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 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: A
Photographic History of Health Care in Philadelphia. 1991.
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 1
The Gendered Semantics of Community Care 6
Demographic Factors 13
The Relationship between Formal and Informal Care Providers 18

2 The R E A C H Study: Method and Texts 23

Methodological Issues 23
The Participants 27
Interviewing 33
The Analytic Process: Sorting, Ordering, Interrogating 39
The Analytic Process: Analysis of Caregivers' Accounts as Texts 42
Research and Empowerment 49

3 Becoming a Caregiver 53
Gender/Knowledge/Caring 53
The Decision to Care 57
Beginning Caring 70
Employment and Caregiving 78
The Needs of the Confused Older People 83

4 'The Common Round, the Daily Task . . .': Caring in 85

Everyday Life
Caring and Health 86
The Labour and Practice of Caring 88
Caring and Affect 95
'The Common Round, The Daily Task . . .' 100
Gender, Stress, and Positioning in Caring 107
5 Caring for Caregivers: Informal Support Networks 122

Social Networks/Community Support 122

Family Support of Caregivers 124
Support from Husbands 127
Support from Siblings 131
Support from Caregivers' Children 133
Family Support and Carer Substitution 134
Informal Support: Friends 137
Informal Support: Neighbours 141

6 Caring for the Caregivers: the Provision of Formal 144

Support Services

Accessing Services 144

Service Provision to Caregivers 147
Caregivers'Contact with GPs 151
Assessment Processes 154
Caregivers' Contact with Social Workers 162
Caregivers' Contact with District Nurses 166
Day Care Services 167
Support Groups for Caregivers 170
Intermittent and Respite Care Services 174
Caregivers' Evaluation of Service Requirements 181

7 Conclusion 184

Issues in Informal Caregiving 184

Principles of Informal Caregiving 186
Developing a Supportive Relationship with Caregivers 195
Implications of the Partnership Paradigm 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 commit-
ment 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 reflect-
ed 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 under-
researched 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 prob-
lems 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 con-
sequences 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
4 There's Nobody Then

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 user-
pays 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 well-
publicized 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.
 Introduction 7

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 replaced by smaller, more
geographically (and hopefully, socially) integrated homes in local
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 emphasiz-
ing 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 exclud-
ed), 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 care-
giving. 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 increas-
ing 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 half-
h 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 com-
munity 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 1981-

2011, 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 govern-
ments 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 relation-
ship 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 prob-
lematic, 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 methodolog-
ical 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 'repu-
diation'—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 devel-
opment 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-in-
law 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 Single Daughters Sons Dependent

daughters parent(s) *

20-24 1
30-34 1 1
35-39 1
40-44 2
45—49 2 3 2
50-54 1
55-59 2
60-64 1
65-69
70-74 2
75-79 4
80-84 5
85-89 3
90-94 1

TOTAL 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 Wives Husbands Dependent

spouse

2-24
25-29
30-34
35-39
40-44 1
45—49
50-54
55-59
60-64 1
65-69 1 1 1
70-74 3 2 5
75-79 1 3 5
80-84 1
85-90 1

TOTAL 7 6 13
 The REACH Study 29

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 re-
employment 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 full-
time 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 Study 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 2-3 3-4 8-9 10+

Single
daughters 3 0 0 0 0 0
Daughters 2 1 2 0 1 2
Sons 0 0 0 1 0 3
Wives 3 0 0 0 1 3
Husbands 4 0 1 1 0 0
Total 12 1 3 2 2 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.
 The REACH Study 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 neigh-
bours 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 Study 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 re-
contact 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.
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 Mal. O, ho! do you come near me now? no worse man
than Sir Toby to look to me! This concurs directly with
the letter: she sends him on purpose, that I may appear
stubborn to him; for she incites me to that in the letter.
65
'Cast thy humble slough,' says she; 'be opposite with a
kinsman, surly with servants; let thy tongue tang with
arguments
of state; put thyself into the trick of singularity;'
and consequently sets down the manner how; as, a sad
face,
a reverend carriage, a slow tongue, in the habit of some sir
70
of note, and so forth. I have limed her; but it is Jove's
doing, and Jove make me thankful! And when she went
away now, 'Let this fellow be looked to:' fellow! not Malvolio,
nor after my degree, but fellow. Why, every thing
adheres together, that no dram of a scruple, no scruple of a
75
scruple, no obstacle, no incredulous or unsafe circumstance
—What
can be said? Nothing that can be can come between
me and the full prospect of my hopes. Well, Jove,
not I, is the doer of this, and he is to be thanked.

Re-enter Maria, with Sir Toby and Fabian.

Sir To. Which way is he, in the name of sanctity? If

80
all the devils of hell be drawn in little, and Legion himself
possessed him, yet I'll speak to him.

Fab. Here he is, here he is. How is't with you, sir?
how is't with you, man?

Mal. Go off; I discard you: let me enjoy my private:

85
go off.

Mar. Lo, how hollow the fiend speaks within him! did
not I tell you? Sir Toby, my lady prays you to have a
care of him.

Mal. Ah, ha! does she so?

