for their husband's parents. A further major change for N e w Zealand families between 1976 and 1986 has been the dramatic increase in the number of w o m e n entering the paid workforce on a full- or part-time basis. W o m e n in the paid workforce increased from 32 per cent in 1976 to 42 per cent in 1986. At the same time those w h o registered themselves in the 1986 Census as full-time homemakers dropped substantially. In 1976, 49 per cent of women aged between twenty and twenty-nine years and 59 per cent of those aged between thirty and thirty-nine years registered themselves as full-time homemakers. In 1986, 26 per cent of w o m e n aged between twenty and twenty-nine years registered as full-time homemakers as did

Introduction

15

only 29 per cent of w o m e n in the thirty to thirty-nine year age group (Davey and Mills, 1989: 141). These figures do give evidence of a clear trend towards women's movement away from full-time domestic responsibilities, but at the same time they do not indicate the disproportionately high number of women in part-time work (Clark, 1986). This suggests that although change is occurring, it may not be as strong as a superficial reading of the figures quoted above would indicate. Although it is possible to speculate that women's participation in the paid workforce will reduce their availability to care (an availability perhaps affected by their frustration with the lack of recognition of the value of their unpaid work (Davey and Mills, 1989)), it is not altogether clear that this is taking place. T h e still small amount of N e w Zealand research into gender and domestic arrangements points to the substantial repetition of patterns found in other Western countries, i.e., women continue to retain major responsibility for domestic work. T h e qualification for N e w Zealand, however, is that although w o m e n typically retain more responsibility for domestic chores than men, under certain circumstances (strong alternative work and value commitments held by men), this pattern is less likely to occur (Habgood, 1992). Gendered division of housework, of course, does not relate directly to provision of care of a dependent older person, but it does point to deeply embedded patterns of socialization and internalization of roles which are not easily modified. It can probably be fairly assumed that the pressures on w o m e n to continue to provide care, irrespective of their participation in the paid workforce, are unlikely to change rapidly (Lewis and Meredith, 1988; Twigg, 1989). Rather than ceasing to provide care because of the associated stress, the more likely course of action for many w o m e n is their management not just of the double burden of paid and unpaid work (Brody, 1981; Lang and Brody, 1985; Novitz, 1987) but a triple burden of domestic responsibilities, paid work, and the care of a dependent older person. T o compound this burden many daughters w h o are caring for dependent parents are likely to be faced with the 'choice' (if that is the right word) of giving up work or finding a place for their relative in institutional care. 6 Recent N e w Zealand governments have actively sought to restrain health costs and to implement ways of 6. Colleen Johnson's and Donald Catalano's (1983) research indicated that adult children tended to relinquish care earlier than spouses because of the stress associated with the formers' additional family and work commitments.

16

There's Nobody

There

redistributing these costs through the society. In this context the cost o f institutional care has became a matter o f concern. Bonita et al. (1989: 6) wrote: The cost of funding long stay hospital and community care in New Zealand is considerable. In 1985 it represented 13% of the total funding of health care in New Zealand. In that year, long stay hospital care in the public sector cost $96 million; a similar amount was spent on private hospital care, although almost 30% of this was funded from patients' private contributions. In contrast, the cost of care in Old Peoples' Homes in New Zealand was estimated at $130 million with the contribution from the residents being closer to 60%. This study o f long-term care in Auckland, New Zealand's largest city, found that the available beds were more than twice that recommended by national guidelines; and that there was a surprisingly high number o f residents in old peoples' homes who were categorized as independent in terms o f activities o f daily living. While the authors o f the study noted that Auckland was a special case, the study itself drew attention to the number o f people in some types o f residential care who conceivably did not need to be there. There are now more strict regulations governing admission to rest home care. Clearly, it is not in the government's interest (nor often in the interests o f the individuals concerned) to have people entering rest home care unnecessarily, so using up their resources in advance o f real need. At the same time there appears to be an expectation that people with increasingly high levels o f dependency will be maintained in the community. T h e current policy is that people who enter rest homes should have been assessed to establish their dependency level, and that people who are not assessed as being in need o f care should be discouraged from entering such care.7 Individuals, however, still have a choice as to whether they enter a rest home. In all cases, though, they are only eligible for subsidization once their cash assets have been exhausted. Those entering rest home care are required to pay for their care until they have reduced their cash assets to either $11,300 for a couple and $5665 for a single person. 8 Once their cash assets have reached the cut-off 7. A recent informal survey o f dependency levels in private and religious institutions caring for older people in one Area Health Board indicated that a surprising number o f residents had not been assessed prior to their admission (personal communication). 8. The amount left to couples or individuals is enough to pay for their funerals.

Introduction

17

point, they have to be assessed as in need of rest home care in order to become entided to a subsidy, the costs of which are later clawed back on the setding of any estate. If they are assessed as not dependent at the point where their funds run out, then they may be required to leave. Those who have been assessed as in need of hospital care become eligible for subsidized care under the Geriatric Hospital Special Assistance Scheme (GHSAS). This scheme is funded by the Department of Health and administered by Area Health Boards. It is income tested only and does not take cash assets into account. Whether one's relative is assessed as in need of rest home or hospital care can therefore make a considerable difference to a family's and/or spouse's financial future. I would argue, then, that the economic policies of the new right as they concern community care policies leave 'the family' sited within four paradoxes: First, Henderson has argued that a tension exists within the New Right's definition of the nuclear family as private and as requiring 'protection of its present form of gender responsibilities' (Henderson, 1986: 136). She argues that these policies enable governments to adopt non-interventionist family policies whose thrust is to reinforce the notion of women's responsibility within particular domains while ignoring the reality that these policies perpetuate women's economic and social subordination. Such policies also allow governments to minimize their own dependency on women while relying on women to augment governments' limited caring activities. And at the same time governments justify their dependency on women by assuming their ability to access supportive social networks existing beyond the nuclear family. Ironically this assumption, that women can access supportive social networks, then undermines any concept of the family as 'private' and highlights the critical need for a collective social responsibility for caring, a collective responsibility which is ideologically unacceptable to those espousing New Right principles. Second, Government is promoting community care on the informal level, so assuming a collective social responsibility, while at the same time actively undermining on the macro level policies implementing that concept. Individuals and local communities are expected to retain a social conscience, but the actual structure or model of society which government policies are defining as desirable emphasizes individuation and the loss of a collective responsibility. Third, although an objective of community care policies is to

18

There's Nobody There

strengthen family ties and obligations, the continuing imbalance in the amount of unsupported and very demanding work performed by informal carers in relation to that assumed by the state is often destructive of family ties (Watson and Mean, 1989) so that these policies undermine the very institution which allegedly they are intended to support. Fourth, carers' needs for supportive services result in their being positioned as overly demanding in a political economy where consumption is not just highly valued but imperative to the survival of the system (Bauman, 1989). In the welfare field, however, being a consumer is negatively valued and attributes of greediness and improvidence are easily associated with those who have to rely on state assistance.