90
Sir To. Go to, go to; peace, peace; we must deal
gently with him: let me alone. How do you, Malvolio?
how is't with you? What, man! defy the devil; consider,
he's an enemy to mankind.

Mal. Do you know what you say?

95
Mar. La you, an you speak ill of the devil, how he
takes it at heart! Pray God, he be not bewitched!

Fab. Carry his water to the wise woman.

Mar. Marry, and it shall be done to-morrow morning,

if I live. My lady would not lose him for more than I'll
100
say.

Mal. How now, mistress!

Mar. O Lord!

Sir To. Prithee, hold thy peace; this is not the way:
do you not see you move him? let me alone with him.

105
Fab. No way but gentleness; gently, gently: the fiend
is rough, and will not be roughly used.
 Sir To. Why, how now, my bawcock! how dost thou,
chuck?

Mal. Sir!

110
Sir To. Ay, Biddy, come with me. What, man! 'tis
not for gravity to play at cherry-pit with Satan: hang him,
foul collier!

Mar. Get him to say his prayers, good Sir Toby, get
him to pray.

115
Mal. My prayers, minx!

Mar. No, I warrant you, he will not hear of godliness.

Mal. Go, hang yourselves all! you are idle shallow

things: I am not of your element: you shall know more
hereafter. [Exit.

120
Sir To. Is't possible?

Fab. If this were played upon a stage now, I could

condemn it as an improbable fiction.

Sir To. His very genius hath taken the infection of

the device, man.

125
Mar. Nay, pursue him now, lest the device take air
and taint.

Fab. Why, we shall make him mad indeed.

Mar. The house will be the quieter.

 Sir To. Come, we'll have him in a dark room and
130
bound. My niece is already in the belief that he's mad:
we may carry it thus, for our pleasure and his penance, till
our very pastime, tired out of breath, prompt us to have
mercy on him: at which time we will bring the device to
the bar and crown thee for a finder of madmen. But see,
135
but see.

Enter Sir Andrew.

Fab. More matter for a May morning.

Sir And. Here's the challenge, read it: I warrant

there's vinegar and pepper in't.

Fab. Is't so saucy?

140
Sir And. Ay, is't, I warrant him: do but read.

Sir To. Give me. [Reads] Youth, whatsoever thou art,

thou art but a scurvy fellow.

Fab. Good, and valiant.

Sir To. [reads] Wonder not, nor admire not in thy mind,
why
145
I do call thee so, for I will show thee no reason for't.

Fab. A good note; that keeps you from the blow of

the law.

Sir To. [reads] Thou comest to the lady Olivia, and in my

sight she uses thee kindly: but thou liest in thy throat; that is
 not the
150
matter I challenge thee for.

Fab. Very brief, and to exceeding good sense—less.

Sir To. [reads] I will waylay thee going home; where if it

be
thy chance to kill me,—

Fab. Good.

155
Sir To. [reads] Thou killest me like a rogue and a villain.

Fab. Still you keep o' the windy side of the law:
good.

Sir To. [reads] Fare thee well; and God have mercy upon
one
of our souls! He may have mercy upon mine; but my hope is
better,
160
and so look to thyself. Thy friend, as thou usest him, and thy
sworn
enemy, Andrew Aguecheek.

If this letter move him not, his legs cannot: I'll give't
him.

Mar. You may have very fit occasion for't: he is

165
now in some commerce with my lady, and will by and by
depart.

Sir To. Go, Sir Andrew; scout me for him at the corner
of the orchard like a bum-baily: so soon as ever thou
seest him draw; and as thou drawest swear horrible; for
seest him, draw; and, as thou drawest, swear horrible; for
170
it comes to pass oft that a terrible oath, with a swaggering
accent sharply twanged off, gives manhood more
approbation
than ever proof itself would have earned him.
Away!

Sir And. Nay, let me alone for swearing. [Exit.

175
Sir To. Now will not I deliver his letter: for the behaviour
of the young gentleman gives him out to be of
good capacity and breeding; his employment between his
lord and my niece confirms no less: therefore this letter,
being so excellently ignorant, will breed no terror in the
180
youth: he will find it comes from a clodpole. But, sir, I will
deliver his challenge by word of mouth; set upon Aguecheek
a notable report of valour; and drive the gentleman,
as I know his youth will aptly receive it, into a most
hideous opinion of his rage, skill, fury and impetuosity.
185
This will so fright them both, that they will kill one another
by the look, like cockatrices.

Re-enter Olivia, with Viola.

Fab. Here he comes with your niece: give them way

till he take leave, and presently after him.

Sir To. I will meditate the while upon some horrid

190
message for a challenge.
[Exeunt Sir Toby, Fabian, and Maria.

Oli. I have said too much unto a heart of stone

And laid mine honour too unchary out:
And laid mine honour too unchary out:
There's something in me that reproves my fault;
But such a headstrong potent fault it is,
195
That it but mocks reproof.

Vio. With the same 'haviour that your passion bears

Goes on my master's grief.