The Relationship

between Formal and Informal Care Providers

Despite the burdens imposed by caring, especially on those caring for people with dementia or with major communication problems, family members, for a variety of complex reasons, continue to want to look after their elderly relatives at home and avoid their institutionalization (Finch, 1989; Koopman-Boyden, 1988; Qureshi and Walker, 1986). My analysis of community care policies does not deny or question the significance of that individual intention. However, articulating some of the political and social issues embedded in such policies is necessary in order to highlight how the individual carer, because of a complex interweaving of personal desire to care and social obligation to assume care, is vulnerable to exploitation by community care policies as they are currendy defined. In order to redress the gendered imbalance of caring and distribute its negative consequences more equitably, many researchers (for example Aronson, 1992; Croft, 1986; Finch, 1989; Finch and Groves, 1980; Walker, 1986) have suggested affirmative action to encourage men to participate in the actual tasks of caring. Walker also articulated the concept of 'partnership' as a means by which a less exploitative relationship between state and carer could be developed. This relationship would also affirm the necessary interdependence and reciprocity (in which power sharing is implied) between formal and informal carers. Ideally a 'partnership' would respond not only to the medical condition of the confused person but also to the carers' assessment of their need for practical assistance and support. It would result in the development of a

Introduction

19

more flexible, responsive service that would help to break down the polarity between institutional and community care. It would also allow for a much more flexible inter-weaving o f different modes o f care and reaffirm a collective responsibility towards disability. The concept o f partnership, however, is not a simple one. Carers straddle several boundaries, being simultaneously consumer, mediator o f services on behalf o f another, and professional (given their stock o f everyday knowledge and accumulated experience) and, although central to the caring enterprise, positioned 'off centre', their presence both taken for granted and generating concern (Twigg, 1989: 54). These multiple locations place carers in a highly ambivalent position in relation to service provision and result in the identification o f a number o f contradictory positions within social policy and practice. Janet Twigg has analysed three social policy models which elaborate the different ways in which caregivers are positioned within the welfare system. She suggests that within these models, carers may be regarded respectively as 'resources', 'co-workers', and 'co-clients', that each model is problematic, each has different implications for service provision, and, within each, there are unresolvable tensions. Questions about whether the needs o f the carer or the person being cared for are to be accorded priority are not the only concerns about service distribution arising from the different models. Twigg asserts that broader questions are also implicit in the models. For instance, at what point does a state-provided system o f care weaken an informal helping structure by providing help? What are the social and political implications when a welfare system is widely perceived as assisting those who are not coping, while leaving those who are seen to be coping continuing to do so unaided? When does political belief about the superiority and desirability o f home care result in the shoring up o f an intolerable situation? Does one focus on those who are likely to give up care more quickly if not given support, and what are the implications o f this for gender equity? It may well be that, as the level o f disability o f the person for whom they are caring increases, caregivers progress from being 'resources', to 'co-workers' and then 'co-clients', while each redefinition o f role and status places them in an increasingly complex relationship within the health and social services. Twigg argues that the purpose o f her analysis is not to resolve the contradictions embedded in the three models by which social care agencies conceptualize their relationship with informal carers, but to

20

There's Nobody There

make these contradictions more apparent and thus to focus attention on the critical question of the interaction between individual and state. When is intervention appropriate? Who defines the carer's position? How responsive are the health and welfare systems to carers' assessments of their needs? Community care, or more precisely, care at home, is the mode of care desired both by the majority of caregivers and those for whom they are caring. It is also a mode of care where much of the day-to-day work continues to be the responsibility of adult daughters or older spouses, many of whom are also likely to be women. It is a mode of care and work which depends on a loving relationship, yet produces strains which may well destroy or disrupt that relationship. The objective of community care policies should be to respond to that individual desire to care while remaining alert to the actual and potential systemic abuses and the impact of caring on individual caregivers. Adopting such an objective has implications for resource distribution; it also highlights the need for those developing policy in this area to actively recognize the personal cost of caring. This book moves across a range of interrelated areas. Chapter two, The ' R E A C H ' Study: Method and Texts, falls into two parts. The first part provides basic sociological data about the research design and the participants and outlines the practical methodological issues. The second part of the chapter describes dimensions of post-modernist theory, with its focus on issues of textuality, which are central to a post-modern interpretation and to the interpretative strategies which inform the reader of the transcribed interviews. As part of this theoretical and methodological account, particular qualities of some of the participants' texts are discussed in detail. The final part of the chapter addresses issues of empowerment in qualitative, feminist research. Chapter three, Becoming a Caregiver, discusses some of the issues identified in the literature on factors influencing caregivers in their decisions to become carers. It moves into an account of the powerful associations between gender and knowledge, describing and analysing the participants' accounts of their 'decisions' to move into a caring role and their experiences of the initial phases of caring. In discussing the gendered dimensions of this experience it addresses the diversity of response both within gender and between genders. Chapter four, 'The Common Round, the Daily Task . . .': Caring in

Introduction

21

Everyday Life, looks at critical issues in caregivers' everyday lives. It begins with a discussion of carers' health and how this affected their caregiving role. The next section provides a detailed discussion of caring work, highlighting both the physical and affective dimensions. The fourth section of the chapter is an analysis of carers' accounts of a typical day. The last section moves the analysis of the response to caregiving and stress beyond the confines of sex and kinship in which it is typically located. What is proposed instead is that the field of caring can be defined in terms of a matrix, encompassing a range of different and unstable positionings—'commitment', 'obligation', 'dissociation', and 'repudiation'—each of which is characterized by different dimensions and implications, and each of which can potentially be occupied by any caregiver, irrespective of their gender or kin relationship to the person being cared for. At the same time the chapter highlights the instability of location within this matrix since location is affected by a range of factors including the quality of the past and present relationships with the confused person, the health of both caregiver and their dependent relative, the intensity of the demands of caring, and the extent to which the carer has accepted the role of caregiving. Chapter five, Caring for the Caregivers: Informal Support Networks, opens with a brief discussion of some issues in social network theory and their relevance to community care policies. The remainder of the chapter describes and analyses the type of help available from others. It focuses first on family members, noting that the help husbands in this study offered their wives was critical to the latters' continuing to care, and then discusses the help received from friends and neighbours. Typically, carers reported that caring resulted in a significandy reduced social network leaving them feeling intensely isolated. Caregivers' everyday experiences of caregiving were affected by the extent and type of contact they had with formal service providers. Chapter six, Caring for the Caregivers: The Provision of Formal Support Services, is a report on aspects of these experiences. It looks initially at some of the broad objectives of formal service provision and comments on service utilization by caregivers. The remainder of the chapter presents an analysis of caregivers' evaluation of their experiences with social and medical services. Overall, these caregivers appeared to be on the margins of the health and social services systems. Chapter seven provides a summary of the findings of the study. It falls into two sections. The first section identifies six major principles relating

22

There's Nobody There

to c o m m u n i t y care policies and discusses their implications in some detail. T h e second section examines the practical implications of these principles. If a more equal partnership is to develop b e t w e e n informal and formal caregivers then services need to be conceptualized in terms of three interlocking dimensions, 'Exploration', ' R e v i e w ' , and 'Protection'. Finally, some implications of the proposed notion of partnership are discussed. T w o last comments. T h e first is that this book is about the experiences of some N e w Zealanders, all of w h o m lived within the boundaries of one Area Health Board. Their experiences with formal service providers cannot therefore be immediately generalized as being valid for all N e w Zealand communities. N e w Zealand is a small country, but there is still a considerable diversity of access to health care d e p e n d i n g on w h e r e o n e lives and o n the priorities of the particular Health Board. N o r w o u l d the experiences of these caregivers necessarily be the same today, given the changes to the health system since the fieldwork was undertaken. At the same time, however, as my current research into the provision of some formal care services to caregivers and their confused older relatives has indicated, it would be foolhardy to assume that problems similar to the ones o u d i n e d here in accessing services would not have been, and may well still be, experienced in other parts of the country. T h e second c o m m e n t is that the book draws its title, There's Nobody There, f r o m the words of one participant. Although the range of emotional positionings and responses to caring make it impossible to define a 'typical' carer, this statement caught the experiences of many of those w h o took part in the research. It reflected their experiences in t w o ways. First, it reported what was a typical experience — a lack of others (family, friends, and formal service providers) to share and assist with the b u r d e n of caregiving. Secondly, the full sentence, ' T h e r e ' s n o b o d y there, n o one's h o m e ' , reflects the powerful and distressing experience of the psychological loss of a relative which accompanies dementias, and w h i c h adds immeasurably to the stress of caring. T h e o u t w a r d person is the same; the k n o w n person has gone. T h e experiences reported here, then, present a challenge to those w o r k i n g with caregivers and their relatives and those concerned with policy issues. T h e challenge is to develop policies and practices that can respond sensitively to the complexities of caregiving w h i c h these participants have highlighted.