Oli. Here, wear this jewel for me, 'tis my picture;

Refuse it not; it hath no tongue to vex you;
200
And I beseech you come again to-morrow.
What shall you ask of me that I'll deny,
That honour saved may upon asking give?

Vio. Nothing but this;—your true love for my master.

Oli. How with mine honour may I give him that

Which I have given to you?

205
Vio. I will acquit you.

Oli. Well, come again to-morrow: fare thee well:

A fiend like thee might bear my soul to hell. [Exit.

Re-enter Sir Toby and Fabian.

Sir To. Gentleman, God save thee.

Vio. And you, sir.

210
Sir To. That defence thou hast, betake thee to't: of
what nature the wrongs are thou hast done him, I know
not; but thy intercepter, full of despite, bloody as the
hunter, attends thee at the orchard-end: dismount thy tuck,
be yare in thy preparation, for thy assailant is quick, skilful
215
and deadly.

Vio. You mistake, sir; I am sure no man hath any

quarrel to me: my remembrance is very free and clear
from any image of offence done to any man.

Sir To. You'll find it otherwise, I assure you: therefore,

220
if you hold your life at any price, betake you to your
guard; for your opposite hath in him what youth, strength,
skill and wrath can furnish man withal.

Vio. I pray you, sir, what is he?

Sir To. He is knight, dubbed with unhatched rapier

225
and on carpet consideration; but he is a devil in private
brawl: souls and bodies hath he divorced three; and his
incensement
at this moment is so implacable, that satisfaction
can be none but by pangs of death and sepulchre. Hob,
nob, is his word; give't or take't.

230
Vio. I will return again into the house and desire some
conduct of the lady. I am no fighter. I have heard of
some kind of men that put quarrels purposely on others, to
taste their valour: belike this is a man of that quirk.

Sir To. Sir, no; his indignation derives itself out of a

235
very competent injury: therefore, get you on and give him
his desire. Back you shall not to the house, unless you
undertake
that with me which with as much safety you might
answer him: therefore, on, or strip your sword stark naked;
for meddle you must, that's certain, or forswear to wear iron
240
about you.

Vio. This is as uncivil as strange. I beseech you, do

me this courteous office, as to know of the knight what my
offence to him is: it is something of my negligence, nothing
of my purpose.

245
Sir To. I will do so. Signior Fabian, stay you by this
gentleman till my return. [Exit.

Vio. Pray you, sir, do you know of this matter?

Fab. I know the knight is incensed against you, even

to a mortal arbitrement; but nothing of the circumstance
250
more.

Vio. I beseech you, what manner of man is he?

Fab. Nothing of that wonderful promise, to read him

by his form, as you are like to find him in the proof of his
valour. He is, indeed, sir, the most skilful, bloody and
255
fatal opposite that you could possibly have found in any
part of Illyria. Will you walk towards him? I will make
your peace with him if I can.

Vio. I shall be much bound to you for't: I am one

that had rather go with sir priest than sir knight: I care not
260
who knows so much of my mettle. [Exeunt.

Re-enter Sir Toby, with Sir Andrew.

 Sir To. Why, man, he's a very devil; I have not seen
such a firago. I had a pass with him, rapier, scabbard and
all, and he gives me the stuck in with such a mortal motion,
that it is inevitable; and on the answer, he pays you as
265
surely as your feet hit the ground they step on. They say
he has been fencer to the Sophy.

Sir And. Pox on't, I'll not meddle with him.

Sir To. Ay, but he will not now be pacified: Fabian

can scarce hold him yonder.

270
Sir And. Plague on't, an I thought he had been valiant
and so cunning in fence, I'ld have seen him damned
ere I'ld have challenged him. Let him let the matter slip,
and I'll give him my horse, grey Capilet.

Sir To. I'll make the motion: stand here, make a good
275
show on't: this shall end without the perdition of souls.
[Aside] Marry, I'll ride your horse as well as I ride you.

Re-enter Fabian and Viola.

[ To Fab.] I have his horse to take up the quarrel: I have

persuaded him the youth's a devil.

Fab. He is as horribly conceited of him; and pants and

280
looks pale, as if a bear were at his heels.

Sir To. [To Vio.] There's no remedy, sir; he will fight

with you for's oath sake: marry, he hath better bethought
him of his quarrel, and he finds that now scarce to be worth
talking of: therefore draw, for the supportance of his vow;
285
he protests he will not hurt you.

Vio. [Aside] Pray God defend me! A little thing

would make me tell them how much I lack of a man.

Fab. Give ground, if you see him furious.

Sir To. Come, Sir Andrew, there's no remedy; the

290
gentleman will, for his honour's sake, have one bout with
you; he cannot by the duello avoid it: but he has promised
me, as he is a gentleman and a soldier, he will not hurt you.
Come on; to't.

Sir And. Pray God, he keep his oath!

295
Vio. I do assure you, 'tis against my will. [They draw.

Enter Antonio.

Ant. Put up your sword. If this young gentleman

Have done offence, I take the fault on me:
If you offend him, I for him defy you.

Sir To. You, sir! why, what are you?

300
Ant. One, sir, that for his love dares yet do more
Than you have heard him brag to you he will.

Sir To. Nay, if you be an undertaker, I am for you.

[They draw.

Enter Officers.

Fab. O good Sir Toby, hold! here come the officers.

 Sir To. I'll be with you anon.

305
Vio. Pray, sir, put your sword up, if you please.

Sir And. Marry, will I, sir; and, for that I promised

you, I 'll be as good as my word: he will bear you easily
and reins well.

First Off. This is the man; do thy office.

310
Sec. Off. Antonio, I arrest thee at the suit of Count Orsino.

Ant. You do mistake me, sir.

First Off. No, sir, no jot; I know your favour well,

Though now you have no sea-cap on your head.
315
Take him away: he knows I know him well.

Ant. I must obey. [To Vio.] This comes with seeking you:
But there's no remedy; I shall answer it.
What will you do, now my necessity
Makes me to ask you for my purse? It grieves me
320
Much more for what I cannot do for you
Than what befalls myself. You stand amazed;
But be of comfort.

Sec. Off. Come, sir, away.

Ant. I must entreat of you some of that money.

325
Vio. What money, sir?
For the fair kindness you have show'd me here,
And, part, being prompted by your present trouble,
 d, pa t, be g p o pted by you p ese t t oub e,
Out of my lean and low ability
I'll lend you something: my having is not much;
330
I'll make division of my present with you:
Hold, there's half my coffer.

Ant. Will you deny me now?

Is't possible that my deserts to you
Can lack persuasion? Do not tempt my misery,
Lest that it make me so unsound a man
335
As to upbraid you with those kindnesses
That I have done for you.

Vio. I know of none;

Nor know I you by voice or any feature:
I hate ingratitude more in a man
Than lying, vainness, babbling, drunkenness,
340
Or any taint of vice whose strong corruption
Inhabits our frail blood.

Ant. O heavens themselves!

Sec. Off. Come, sir, I pray you, go.

Ant. Let me speak a little. This youth that you see here
I snatch'd one half out of the jaws of death;
345
Relieved him with such sanctity of love;
And to his image, which methought did promise
Most venerable worth, did I devotion.

First Off. What's that to us? The time goes by: away!

Ant. But O how vile an idol proves this god!

350
Thou hast, Sebastian, done good feature shame.
In nature there's no blemish but the mind;
None can be call'd deform'd but the unkind:
Virtue is beauty; but the beauteous evil
Are empty trunks, o'erflourish'd by the devil.

355
First Off. The man grows mad: away with him! Come,
come, sir.

Ant. Lead me on. [Exit with Officers.

Vio. Methinks his words do from such passion fly,

That he believes himself: so do not I.
Prove true, imagination, O, prove true,
360
That I, dear brother, be now ta'en for you!

Sir To. Come hither, knight; come hither, Fabian:

we'll whisper o'er a couplet or two of most sage saws.

Vio. He named Sebastian: I my brother know

Yet living in my glass; even such and so
365
In favour was my brother, and he went
Still in this fashion, colour, ornament,
For him I imitate: O, if it prove,
Tempests are kind and salt waves fresh in love! [Exit.

Sir To. A very dishonest paltry boy, and more a coward

370
than a hare: his dishonesty appears in leaving his friend
here in necessity and denying him; and for his cowardship,
ask Fabian.

Fab. A coward, a most devout coward, religious in it.

Si A d 'Slid I'll ft hi i db t hi
 Sir And. 'Slid, I'll after him again and beat him.

375
Sir To. Do; cuff him soundly, but never draw thy
sword.

Sir And. An I do not,— [Exit.

Fab. Come, let's see the event.

Sir To. I dare lay any money 'twill be nothing yet. [Exeunt.