2 The 'REACH'

Study: Method and Texts

I found when I started running into problems with Mother I didn't understand what the matter was. I couldn't, 1 didn't know where to look for help. I went through a number of years of hell — really hell — trying to help my mother and nobody realizing what the problem was. And I could not . . . I didn't even think to go to social workers. . . . I honestly did not know where to turn and if anybody else has this sort of problem I would be very happy if I could save them through opening other peoples' eyes. Because everybody I tried to explain the situation to thought it was a script from a television soap opera or something. . . . I began to doubt my reasonableness. I thought 1 was exaggerating everything. My whole family was turned inside out and it must happen to others. (Daughter: mother with Alzheimer's type dementia) Methodological

Issues

In early 1989 I approached over twenty voluntary social service agencies who worked with older people and their families in a North Island N e w Zealand city for referrals of participants to the study. I contacted these agencies rather than the Area Health Board's district hospitals for two reasons. First, as part of constructing a narrative of carers' daily lives, I wanted to ask the caregivers about their contact with the Area Health Board services and I thought that referrals from the Board's staff might have biased perceptions of access to services. As it turned out, most of the participants in the study had some contact with the Board's personal social services but this in itself did not guarantee their access to the potential range of services available to them. Secondly, the research group did not want to restrict referrals only to those w h o had been assessed as demented but wanted instead to focus on those w h o were considered confused since it was believed that this would provide a wider range of participants and would ensure the inclusion in the study of those where there was no definite medical definition of their mental condition. In the hope of generating a range of different caring relationships which would illuminate a variety of situational and structural patterns of involvement, I asked the community 23

24

There's Nobody There

agencies to refer clients: 1. who were still living in the community; 2. who were considered confused; 3. whose confusion had begun in or after late middle age; 4. where there was an identified local carer; and 5. where the carer was either typical or atypical of carers with whom each agency worked. As noted in chapter one, caregiving is sited within gender politics. A study properly concerned with analysing gender within the field of caring requires that maleness and femaleness are read as socially ordered and culturally determined categories, whose assumed transparency requires scrutiny.1 A study of women carers merely reinforces women's visibility in this role and in so doing contributes to the very structure that feminist research seeks to critique, a point further developed in chapters three and four. My request for referrals from agencies or relevant organizations of those they considered confused produced a focus on three different types of confusion. 1. Most of the agencies defined confusion in terms of a dementia, particularly an Alzheimer's type dementia. 2 2. Obviously the neurological damage caused by a stroke can contribute to a dementia. However, the community organization who defined those who had had severe strokes as 'confused' emphasized more the dimension of confusion that arises as a consequence of the development of communication difficulties following a stroke. The participants referred by this organization were in general all mobile (some more than others) but had very limited ability to communicate.

1. The notion of 'transparency' is critical to a post-modernist position. It challenges referentiality as dominant function of language. It refers to the fact that language is a system with its own rules for determinining meaning. Words refer to concepts and not things. The possibilities for meaning in a text are determined more by the language system than they are by the situation in which that text is produced. 2. Alzheimer's Disease can only be properly diagnosed after death in a post-mortem or alternatively by a brain biopsy. These biopsies are dangerous and invasive and are not carried out in N e w Zealand. Caregivers who said their relatives had Alzheimer's therefore may well have been told that their relatives have an Alzheimer's type dementia. A number of the participants in this study believed that their relatives hid Alzheimer's. However, some were uncertain about the diagnosis, saying that it had not been conclusive, but giving the impression that over time it would become so and that Alzheimer's would be confirmed.

The REACH Study

25

3. Another agency defined three of its clients as confused. In each case and for a variety of reasons, no formal assessment had been carried out but their relatives felt that they had a degree of m e m o r y loss and required help with activities of daily living. For example, o n e son described his mother's gradual m e m o r y loss, and a daughter w h o was a non-resident carer had b e c o m e very worried about her parents' increasingly strange behaviour. H o w e v e r , she was unable to get them to accept any help and was afraid that the volatile situation which existed b e t w e e n her parents might turn into violence. Although in some respects this situation was atypical of other participants' current situations, what was typical was the daughter's recognition in the early stages of her parents' confusion that s o m e t h i n g was w r o n g and her difficulties in mobilizing help. This case also illustrated powerfully the feelings of impotence, concern, and fear experienced by those caring for confused people w h o refuse to allow their relatives to take action on their behalf. Finally, o n e person with a physically degenerative disease was also referred to the study. She was extremely dependent and gradually b e c o m i n g d e m e n t e d . Although there was some variation in relation to the degree of dependency and incapacity of the older people, most of those referred to the study required considerable help with activities of daily living. In all instances, there was c o n t i n u i n g uncertainty about further loss of abilities. While an Alzheimer's type dementia progresses t h r o u g h a series of recognizable plateaux, the speed with w h i c h an individual may b e c o m e demented is unpredictable, as is the extent of deterioration. This makes it impossible to predict h o w quickly individuals will deteriorate and h o w disabled and dependent they will b e c o m e . In contrast, those referred to the study w h o had had strokes and were initially very disabled had regained some abilities over time before reaching a plateau. H o w e v e r , subsequent i m p r o v e m e n t b e y o n d this plateau was extremely slow, and the possibility remained (and in o n e case the reality was) of a further loss of functioning as a consequence of subsequent attacks. Approaching c o m m u n i t y agencies for referral of participants to the study provided evidence of the relative invisibility of confused older people and those w h o care for t h e m . In particular, it demonstrated the lack of c o m m u n i t y resources and agencies w o r k i n g w i t h this particularly vulnerable sub-group of older people. T h e majority of the c o m m u n i t y agencies w h o m I approached said they did n o t cater for this group, or did so only in small numbers because of lack of resources or because of their

26

There's Nobody There

specific orientation. S o m e agencies w h o did accept a small number o f confused clients had no one on their records at the time w h o m they could refer. Most

o f the

referrals

came

from

the

local

ADARDS

group,

Counterstroke (a voluntary organization working to support those who have had strokes and their families), and three day care centres which catered specifically for Alzheimer's type clients. A community social worker, a residential home, a religious organization, a colleague, and a nursing bureau referred one or two people each. A total o f thirty-two carers were referred to the study. T h r e e o f these decided against participation, two because they lacked the time to give to the interview (one o f these also expressed anxiety about h o w the confused person would react to the interview situation o r the knowledge that it was being held), and another one because she became anxious about the proposed taping o f the interviews. W h e n asked to define a typical caregiver, the referring agencies or individuals responded in terms o f the caregiver's gender and the kin relationship between the caregiver and the confused person. Staff at the agencies also raised the question o f the quality o f relationship between the caregiver and confused person and, sometimes, the degree o f stress the caregiver was experiencing, but these factors were secondary to the gender/kin categories. Nearly all agencies nominated daughters as the most typical carers. However, as a category o f caregiver, 'daughters' could be further differentiated to take account of: (1) whether or not their parent was co-resident; (2) whether they had dependent children at home; (3) whether they were married or had a partner; and (4) whether they were in the paid workforce. It was much more difficult to establish the extent to which a referral was 'typical' or 'atypical' across these four dimensions o f daughter-caregiver characteristics. T h e second most 'typical', and underresearched group o f carers were spouses (Kendig, 1986; Lewis and Meredith, 1988). In this group, wives were more likely to be caring for husbands. Primary caregiving sons were the least typical group o f family caregivers. O f the six sons referred, only four were primary caregivers. In the other two cases, the daughters-inlaw were the primary caregivers o f their husband's or partner's parent. In only two instances out o f the six were the parents co-resident with their sons. However, one son whose mother was co-resident had shared almost equal responsibility for her care with his partner although the partner had been more involved in the personal tasks o f caring. Because