LINENOTES:
Scene IV.] Scene VII. Pope.
Olivia's garden.] Capell. Olivia's house. Rowe.
[1] he says he'll] say, he will Theobald.
[2, 3] bestow of him? For youth is ... borrow'd] bestow? for youth Is ...
borrow'd of Badham conj.
[2] of] on Pope.
[4,5] I speak ... civil] Printed as in Pope; as one line in Ff.
[5] Where is] Pope. Where's Ff.
[7-10] Where is ... rave?] As prose in Pope; as three lines in Ff, ending
madam ... madam ... rave? As three lines in Hanmer, ending madam ...
possest ... rave?
[8] He's] He is Hanmer.
very] om. Hanmer.
[11] nothing] nothing else Hanmer, who reads lines 11-14 as four verses,
ending smile; ... guard ... man ... hither.
[13] in 's] in his Hanmer.
[14] [Exit M.] Dyce.
I am] I'm Pope.
[15] merry] mercy F2.
Re-enter M. with Malvolio.] Dyce. Enter Malvolio. Ff (after hither, line 14).
[16] How] Ol. How F2.
[17] ho, ho] F1. ha, ha F2 F3 F4. om. Capell, reading How now ... thou?
as one line.
[Smiles fantastically. Rowe (smile. ed. I.)
[18, 19] Smilest ... occasion] As one line in Ff.
[20-25] Sad ... thee?] Printed as seven lines in Ff, ending sad ... blood ...
that? ... true ... all ... man ... thee?
[23] is] it F2. has it Capell.
[24] Oli.] Mal. F1.
[28] the sweet] that sweet Rowe (ed. 2).
[38] meanest] meanst F1.
[47] Thy] My Lettsom conj.
[53] very] a very Rann.
[54] Count] Duke Rowe.
[57] [Exit Servant.] Capell.
[58] cousin] uncle Rowe (ed. 2).
[60] [Exeunt O. and M.] Capell. Exit. Ff.
[61] Scene VIII. Pope.
[66] tang with] langer with F1. tang Capell.
[70] Jove's] God's Halliwell. Love's Grant White conj.
[71] Jove] God Halliwell. Love Grant White conj.
[78] Re-enter....] Capell. Enter T., F., and M. Ff.
[79] Scene IX. Pope.
sanctity] sanity S. Walker conj.
[82] How is't] Sir To. How is't Anon. conj.
[84] private] privacy Rowe.
[91] me] him Rowe.
do you] do you do F4.
[95] an] Capell. and Ff. if Pope.
[103] this] that F4.
[104] let me alone with him] Omitted in F3 F4.
[107] bawcock] F1 F2. havock F3 F4.
[110] Ay, Biddy, come with me.] See note (xi).
[116] Mar.] Fab. Anon. conj.
[125] lest] F4. least F1 F2 F3.
[128] will] well F2.
[136] Scene X. Pope.
[140] Ay, is't] Collier. I, is't? F1 F2. I, is't? F3 F4. Ay, is it, Boswell.
[141] [Reads.] Rowe.
[146] good] very good Rowe (ed 1).
[151] to] om. Rowe.
sense—less] sence-lesse F1 F2. sense-lesse F3. sense-less F4. senseless
Capell.
[159] mine] thine Johnson conj.
[162] If] To. If Ff.
[168] bum-baily] bum-bailiff Theobald.
[169] horrible] F1. horribly F2 F3 F4.
[180] it comes] F1 F2. that it comes F3 F4.
[186] Re-enter O. and V.] Collier (after line 184). Enter O. and V. Ff.
[187] Scene XL Pope.
[190] [Exeunt Sir T., F. and M.] Capell. Exeunt. F2 F3 F4. om. F1.
[191] I have] I've Pope.
[192] out] Theobald. on't Ff.
[196, 197] 'haviour that your ... Goes ... grief] 'haviour Your ... goes ...
grief Capell conj.
[197] Goes ... grief] Rowe. Goes ... greefes F1 F2. Goes ... griefs F3 F4.
Go ... griefs Malone.
[202] That honour saved] That honour (sav'd) F1 F2. That (honour sav'd)
F3 F4.
[208] Scene XII. Pope.
[212] intercepter] interpreter Warburton.
[216] sir; I am sure] Theobald. sir I am sure, F1 F2. sir, I am sure, F3 F4.
sir, I am sure Rowe.
[222] man] a man F3 F4.
[224] knight] a knight Collier MS.
unhatched] unhack'd Pope. an hatcht Malone conj.
[229] nob] nod Rowe (ed. 2).
[234] Sir, no] No, sir, no Hanmer.
derives] drives F4.
[235] competent] F4. computent F1 F2 F3.
[238] him:] F1 F3 F4. him? F2. to him; Hanmer.
or] and Hanmer.
your sword] you of sword Anon. conj.
[241] as uncivil] an uncivil Capell (corrected in MS.).
[242] as to know] to know Capell.
[260] [Exeunt.] om. Capell. See note (xii).
Re-enter....] Capell. Enter Toby and Andrew. Ff. Re-enter Sir T. with Sir A.
hanging back. Collier (Collier MS.).
[261] Scene XIII. Pope. Scene V. Dyce and Staunton.
[262] firago] virago Rowe.
[263] stuck in] stuck—in Johnson. stuck-in, Capell. stuckin Singer.
[264] you] your F2.
[265] hit] Rowe. hits Ff.
[269] yonder] om. Rowe.
[270] an] Theobald. and Ff. if Pope.
[273] Capilet] Capulet Dyce.
[276] [Aside] Theobald.
Re-enter F. and V.] Enter F. and V. Ff. om. Capell. Enter F. and V.
unwillingly. Collier MS.
[277] [To Fab.] Rowe.
take up] make up Anon. conj.
[281] [To Vio.] Capell.
[282] oath sake] oath's sake Capell.
[283] scarce to be] to be scarce Capell conj.
[286] [Aside] Capell.
[295] Scene XIV. Pope.
[They draw.] Rowe. They go back from each other. Collier (Collier MS.).
Enter A.] Ff (after line 294). Enter A.; draws, and runs between. Capell.
[298] [Drawing. Rowe.]
[302] [They draw.] Edd. Draws. Rowe.
Enter Officers.] Enter two Officers. Capell. Enter Officers. Dyce and
Staunton (after line 308).
[304] [To Antonio. Capell.]
[305] [To Sir Andrew. Rowe.]
[310-312] As two lines in Capell, ending suit ... sir.
[310] Count] Duke Rowe.
[316] [To Vio.] Collier.
[318, 319] do, now ... purse?] Dyce and Staunton. do: now ... purse. F1.
doe? now ... purse. F2 F3 F4.
[324] money] money back Capell, reading 323-325 as two lines, ending
you ... sir?
[331] Hold, there's] Hold, There's S. Walker conj.
there's] there is Hanmer.
now?] F3 F4. now, F1 F2.
[334] Lest] F4. Least F1 F2 F3.
[339] lying, vainness, babbling, drunkenness] Steevens (1793). lying,
vainnesse, babling drunkennesse Ff. lying vainness, babbling drunkenness
Rowe (ed. 2).
[342] pray you, go] pray, go S. Walker conj., ending the line at little. pray
you Lloyd conj.
[343] speak] but speak Hanmer.
This youth] Why, this youth Hanmer, ending lines 342, 343 at speak ...
here.
[345] love;] Ff. love,— Capell. After this S. Walker supposes a line to be
lost.
[346] his] this S. Walker conj.
[347] venerable] veritable Collier (Collier MS.).
[349] vile] Pope. vilde F1 F2 F3. vild F4.
[353] beauteous evil] beauteous-evil Malone.
[355] The man] Surely the man Hanmer.
Come] 2. Off. Come Capell. This word begins a line in Ff.
[356] with Officers.] Theobald. om. Ff.
[362] we'll] Weel F1. Well F2 F3 F4.
[367] O, if] so if Becket conj.
[368] [Exit.] F2 F3 F4. om. F1.
[373] a most] om. Hanmer.
[374] 'Slid] Od's lid Hanmer.
[375] never] ne'er Hanmer.
[377] An] Theobald. And Ff. If Pope.
not,—] Theobald. not. Ff.
[378] let's] let us Hanmer.
[379] any] om. Hanmer.
[Exeunt.] Rowe. [Exit. Ff.
 ACT IV.

Scene I. Before Olivia's house.

 Enter Sebastian and Clown.

Clo. Will you make me believe that I am not sent for

you?

Seb. Go to, go to, thou art a foolish fellow:

Let me be clear of thee.

5
Clo. Well held out, i' faith! No, I do not know you;
nor I am not sent to you by my lady, to bid you come
speak with her; nor your name is not Master Cesario; nor
this is not my nose neither. Nothing that is so is so.

Seb. I prithee, vent thy folly somewhere else:

10
Thou know'st not me.

Clo. Vent my folly! he has heard that word of some

great man and now applies it to a fool. Vent my folly! I
am afraid this great lubber, the world, will prove a cockney.
I prithee now, ungird thy strangeness and tell me what I
15
shall vent to my lady: shall I vent to her that thou art
coming?

Seb. I prithee, foolish Greek, depart from me:

There's money for thee: if you tarry longer,
I shall give worse payment.

20
Clo. By my troth, thou hast an open hand. These wise
men that give fools money get themselves a good report—
after
fourteen years' purchase.

Enter Sir Andrew Sir Toby and Fabian

 Enter Sir Andrew, Sir Toby, and Fabian.

Sir And. Now, sir, have I met you again? there's for
you.

25
Seb. Why, there's for thee, and there, and there.
Are all the people mad?

Sir To. Hold, sir, or I'll throw your dagger o'er the
house.

Clo. This will I tell my lady straight: I would not be

30
in some of your coats for two pence [Exit.

Sir To. Come on, sir; hold.

Sir And. Nay, let him alone: I'll go another way to

work with him; I'll have an action of battery against him,
if there be any law in Illyria: though I stroke him first,
35
yet it's no matter for that.

Seb. Let go thy hand.

Sir To. Come, sir, I will not let you go. Come, my
young soldier, put up your iron: you are well fleshed;
come on.

40
Seb. I will be free from thee. What wouldst thou now?
If thou darest tempt me further, draw thy sword.

Sir To. What, what? Nay, then I must have an ounce

or two of this malapert blood from you.

Enter Olivia.
 Oli. Hold, Toby; on thy life, I charge thee, hold!

45
Sir To. Madam!

Oli. Will it be ever thus? Ungracious wretch,

Fit for the mountains and the barbarous caves,
Where manners ne'er were preach'd! out of my sight!
Be not offended, dear Cesario.
Rudesby, be gone!
[Exeunt Sir Toby, Sir Andrew, and Fabian.
50
I prithee, gentle friend,
Let thy fair wisdom, not thy passion, sway
In this uncivil and unjust extent
Against thy peace. Go with me to my house;
And hear thou there how many fruitless pranks
55
This ruffian hath botch'd up, that thou thereby
Mayst smile at this: thou shalt not choose but go:
Do not deny. Beshrew his soul for me,
He started one poor heart of mine in thee.

Seb. What relish is in this? how runs the stream?

60
Or I am mad, or else this is a dream:
Let fancy still my sense in Lethe steep;
If it be thus to dream, still let me sleep!

Oli. Nay, come, I prithee: would thou'ldst be ruled by me!

Seb. Madam, I will.