The REACH

Study

27

of the imminent birth of their first child she had left paid employment and, by dint of being at home, had consequendy become more involved in her mother-in-law's daily care. 3 Finally, two neighbours were referred to the study. Both kept a supervisory eye over a confused older person. O n e decided not to take part. The other was interviewed together with two friends, w h o also saw themselves as 'keeping an eye out for the old lady'. Referral to the study developed into a process of refinement and differentiation. After having interviewed the first fifteen or so referrals and partially analysed their transcripts, I then requested further referrals which complemented or expanded certain modes of kinship caring patterns and which highlighted issues of quality of relationship between carer and dependent elder in order to more fully explore the dynamics of the caring relationship. The

Participants

T h e twenty-eight family carers and the three neighbours referred to the study were mostly drawn from an urban setting. However, participants living in a major semi-rural retirement area were also included, as one of the hospitals in the Area Health Board served this area. Family caregivers in the study included seven wives, six husbands, eight married or partnered daughters (including the daughter-in-law and the partner judged to be the primary carer), three single daughters, and four sons who were or had been primary caregivers. In five cases, the elder had been recently admitted to continuing care, and another was admitted between the two interviews held with her son and his wife (who had been minimally involved in her mother-in-law's care). Tables 2.1 and 2.2 provide details of the ages of the caregivers and their confused relatives. Caregivers came from a range of socio-economic groupings. Five husbands and two sons had been or were still self-employed in professional or managerial positions. Generally, the w o m e n had lower occupational status. O n e was a teacher and t w o had taught prior to their retirement. Another was a nurse. Others listed a range of occupations including office manager, draughtsperson, salesperson, typist, and 3. In the tables relating to the study both these cases are included under 'daughters', but where quotes have been used from the latter's text, they have been referred to as 'son sharing care with partner'.

28

There's Nobody There T a b l e 2 . 1 : Ages o f adult children and their dependent parents

Age 20-24 30-34 35-39 40-44 45—49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85-89 90-94 TOTAL

Single daughters

2

Daughters

Sons

Dependent parent(s) *

1 1 1 2 3

1

2 1 2

1 2 4 5 3 1 3

8

4

17

* Numbers include two caregivers looking after both parents.

T a b l e 2 . 2 : Ages o f informal carer spouses and their dependent spouse Age 2-24 25-29 30-34 35-39 40-44 45—49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85-90 TOTAL

Wives

Husbands

Dependent spouse

1 1 3 1

1 2 3

1 5 5 1 1

7

6

13

1

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accounts supervisor. T w o of the older wives had been (and still were) full-time homemakers but four had worked in the paid workforce until their retirement, one retiring early when she felt her husband could no longer manage on his own. O n e wife, w h o was considerably younger than her husband, had stopped her paid work to care for him. She was anticipating with considerable relief a speedy return to work because her husband's dementia had accelerated and his admission to continuing care was becoming inevitable. You know, I thought [whispering] — and aren't I naughty? — I thought last week when Saturday was so bad, I thought, 'MY GOD, I could be working after Christmas.' As well as caring for her husband, she and her sister shared the responsibility of caring (less intensively) for her mother w h o had had a stroke and lived nearby. In contrast to the wives, two husbands with very dependent wives were still working, albeit with increasing difficulty and only for a few hours per week, fitting their hours around their wives' attendance at day care. O n e husband had retired early to take care of his wife. T w o of the primary caregiving sons were divorced. O n e had never married and the other was married. O n e of the divorced sons had given up work to undertake the care of both his confused parents but believed he would find another professional position easily when his parents went into continuing care. By contrast, the w o m e n w h o had given up paid work because of their caring responsibilities, believed their prospects for reemployment were limited. O f the three single daughters, one was caring for her father, while the other two were caring for their mothers. O n e had lived with her parents all her life and had helped her elderly mother care for her father until his admission into continuing care and subsequent death. She had then reached retirement age and almost immediately found herself looking after her 'old, old' dependent mother w h o was becoming demented. T h e second single daughter, having nursed her mother until her death, was living with her father at the time of his stroke. She had been made redundant at work just prior to his stroke, and had been the 'obvious' family m e m b e r to become responsible for his full-time care. Before accepting the responsibility for her mother's care, the third single daughter had nursed her father through his terminal illness and had helped care for other dying relatives. She continued in the paid

30

There's Nobody There

workforce during the two to three years that her mother lived with her before her admission to continuing care. Unsurprisingly, all but one of the w o m e n in the study referred to an extensive history of caring roles, involving either the care of a parent, other relatives, or children. O n e married but childless woman had also looked after a widowed male relative for almost a decade, travelling three times a week across town on public transport to do so. She commented, slighdy ruefully, I looked after her husband for ten years doing his housework and . . . making meals and leaving others in the fridge in the nights I wasn't there, for ten years. And when the ten years was up and 1 thought, 'I don't think I can do this much longer' . . . and within a few months he upped and married again so I thought, 'Well, that was the easy way out [laughing]. I didn't have to be the wife there!' (Wife: husband with Alzheimer's type dementia) In vivid contrast to the women, most of the husbands and sons had had little involvement in caring activities or the practical tasks of running a household. O n e husband, however, who had been brought up from childhood to cook and clean (although his wife had done more of these tasks prior to his retirement), stated that possessing this basic knowledge was a considerable asset when he became responsible for his wife's care. I don't need help. My mother always maintained that boys should do as much as girls. She waited on her brothers. She said she wasn't going to have that again. (Husband: wife with Alzheimer's type dementia) Another had always done some of the cooking and one or two others referred to helping their wives with the care of their young children. O n e man, however, emphasized how his total lack of experience of caring and housework had contributed to the difficulties he had had in assuming a caregiving role, a role which was 'totally opposed' to the way he had previously lived his life. Most of the married daughters were managing a double dependency of parent and children. Six (including one daughter-in-law) had dependent children; another was about to have her first child. T h e ages of the dependent children ranged from six weeks to fifteen years. O n e woman, whose parents did not live with her, had three children under two-and-a-half years. T w o married daughters were in full-time paid employment. Only one daughter had given up part-time work to care

The REACH

Study

31

for her mother. She was very worried about how easily she would find employment once her mother went into continuing care because of the difficulty of keeping up with technological change when out of the paid workforce. Another daughter, though, had worked intermittendy in the part-time, paid workforce in a variety of relatively unskilled jobs while caring for her mother. This part-time, sporadic paid employment was important in helping her meet the legal costs associated with getting her mother deemed in need of care and protection under the Aged and Infirm Care and Protection Act. It also gave her a legitimate reason to leave her mother on her own for an hour or two each week. W h e n they assumed the care of their parents the other daughters were already fulltime homemakers with dependent children. Twenty-two of the confused older people, including those w h o had been admitted to continuing care prior to the fieldwork, had been, or were then, co-resident with the primary caregiver. The parents of two married daughters, a daughter-in-law, and three sons, were still living in their own homes at the time of my initial contact with them. Because their parents were living independently, these caregivers had some respite from the continual strain and tensions which arise from living with a confused person. But they were also subject to other stress factors. Four non-residential carers spoke of their anxiety lest anything happen to their parents in their absence. While the sons called in regularly to check on their mothers, the contact the daughters maintained was considerably more intensive, partly because they were more available during the day. O n e mother virtually lived in her daughter's house during the day, and when not there phoned her daughter constantly. Another daughter also had frequent, lengthy phone calls from her mother throughout the day, during which she often tried to reason with her mother to get the doctor, contact the district nurse, and so on. Her mother's rejection of these suggestions invariably left the daughter feeling furious, because the phone calls were time-consuming and repetitive, and reinforced her powerlessness to positively influence the situation. At the same time, she felt unable to leave the telephone unanswered when it rang in case her parents were ringing to advise her of an accident. In their construction of a 'caring biography' Jane Lewis and Barbara Meredith (1988: 14) described a caring sequence in order to account for the varying degrees of dependency and differences in the supervision or surveillance required of caregivers looking after a co-resident confused parent. They commented on the fluidity of the boundaries between each