Oli. O, say so, and so be! [Exeunt.

 LINENOTES:
Scene I. Before....] The street before.... Capell. The street. Rowe. om. Ff.
[9, 10] Arranged as in Capell; as prose in Ff.
[13] great lubber, the world] great lubberly World Collier MS. great luberly
word Grant White (Douce conj.). lubberly word Staunton conj. See note
(xiii).
[15] that thou] that that F2.
[17] Greek] F3 F4. greeke F1 F2. geck Hanmer (Theobald conj.). grig or
gleeker Anon. conj.
[17-19] Arranged as in Capell; as prose in Ff.
[19] worse] worser Anon. conj.
[21] report—] Staunton. report, Ff.
[24] [Striking Sebastian. Rowe.
[25] and there, and there] and there, and there, and there Capell.
[Beating Sir Andrew. Rowe.
[30] [Exit.] Rowe. om. Ff.
[31] Come on, sir] Come, sir Rann. Come off, sir Anon. conj.
[Holding Sebastian. Rowe.
[34] be] he F2.
stroke] F1 F2. strook F3. struck F4.
[38] put up ... fleshed] [To Sir And.] put up ... fleshed Badham conj.
[40] [Wrenches from him and draws. Capell.
[43] [They draw and fight. Rowe.
[44] Scene ii. Pope.
[50] [Exeunt....] Capell. Exeunt Sir T. and Sir A. Rowe.
[55] botched] bouch'd Becket conj.
[63] prithee] pray Pope.

Scene II. Olivia's house.

 Enter Maria and Clown.

Mar. Nay, I prithee, put on this gown and this beard;

make him believe thou art Sir Topas the curate: do it
quickly; I'll call Sir Toby the whilst. [Exit.

Clo. Well, I'll put it on, and I will dissemble myself

5
in 't; and I would I were the first that ever dissembled in
such a gown. I am not tall enough to become the function
well, nor lean enough to be thought a good student; but
to be said an honest man and a good housekeeper goes as
fairly as to say a careful man and a great scholar. The
10
competitors enter.

Enter Sir Toby and Maria.

Sir To. Jove bless thee, master Parson.

Clo. Bonos dies, Sir Toby: for, as the old hermit of

Prague, that never saw pen and ink, very wittily said to a
niece of King Gorboduc, 'That that is is;' so I, being master
15
Parson, am master Parson; for, what is 'that' but 'that,'
and 'is' but 'is'?

Sir To. To him, Sir Topas.

Clo. What, ho, I say! peace in this prison!

Sir To. The knave counterfeits well; a good knave.

20
Mal. [within] Who calls there?

Clo. Sir Topas the curate, who comes to visit Malvolio

 C o S opas t e cu ate, o co es to st a o o
the lunatic.

Mal. Sir Topas, Sir Topas, good Sir Topas, go to my

lady.

25
Clo. Out, hyperbolical fiend! how vexest thou this
man! talkest thou nothing but of ladies?

Sir To. Well said, master Parson.

Mal. Sir Topas, never was man thus wronged: good

Sir Topas, do not think I am mad: they have laid me here
30
in hideous darkness.

Clo. Fie, thou dishonest Satan! I call thee by the most

modest terms; for I am one of those gentle ones that will
use the devil himself with courtesy: sayest thou that house
is dark?

35
Mal. As hell, Sir Topas.

Clo. Why, it hath bay windows transparent as barricadoes,

and the clearstores toward the south north are as lustrous
as ebony; and yet complainest thou of obstruction?

Mal. I am not mad, Sir Topas: I say to you, this

40
house is dark.

Clo. Madman, thou errest: I say, there is no darkness

but ignorance; in which thou art more puzzled than the
Egyptians in their fog.

Mal. I say, this house is as dark as ignorance, though

45
45
ignorance were as dark as hell; and I say, there was never
man thus abused. I am no more mad than you are: make
the trial of it in any constant question.

Clo. What is the opinion of Pythagoras concerning

wild fowl?

50
Mal. That the soul of our grandam might haply inhabit
a bird.

Clo. What thinkest thou of his opinion?

Mal. I think nobly of the soul, and no way approve

his opinion.

55
Clo. Fare thee well. Remain thou still in darkness:
thou shalt hold the opinion of Pythagoras ere I will allow of
thy wits; and fear to kill a woodcock, lest thou dispossess
the soul of thy grandam. Fare thee well.

Mal. Sir Topas, Sir Topas!

60
Sir To. My most exquisite Sir Topas!

Clo. Nay, I am for all waters.

Mar. Thou mightst have done this without thy beard

and gown: he sees thee not.

Sir To. To him in thine own voice, and bring me word

65
how thou findest him: I would we were well rid of this
knavery. If he may be conveniently delivered, I would he
were; for I am now so far in offence with my niece, that I
cannot pursue with any safety this sport to the upshot. Come
by and by to my chamber. [Exeunt Sir Toby and Maria.

70
Clo. [Singing] Hey, Robin, jolly Robin,
Tell me how thy lady does.

Mal. Fool,——

Clo. My lady is unkind, perdy.