32

There's Nobody There

stage of dependency. In practice it is often difficult to define the point where one stage merges into the next. However, progression through the caring sequence requires an increasingly intense focus on the caring task, resulting in the carer's inevitable exclusion from other activities, although the amount of supervision caregivers felt it was necessary to provide reflected their perceptions of the degree of dependency and did not always correspond to what a health professional had deemed as necessary. Although caregivers may have been told they could leave their confused relative on their own for several hours, many do not find it easy to accept this advice. Knowing technically that one's parent or spouse ought to be able to be left for three hours does not necessarily allay a carer's anxiety about the possibility of a fall or that their relative may become frightened or disoriented at finding themselves alone. The amount of supervision caregivers judged necessary was thus determined by their feelings of responsibility and assessment of what they felt safe with, and was not just based on a medical assessment of dependency levels. The caring stages which Lewis and Meredith defined as part of a caring sequence are 'semi-care', 'part-time full care', and 'full care'. 'Semi-care' accounts for the period when caregivers feel that their relatives should not be left on their own for any length of time despite what a doctor or other professional may have said about their ability to manage on their own. 'Part-time full care' describes the period when confused elders warrant full-time care but carers maintain other aspects of their lives, to some extent trusting to luck that all will be well when the elders are on their own. 'Full-time care' defines the stage when carers believe that their relatives cannot be left on their own for over one hour (Lewis and Meredith, 1988: 32-40). The majority of older people cared for by the carers participating in this study were deemed by the carers to be in need of either full care or semi-care as shown in table 2.3. As with the carers in Lewis and Meredith's study, participants in this research commented on the fact that theoretically their relative could have been left for longer periods than they had felt comfortable doing. Most did not absent themselves for substantial periods of time. For instance, two wives caring for husbands who had had severe strokes stated that they could have left their husbands all day, but immediately qualified their statements, one noting that she had almost never left her

The REACH

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33

husband for as long as that and the other making it clear that her husband objected if she went out for more than two or three hours. To keep the peace, she rarely went out on her own. Table 2.3: Amount of time carers said they left elder alone Time alone: hours 0-0.5

1-2

Single daughters Daughters Sons

3 2 0

0 1 0

Wives Husbands Total

3 4 12

0 0 1

2-3

3-4

8-9

0

0 0 1

0

2 0 0 1 3

1 0

0 1

1 0

2

10+

2

0 2 3 3 0 8

The four primary caregiving sons offered 'part-time full care'. Three did not live with their confused mothers, believing that they would have found a co-resident situation too restrictive and impossible to manage. Two maintained reguiar contact, one daily, the other several times a week. The other, who did not visit as regularly, said that he knew that his mother had needed much more supervision but he did not feel able to do more than he did. The son who had moved in to care for his parents left them on their own regularly for a number of hours a day. Although at the time of the interview it was safer to do this than it had been earlier when his father had been prone to wandering, this son had defined his regular breaks away from caring as necessary to his survival as a carer. A daughter who was also a 'part-time full carer' noted that until recendy she had refused to acknowledge how frail and confused her mother had become because of the implications, not only for herself but also for her family, and for her mother who would finally lose her independence by coming to live with her daughter. Having finally admitted the extent of her mother's fragility and dependence, she had recently moved her mother in to live with her and her husband and with hindsight felt that she should have acted sooner. Interviewing

I interviewed the carers in their homes, with the exception of one son (whose mother was in care) who chose to come to my office. Because of

34

There's Nobody There

the length o f time the w h o l e interview took, and to avoid their exhaustion, I met with most o f the participants twice. In three instances the spouses or partners o f the adult caregiving children also took part in the interview. In t w o o f these families w h e r e the w i f e or partner was currendy acting as the primary caregiver to a parent-in-law, the son did most o f the talking, giving the impression that they had decided it was more appropriate for immediate kin (i.e., the son) to discuss the situation than it was for non-kin. H o w e v e r , one couple appeared to be very tense over h o w they w o u l d manage the anticipated stress o f a n e w baby and caring for a demented parent. T h e son's partner expressed clearly her frustration and annoyance

over his refusal to think through

their

changing priorities and, in contrast to his more laid back, 'Let's see h o w things w o r k out' attitude, wanted him to set limits on the time they would continue to care for his mother. Although irritated at his refusal to do this, she also insisted that the decision had to be his — it was his mother for w h o m they w e r e caring and not hers. O n e husband w h o was in the house w h e n

I interviewed his wife declined to take part,

announcing that he was not involved in his father-in-law's care. Each interview lasted between one-and-a-half to t w o hours, thus giving a total of three to four hours' interview time with each carer. Each participant contributed a vast amount o f detailed and very personal, sometimes

very

harrowing,

information,

generally

delivered

with

considerable intensity. T h e interviews seemed in many instances to open a floodgate — something on w h i c h carers themselves commented. I conceived o f the interview process as one w h e r e I entered into a dialogue with each participant, recognizing and affirming the caregivers as the experts on their subject. Although some w e r e worried that what they had said was o f limited value or that they had rambled rather than coming directly to a point, most seemed to feel comfortable in the interview situation. As one w o m a n said during her second interview: N o w it didn't worry me your coming today. Don't ask me w h y because I don't know . . . but I normally would no more have put up the ironing board and done some ironing if I knew that someone was coming this morning than flown to the moon, and when I was ironing, I thought, ' N o w , you wouldn't do this if it — normally when someone is coming.' (Wife: husband with Alzheimer's type dementia) H o w e v e r , there w e r e some points o f discomfort, both for m e , as interviewer, and for the caregiver.

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35

Husband: Yes, I think my wife was very curious to k n o w what we'd been talking about and I think — I can't help but feel that she feels a bit left out of it, that, you k n o w , that she's — this is going on and she's not hearing what we're talking about. But it would be very difficult to be completely and brutally frank, I think, if she was here. AO: I must say I felt something of the same hesitation, about feeling that I didn't want her to feel excluded, but also feeling that there are things that it's maybe difficult to say. Husband: I have pointed out to her to try and assuage her feelings, or something, that, you k n o w , 'It's not really about you, dear, it's about the problems of people giving care for disabled people. It's about their problems more than the disabled person's problems'. And I think she's — I think she was happy to have that as a reason for her not to take part. (Husband: wife with stroke) T h e interviewing had a dual d i m e n s i o n , allowing the collection of data w i t h i n a f r a m e w o r k of attending to personal relations w h e r e the process of attending to these relationships enabled people to speak freely, so enriching the recorded material. Validity of data in qualitative research is closely linked with its quality a n d therefore to t h e m a n n e r of its collection. Qualitative research is less p r e o c c u p i e d with the notion of replicability and, especially in p o s t - m o d e r n i s t readings, the n o t i o n of absolute truth. Instead, a p o s t - m o d e r n i s t reading acknowledges the speaker's location as critical to the shaping of the account and focuses particularly on that account's textuality and internal construction (Atkinson, 1989; Geertz, 1988). Participants by n o means presented only positive versions of themselves o r their actions, elaborating instead the c o m p l e x emotional sites f r o m w h i c h caring is c o n d u c t e d . S o m e spoke at length of their disgust and dislike of aspects of their task and of their frustration, sense of loss, and pain. M a n y spoke of their anger and consequent feelings o f guilt. N o r did they attempt t o disguise negative feelings and focus only o n positive ones in describing their relationship with their confused spouse or parent. T h e accounts gave evidence of a c o m m o n a l i t y of experience, yet that c o m m o n a l i t y was experienced and reported in ways w h i c h emphasized the diversity of responses to the obligation and desire to care. W h a t of m y position as interviewer? H o w did these very intense accounts affect me? Despite having had over t w e n t y years' social w o r k and counselling experience, and therefore experience in distancing the emotional impact of others' histories, the notes I m a d e at the time record m y constant feeling of stress a n d distress. I was deeply shocked at the

36

There's Nobody There

impact of a dementia or severe stroke both on the individual concerned and also on the person doing the caring. I was appalled at the lack of support and also the difficulties for formal providers in providing support, given the factors which constrain caregivers in their use of such assistance. I found many of the accounts profoundly moving. Although it is easy to sound trite in so saying, I was filled with admiration at the courage and determination of the participants. I went, too, through quite intense periods of fear about my own old age and what the effect of my becoming demented might be on my family; and this is a fear which still assails me from time to time, partly because I have continued to work in the area of dementia. I developed a chronic, painful cough early on in the interviewing which only went away after that aspect of the research was completed. Although I did explore positive aspects of caring with each caregiver, I found myself wondering if my distress contributed to an over-degree of emphasis on pain and on loss but concluded that the interviews did reflect a range of different emotions, and did not just focus on negativities. I taped all the interviews and these were later fully transcribed. I returned copies of their transcriptions to each participant to allow them to retain control over what could be used in the research. I used an interview guide but did not seek to follow a particular sequence, instead often beginning the interview by referring back to some point which the carer had made on my arrival. The interviews covered a number of areas: the onset of the illness; the processes by which the participants became caregivers; their feelings about the person for whom they were caring and about being a caregiver; aspects of their everyday life and its effect on them; the type and quality of contact with family, friends, and neighbours along with the medical and social services and their evaluation of these contacts. I also collected relevant personal details from each participant. I asked most carers whether I could spend some time with them when the confused person was present, in order to obtain firsthand knowledge of what it meant to look after a confused person.4 Eleven agreed to this request. These periods of observation varied in length from one to six hours (the six hours included the time spent interviewing, during which

4. Marshall (1989) suggested that it should be obligatory for those defining health policy affecting caregivers of confused older people to spend at least eight hours with a dementing person.

The REACH

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37

the son's m o t h e r wandered in and out of the r o o m , and would from t i m e - t o - t i m e j o i n in the conversation as best she could). In other instances too, the confused person j o i n e d in the interview, operating mosdy with highly truncated vocabularies or noises and non-verbal communicative patterns. Conversations with the confused people were very limited, and apt to end in non sequiturs. In one instance, a dependent husband was present during the first interview, but I arranged the second interview at a time w h e n he would be at day care since it had b e c o m e increasingly obvious that his wife felt very constrained in what she could say in his presence. I interviewed a n u m b e r of the caregivers w h e n the confused person was not present, since they were concerned lest m y presence upset their relatives. O t h e r confused relatives were in continuing care or were in hospital w h e n the interviews took place, or the situation had deteriorated rapidly since the first interview and the caregiver cancelled the meeting and arranged a further time w h e n their relative, w h o I was to have met, would be absent. I f o u n d it very difficult to ask caregivers' permission to share their daily experiences. This was partly out of a sense of voyeurism. It was, too, partly because the confused older people were rarely able to give their consent to the contract because of their levels of dementia, while people w h o had had strokes were either unable to communicate or only able to do so with difficulty. H o w e v e r , the opportunity to at least share part of the day with the caregivers and their relatives proved invaluable in expanding my appreciation of what caregiving for a confused person means in practice, so further contextualizing the issues of which the caregivers had spoken. I carried out the first set of interviews between J u n e and N o v e m b e r 1989 and c o n d u c t e d a follow-up interview by telephone in April and May 1990 with twenty-six of the participants and with only one of the caregiving neighbours w h o spoke on behalf of her friends. I did not recontact t w o participants. O n e was seriously ill in hospital and the other (a son) had m o v e d , leaving no forwarding address. I have quoted only extremely briefly f r o m these t w o transcripts. T h e follow-up had three objectives. These were to: 1. ask about developments since the first contact, thus placing the research in a longitudinal perspective; 2. discuss carers' transcripts and note areas to which no reference should be made; 3. request formal permission to lodge tapes in the Alexander Turnbull

38

There's Nobody There

Library Oral History Archive in Wellington5 (very few placed restrictions on any of the material and twenty-one returned forms giving their consent to the placement of the tapes in the Archive). The concerns of the study are wide-ranging, but at the same time it has its limitations. The research focused on older people cared for by family members, so excluding from consideration those living without family support. Because of New Zealand's current cultural and political situation, I did not attempt to research a range of ethnically diverse carers. This study therefore focuses only on pakeha caregivers (that is, of European origin) and does not attempt to explore the impact of caring for confused older people on whanau.6 With the exception of the neighbours, all the caregivers were looking after a close kin. However, it was not possible to research every permutation of family caregiving situations or relationships. Few daughters-in-law who were primary carers were included. While carers commented on the impact of caring on their marital and family relationships and on the impact on children whose parent or resident grandparent was confused, I did not explore in any detail the effect on the wider family of the dynamics of caring, nor discuss the role of the voluntary and church agencies which in New Zealand have traditionally provided a substantial proportion of welfare services to older people. Finally, the research is based on the experiences of caregivers living in or near to a major New Zealand city. Research into the experiences of rural caregivers is very much needed. Although I have sought to provide an interpretation of everyday experiences, some major issues have not been addressed since these were regarded as research topics in their own right and beyond the scope of this study. Legal issues in particular require urgent attention as does further research into the financial implications of caring in light of social and economic changes. Equally, although caring for an older confused person may often involve the decision to stop caring, I have not dealt with this aspect in any depth, partly because research on this topic is already being undertaken within the Department of Sociology and Social Work at Victoria University of Wellington (Schofield, 1992).

5. Caring Alone: Experiences of Those Caring for the Confused Elderly (Opie, 1991) is an edition of seven of the transcripts from these interviews. 6. ' W h a n a u ' is the w o r d for the basic family unit within Maori society. It does not refer to a nuclear family structure, but to members of the extended family.

The REACH

The AnalytiiProcess:

Sorting,

Study

Ordering,

39

Interrogating

Although I di some of the analysis of the transcriptions during the interviewing process, I completed most of the analysis once the interviewing vas over. Part of the analysis involved following standard procedures in ¡ualitative research — the generation of a very large range of initial analyic categories whose purpose is to help begin to move the data from theJescriptive to the conceptual. The questions on which I focused my rading of the transcripts at this point were 'What is this about?', 'Whc does this describe?', ' H o w can I conceptualize this experience?', o entering into a process of textual interrogation. In addition to thse questions, I had already determined on a number of broad areas ofinalysis as a consequence of contact with the international literature on oregiving, so that the seventeen major analytic categories which I then simulated addressed issues highlighted by the participants themselves as veil as ones which were prominent in the literature. The completed inexing system covered such areas as: onset of the illness; carers' reasonsfor accepting their role; contact with medical and social services; caregvers' evaluation of services; carers' perceptions of relative's needs; the effct of caring; gender issues; informal community support: family, friend: neighbours; the emotional demands of caring; and the everyday. I ¡so had a category 'textuality'. This focused on the identification 'f specific textual features and included sub-categorizations such as parada, contradiction, structure of text, and dominant tone. During theanalysis of each transcript, I wrote a brief account of its qualitative dinensions which I kept under this heading. The importance of the identifiation of textual features became increasingly apparent as I moved into amore detailed analysis before and during the writing up process. T h e r was often considerable similarity in terms of content in statements mde by different participants about particular experiences. Yet the way ii which these experiences were discussed indicated that the subjective imact of these common experiences differed significantly, heightening tb importance of taking account of tone, emotionality, and the overall cotext in which the caregivers spoke of their experiences. Within eao of these broad categories I generated, as implied above, a range of subhadings as I worked through each transcript. For instance, 'effect of carig on carer' had subheadings such as: positive aspects of caring; loss f free time; maintenance of free time; loss of paid employment; maintenance of paid employment; loss of interests;