Mal. Fool,——

75
Clo. Alas, why is she so?

Mal. Fool, I say,——

Clo. She loves another—Who calls, ha?

Mal. Good fool, as ever thou wilt deserve well at my

hand, help me to a candle, and pen, ink and paper: as I
80
am a gentleman, I will live to be thankful to thee for't.

Clo. Master Malvolio?

Mal. Ay, good fool.

Clo. Alas, sir, how fell you besides your five wits?

Mal. Fool, there was never man so notoriously abused:

85
I am as well in my wits, fool, as thou art.

Clo. But as well? then you are mad indeed, if you be

no better in your wits than a fool.

Mal They have here propertied me; keep me in darkness

 Mal. They have here propertied me; keep me in darkness,
send ministers to me, asses, and do all they can to
90
face me out of my wits.

Clo. Advise you what you say; the minister is here.

Malvolio, Malvolio, thy wits the heavens restore! endeavour
thyself to sleep, and leave thy vain bibble babble.

Mal. Sir Topas,——

95
Clo. Maintain no words with him, good fellow. Who,
I, sir? not I, sir. God be wi' you, good Sir Topas. Marry,
amen. I will, sir, I will.

Mal. Fool, fool, fool, I say,——

Clo. Alas, sir, be patient. What say you, sir? I am

100
shent for speaking to you.

Mal. Good fool, help me to some light and some

paper: I tell thee, I am as well in my wits as any man in
Illyria.

Clo. Well-a-day that you were, sir!

105
Mal. By this hand, I am. Good fool, some ink, paper
and light; and convey what I will set down to my lady: it
shall advantage thee more than ever the bearing of letter
did.

Clo. I will help you to't. But tell me true, are you
110
not mad indeed? or do you but counterfeit?
 Mal. Believe me, I am not; I tell thee true.

Clo. Nay, I'll ne'er believe a madman till I see his

brains. I will fetch you light and paper and ink.

Mal. Fool, I'll requite it in the highest degree: I

115
prithee, be gone.

Clo. [Singing] I am gone, sir,

And anon, sir,
I'll be with you again,
In a trice,
120
Like to the old vice,
Your need to sustain;

Who, with dagger of lath,

In his rage and his wrath,
Cries, ah, ha! to the devil:
125
Like a mad lad,
Pare thy nails, dad;
Adieu, goodman Drivel. [Exit.

LINENOTES:
Scene ii.] Scene iii. Pope.
Olivia's house.] Rowe.
[3] [Exit.] Exit M. Theobald.
[6] tall] fat Reed (1803) (Farmer conj.). pale Tyrwhitt conj. of taille Becket
conj.
[7] student] studient F1.
[9] careful] graceful Hanmer (Warburton).
[10] Enter Sir T. and M.] Theobald. Enter Toby. Ff.
[11] Jove] God Edd. conj.
[11, 14,
15, 27] master] M. Ff and passim.
[13] Prague] Rowe. Prage F1 F2 F3. Prauge F4.
[14] Gorboduc] Gorboduck Pope. Gorbodacke F1 F2 F4. Gorbodack F3.
[18] [rapping at an inner door. Capell.
[20] Mal. [within] Malvolio within (as a stage direction) Mal. Ff.
[26] nothing but of] of nothing but Anon. conj.
[33] that] this Rann. the or that the Anon. conj.
[37] clearstores] cleere stores F1. cleare stones F2. clear stones F3 F4.
clear stories Boswell (Blakeway conj.).
[49] wild fowl] the soul Theobald conj.
[50] haply] Capell. happily Ff.
[58] soul] soule F1. house F2 F3 F4.
[61] waters] wanters or ventures Anon. conj.
[65] well] F1. all F2 F3 F4. all well Collier MS.
[68] to the upshot] Rowe. the upshot Ff.
[69] chamber] champer F2.
[Exeunt....] Exit with Maria. Theobald. Exit Ff.
[70] Scene iv. Pope.
[Singing] Rowe.
[70, 71] Hey ... does.] Hey, jolly Robin, tell to me, How does thy lady do?
Farmer conj.
[71] thy] my Rowe (ed. 2).
[83] besides] beside Capell conj.
[86] you are] thou art Rowe (ed. 2).
[88] have here] have Pope.
[96] be wi' you] buy you Ff. b' w' you Pope.
[97] sir, I will] F1. sir, I will sir F2 F3 F4.
[109, 110] are you not] are you Johnson conj.
[110] or] and Malone conj.
[116-127] Arranged as in Capell. As eight lines in Ff.
[116] [Singing] Rowe. on. Ff.
[119, 120] In a trice, Like to the] With a trice, Like the Collier MS. With a
trice, Like to the Collier (ed. 2).
[126] dad;] dad, Ff. dad? Farmer conj.
[127] goodman Drivel] Rowe (ed. 2). good man diuell F1. good man Direll
F2. good man Devil F3 F4. goodman Mean-evil Johnson conj. good Mean-
evil Mason conj. goodman Civil, or good man, be civil Anon. conj.

Scene III. Olivia's garden.

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