40

There's Nobody There

maintenance of interests; carers' health; sexuality; development of coping strategies; difficulties in setting limits on role; setting limits; abusive situations; carers' changed expectations of life; experience of stress. As I worked through each transcript, I pencilled in what seemed to be the appropriate categorizations from the indexing system I had developed (and to which I continued to add). The size of each marked segment of text varied considerably — some were pages long, others a short sentence or a few words, and nearly all had multiple references. Since I did not have access to qualitative computer packages for a Mac — MacNUDIST (Richards and Richards, 1990) had not yet come on the market — I sorted the data into its relevant categorizations using a Mac and the word processing programme, Microsoft Word 4.7 The Outlining package of this programme was particularly valuable since it allowed me to move easily (even if time-consumingly) through the range of headings and subheadings to copy and paste text by expanding and collapsing different levels of computer text. I did this computer sorting process after I had finished reading through each transcript, and indexing each text. The fact of rereading and reconsidering the text as 1 sorted it also meant that I generated further possible destinations for many segments of text. I labelled each segment using the name of the participant, the number of the interview, and line numbers, and wrote in the other categorizations in which I had also placed that particular piece. I worked systematically through all the wives' transcripts, then the husbands', and so on, on the grounds that this would help me expand my familiarity with the way participants with the same kin relationship described their experiences, and enhance my appreciation of points of difference and similarity within each 'kin-type' of transcript as well as the differences and similarities between, say, the experiences of wives and sons. I also wrote in (using italics to ensure they were later readily visible) detailed notes of points or issues that occurred to me at the time and references to the literature, and also began to make notes of further analytic possibilities. Helping a person dress or helping with toileting was not just about ability to perform activities of daily life, but also referred to issues of autonomy and the loss of autonomy, structuring, intrusion, the achievement of a balance between competing needs, and the containment of frustration and emotional positioning — 7. See Fielding and Lee (1991) for a discussion of the computer packages that are now available and the theoretical, conceptual, and practical issues they generate. See also Richards and Richards (1987) for an account of the value of such packages.

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and these reconceptualizations formed my development of the caring matrix which moves the analysis of the response to caring past the gender/kin framework in which it has been located (see chapter four). Since the process of refining the initial analytic framework on the computer would have been too time-consuming without a proper package, I worked through all the newly created indexed segments of text from the original texts in relation to the particular chapter I was writing, making extensive notes on the computer about the implications of statements, linkages between different areas, conceptual and theoretical possibilities, and possible generalizations across the texts. I used this time to develop and think through the data sets and to relate them to earlier sets of notes I had made in the process of the fieldwork, and to the literature. This process of re-indexing was not as elegant or as flexible a process as a computer programme would have permitted, but it was a vast improvement on a manual cut and paste process. I also marked potential quotations that I thought would properly illustrate the analytic or descriptive points I was wanting to make. 8 I then used the detailed notes, which I had used to move the analysis further beyond my first more descriptive indexing phases, to begin to write up each chapter. As I have written it, the account of this process appears to have followed a predominantly linear structure. In reality, the process of analysis, refinement of the analysis, and writing up were not the discrete processes that my attempt to describe their different steps implies. Obviously, there were periods when more of one activity was under way than another. W h a t I want to stress, though, was their interrelatedness — to do one was to be involved to some extent at least in the other, each informing and being informed by the other. For example, beginning to more consciously think about the texts analytically involved writing, itself a generative process. Indexing the same segment of text to more than one category meant, too, that as I read through the differently indexed files, often in relation to writing different chapters, these textual segments recurred in different contexts. This re-experiencing of such differently contextualized text helped me to rethink the implications and revisit/modify/expand earlier analysis. Finally, a process of analysis is a simultaneous experience of suppression and expansion — suppression because conceptualization is grounded in data which, by presenting it in terms of that concept, itself 8. See Opie (1992) for a discussion about criteria used for selection of quotations from transcripts.

42

There's Nobody There

then becomes unavailable; expansion, because exploring the ways in which data can be conceptualized and further theorized moves the argument beyond previously reached points. T h e challenge for me, as writer, was to explore the theoretical and conceptual possibilities o f the data, while at the same time remaining grounded in the texts themselves. Although the quotations that I have presented in the course o f the book represent only a tiny fraction o f the rich data which informed the study, their incorporation (as I discuss in more detail later in this chapter) reflects my desire to hold onto an immediate vividness, while also making available some o f the material out o f which the analysis grew.

The Analytic Process: Analysis of Caregivers' Accounts as Texts T h e interviews generated lengthy, complex, and densely textured narratives. M y post-modernist analysis o f these narratives has focused on their status as texts, as cultural productions open to multiple readings and interpretations. This account is one interpretation o f caregivers' lives, developed out o f my intensive contact with the participants and with their texts, an interpretation further contextualized by the wider social and political processes oudined earlier. As part o f this textual reading I have adopted a Foucaultian position with regard to knowledge. Joan Scott (1988: 2) has written, '[kjnowledge refers not only to ideas but to institutions and structures, everyday practices as well as specialized rituals, all o f which constitute social relationships. Knowledge is a way o f ordering the world; . . . it is inseparable from social organization'. Knowledge is therefore deeply implicated in power relations and in social order (Foucault, 1980). Reading the narratives as 'text' focuses on the processes o f textual production, the fluid nature o f narrative (Patai, 1988; Polkinghorne, 1988; Strathern, 1988) and on the location o f the speaker, whose particular cultural and political positioning limits the breadth o f generalization. As texts, these accounts cannot be read as transparent. Nor can they be understood as complete because a recounted experience is always open to re-evaluation over time. There is (theoretically) always something more that could be said or said differendy. Adopting a postmodernist position requires acknowledgement that all texts, oral or written (including this one), are partial constructions o f reality, their power and 'truth value' inextricably linked to gender and social and ethnic status. These texts represent a number of different positions within the

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activity or field of caring. Each position is structured by a range of factors including gender, age, socio-economic status, health of both parties, geography, previous experience of caring, the quality and density of support networks, extent of other responsibilities, and the quality of the past and present relationship with the person being cared for. Each narrative is simultaneously a highly individualized text representing the particular concerns of each caregiver, and these concerns are themselves informed by the social and historical circumstances in which that caregiver lives. Reading the transcripts of an oral text 'textually' directs attention to the distinctive features of the way that text is spoken. 9 Such a reading pays close attention to the speaker's use of language and goes beyond a concern with content. Particularly significant textual features are tone of voice, variations in intensity, ambiguity, apparent contradictions, hesitations or tentative formulations of thought (the last indicated in the quotations by ellipses, each point representing approximately a second, rather than their usual use). These elements, ignored in modernist sociology, are important. They question or deconstruct the assumption that the speaker's words can be taken to represent an integrated, consistent position. These texts give access to a wide range of emotions. Many carers spoke of love and concern for the confused person. Yet these emotions were, in varying intensity, intermingled with resentment, doubt, guilt, feelings of loss and pain, bewilderment, resignation, depression, worry, anxiety, and sometimes fear about an uncertain future. What would happen when they were no longer able to provide care? H o w much more confused or demented would their relatives become? Would they be able to cope with that? H o w easily would they find a continuing care bed? O n e wife said, 'I've never felt that I can't find a solution to a problem . . . I can't solve this one, and I'm up against a brick wall there'. T h e tone of most of the texts was sombre, without many flashes of humour. O n e text was particularly nihilistic, its tone possibly heightened by the speaker's perception of the imminence of his own death and of the way in which his previously expansive and well-travelled life had suddenly contracted into an exhausting and destructive experience of caring for a demented wife: 'That's h o w you finish'.

9. For a discussion of presenting oral texts in order to catch oral features visually, thus seeking to create 'audible sentences' see Tedlock (1983: 7).

44

There's Nobody

There

T h e r e w e r e m a n y points o f c o n t r a d i c t i o n w h e r e speakers' e m p h a s e s at o n e p o i n t in t h e i r texts w e r e u n d e r m i n e d b y subsequent s t a t e m e n t s so that t h e initial strength o f an assertion w a s t h r o w n i n t o d o u b t a n d t h e positioning o f the s p e a k e r / c a r e r rendered uncertain, a positioning w h i c h graphically r e p r e s e n t e d t h e precariousness o f t h e c a r e g i v i n g itself. T h e r e

were

moments

when

situation

speakers e x p r e s s e d a l m o s t

simul-

taneously a b e l i e f that t h e y c o u l d n o t c o n t i n u e a n d an a w a r e n e s s that t h e y w o u l d . In a s e c t i o n in w h i c h t h e s t r u c t u r e captures h e r sense o f collapse and r e c o v e r y , o n e w i f e said:

Well, I a m fortunate in that I've got a . . . I cry at anything . . . w h i c h I d o n ' t think I ever used to. It all gets o n top o f m e and, ohh, and then if they are cross and they d o n ' t want t o get dressed o r s o m e t h i n g , ' O h dear! I can't go on'. A n d then, eventually y o u get t h e m dressed and you g o o n , y o u ' r e working, ' O h yes. I can g o o n . . . after all . . . . It's m y husband', and you kind of get over it. . . . A n d y o u might have t w o days and

that

might

be

fine.

(Wife:

husband

with

Alzheimer's

type

dementia)

L a t e r she r e t u r n e d t o t h e s a m e t h e m e :

I say there's times w h e n I think, ' O h , I can't g o o n ' . . . but . . . . there have been times up until recendy, and only a c o u p l e o f days ago t o o . that u m

o h h h , w e had had a few w o r d s o v e r s o m e t h i n g and

about ten minutes later Steve'll c o m e out and he'll say, ' I ' m sorry about that'. A n d then y o u think, ' O h ' , y o u k n o w , ' P o o r soul. H e doesn't k n o w ' , so — I m e a n , y o u forget about what's g o n e o n before and y o u think, ' O h , y o u k n o w , I can g o o n . ' S o I don't really k n o w . Y o u just g o o n . . . and . . . y o u think y o u c a n ' t and all o f a sudden half an h o u r later y o u can.

T h e a m b i g u i t y a n d p a r a d o x i c a l n a t u r e o f t h e c a r i n g task w a s c o n s t a n t l y r e i n f o r c e d t h r o u g h sudden m o m e n t s o f slippage. F o r instance, in t h e q u o t a t i o n b e l o w , this wife's t e x t initially s e e m s t o b e affirming t h e i r relationship regardless o f the difficulties, b u t t h e n it c h a n g e s d i r e c t i o n so that h e r husband's 'loveliness' b e c o m e s q u e s t i o n a b l e . S u c h

moments

d e m o n s t r a t e the k n i f e - e d g e o f m a n y carers' lives, especially t h o s e c a r i n g f o r t h o s e w i t h A l z h e i m e r ' s t y p e d e m e n t i a w h e r e a small, r o u t i n e e v e n t can p r o d u c e a catastrophic reaction.

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He's . . . he's lovely just the same. I mean, there is never a night goes by — I sit on the couch there with him and never a night goes by that he doesn't put his arm around me and . . . we just sit and watch TV or something like that. N o . . . . it's just that I can't understand what he says, and he doesn't seem to know what I say, but then, it just needs one little thing to . . . to start things off. . . 'Oh, well . . . I'm going to bed now', or something, and then um . . . . Oh, I start to take his socks off or something, but he doesn't want his socks off and . . . [laughing] and then away you go! (Wife: husband with Alzheimer's type dementia) There were many points of tension surrounding the carer/dependent relationship. A daughter, w h o had power of attorney over her mother's property under the Aged and Infirm Protection Act, still desperately hoped her mother would finally recognize her worth. Seeking this recognition complicated her deciding on residential care for her mother lest her mother interpret her actions as indicative of a desire to be rid of her. I wanted to show Mother that yes, she really needed to be in a hospital or home and that it wasn't me saying it. I was trying to get Mother to go in under her own free will. That was really what I was trying to do. (Daughter: mother with Alzheimer's type dementia) T h e majority of the texts were highly focused on mundane experiences and on the often difficult aspects of the caring work. Metaphors, occurring more in the adult daughters' texts, especially those w h o were unpartnered, referred to caregiving as a 'sacrifice', where the carer was 'losing my life'. O r caregiving was 'taking up all my life', and involved 'walking a tightrope', so highlighting the tensions inherent in the role. In contrast to these metaphors which focus on precariousness and destruction, a metaphor used more commonly by some of the spouses was that of'child', thus both accounting for and describing their spouses' changed behaviour and loss of capacity. Yet, as with the concept of 'caregiving', the metaphor o f ' c h i l d ' suppresses factors relevant to caring for the highly dependent adult, such as the extent to which such caring demands that taboos about bodily functions be broken; and it contrasts most parents' expectations of their child's increasing independence with the carer's knowledge of the probability of increasing deterioration. Some spouses looking after partners with Alzheimer's type dementia

46

There's Nobody There

would suddenly substitute 'he' or 'she' with 'they' or 'it', thus using distancing mechanisms where the condition being described was placed beyond the body of the loved but increasingly (cognitively) absent person. The world inhabited by most of the caregivers was closed and circumscribed. Most texts were intensively focused on the requirements and constrictions of caring. Five texts, however, contained wide-ranging references to the carer's life prior to their becoming a caregiver. These references occurred either in the taped interview or in discussions prior to or after taping. Some account of the implications and function of these references is necessary because the difference in focus was so striking. They raised issues about the nature of the caring task and contributed to my fuller appreciation of the different emotional positionings of carers in the field of caring. Out of these five texts, three (those of a husband, daughter, and wife) were particularly striking because of the carers' depth of depression, or intensity of anger towards, and at times hatred of, their confused parents or spouses. The husband's text was unique within the study because of the extent and frequency of his references to events and institutions beyond the caregiving situation. Not only did his text refer to past events in his childhood and to his experiences as a young man but it contained frequent references to his public persona, to committees, games of bowls, wills, financial and business transactions, and events of moment in the institutions with which he was, or had been, engaged. These references underlined a much higher level of tension and abrupt disjunctions between his past life experiences and his current role as a caregiver than did other texts. Having lived his life until some three years before beyond the home, defining himself as an extremely meticulous person, as selfcentred and engrossed only in his own concerns, he was then thrust into a highly diffuse, disorganized, and increasingly non-communicative domestic world, a world in which his valuing of precision was destructive for him and his wife. This was a situation for which his previous life experiences had utterly failed to prepare him and resulted in his psychological and physical abuse of his wife, abuse that appeared to have gone unrecognized by formal caregivers. Unlike any other text in the study, his contains sudden and extreme oscillations of emotion in his descriptions of how he should and how he did behave. These oscillations of behaviour, affect, and understanding were mirrored and accentuated by the physical structuring of the text

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it