Carers, Care Homes and the British Media: Time to Care [1st ed.] 9783030357672, 9783030357689

Table of contents :
Front Matter ....Pages i-xi
Introduction (Hannah Grist, Ros Jennings)....Pages 1-16
Autoethnographies of Care (Hannah Grist, Ros Jennings)....Pages 17-38
Little More Than Fools and Monsters: Care Workers in the UK Media (Hannah Grist, Ros Jennings)....Pages 39-63
Conversations with Carers (Hannah Grist, Ros Jennings)....Pages 65-98
Concluding Thoughts (Hannah Grist, Ros Jennings)....Pages 99-108
Back Matter ....Pages 109-112

Citation preview

Carers, Care Homes and the British Media Time to Care

Hannah Grist Ros Jennings

Carers, Care Homes and the British Media

Hannah Grist • Ros Jennings

Carers, Care Homes and the British Media Time to Care

Hannah Grist University of Bristol Bristol, UK

Ros Jennings Centre for Women, Ageing and Media University of Gloucestershire Cheltenham, UK

ISBN 978-3-030-35767-2    ISBN 978-3-030-35768-9 (eBook) https://doi.org/10.1007/978-3-030-35768-9 © The Editor(s) (if applicable) and The Author(s), under exclusive licence to Springer Nature Switzerland AG 2020 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Cover pattern © Melisa Hasan Cover design: eStudioCalamar This Palgrave Macmillan imprint is published by the registered company Springer Nature Switzerland AG. The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

This book is dedicated to all current and former care home workers, to those we worked alongside in care homes over the years, and to the residents and their families that we were privileged to know.

Preface

The thinking behind this book began in 2012 when Hannah became a PhD student under Ros’ supervision. Whilst Hannah’s doctoral research was on questions of memory, identity and heritage, she became increasingly interested in explorations of ageing, gender and representation. Hannah joined the Centre for Women, Ageing and Media (WAM) as a researcher in 2013 and became co-Director of the Centre with Ros in 2017. WAM brings together researchers from across the world, working in multiple disciplines with myriad research methods and foci. Taking a broadly feminist and cultural studies approach, WAM aims to position emerging research about older people in relation to popular media/popular culture alongside the more established areas of ageing studies research. Through collaboration and interdisciplinary perspectives WAM research projects seek to make beneficial interfaces that will lead to more nuanced understandings of the representations, identities and lived experiences of ageing. This book makes a significant contribution to the WAM research area, bringing together multiple disciplinary and methodological lenses to bear on the representations and experiences of being a paid care worker for older people in Britain. Ros and Hannah found many similarities in their life courses, their experiences and their approaches, as if they had lived parallel lives separated by nearly 25 years. Ros worked as a care assistant in the early 1990s whilst she completed her MA thesis at the University of York. Hannah began work as a care assistant in the early 2000s as she completed her MA at the University of Bristol and PhD at the University of Gloucestershire. vii

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Both Ros and Hannah have experience of caring for family members— Hannah for her mother, and Ros for her wife. Both were (and continue to be) fascinated by questions of care and frustrated by the way the media represents paid care work. As self-confessed ‘methods geeks’ with a penchant for autoethnography and multiple qualitative methods, Ros and Hannah embarked upon a project to research and document the experiences of real carers who worked in real British care homes, hoping to challenge and reimagine the way care workers and care homes are thought about and represented in the media. The following book therefore represents the culmination of nearly eight years of thinking, talking, sharing, arguing, documenting and critiquing the representation of carers and care homes in the British media. It makes a timely contribution to the developing interdisciplinary canon of care home research, using ageing studies and media studies perspectives to situate the voices and experiences of paid care workers at the centre. Bristol, UK Cheltenham,  UK

Hannah Grist Ros Jennings

Acknowledgements

We have many people to thank for their support and encouragement as we researched and wrote this book. In addition to our family and friends, to whom we each owe a great deal, we would like to thank colleagues and research students at the Centre for Women, Ageing and Media (WAM), University of Gloucestershire: Josephine Dolan, Abigail Gardner, Estella Tincknell, Sherryl Wilson, Lisa-Nike Bühring, Caroline Coyle, Caroline Knudsen, Tony Lush and Alison Willmott. It is our joy and privilege to work alongside you all. You each make WAM the vibrant research community that it is today, and we are very grateful for your ongoing support. We would like to thank colleagues and researchers at Ageing, Communication, Technology (ACT), the European Network in Ageing Studies (ENAS), the North American Network in Aging Studies (NANAS) and the Women and Ageing Research Network at the National University of Ireland (NUI Galway), for sharing ideas, supporting our research and offering us platforms to receive insightful feedback on this work as it progressed: Sally Chivers, Line Grenier, Shannon Hebblethwaite, Stephen Katz, Ulla Kriebernegg, Constance Lafontaine, Cathy McGlynn, Barbara Ratzenböck, Kim Sawchuk, Michaela Schrag-Früh, Roberta Maierhofer and Maggie O’Neill. We are deeply fortunate to be connected to such fabulous colleagues through these important international networks and look forward to future collaborations. We are indebted to current and former colleagues at the University of Gloucestershire who have supported our research endeavour from the beginning. Colleagues in the School of Media, the School of Education ix

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and Humanities, the Research Administration Office, and the Academic Development Unit. We would like to extend our thanks to all the staff at Palgrave Macmillan and to thank the anonymous peer reviewers for their insightful comments and whose feedback has strengthened this work immeasurably. Finally, we would like to express our deepest gratitude to the current and former care assistants who generously shared their memories and their time with us. We were privileged to work alongside many of you as care assistants, and humbled by the articulate and eloquent ways in which you expressed what caring means to you. The work you do is important and meaningful, and should be much celebrated. We hope this book makes you proud.

Contents

1 Introduction  1 2 Autoethnographies of Care 17 3 Little More Than Fools and Monsters: Care Workers in the UK Media 39 4 Conversations with Carers 65 5 Concluding Thoughts 99 Index109

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CHAPTER 1

Introduction

Abstract  The introduction explores the rationale for this book: to situate the voices of care workers at the centre of research on British care homes. It argues that bringing together media and ageing studies perspectives can challenge representations of care work and care homes. It explores the approach to research design and positions the combination of multiple qualitative methods as an innovative approach to media, ageing and care home studies. The chapter outlines the structure of the book and concludes by highlighting that the way carers and care homes are thought about and represented must urgently evolve if we are to ensure a better quality of care for older people in care homes in Britain and to provide better support for those who ‘do’ care. Keywords  Care homes • Care assistants • Media representation • Autoethnography • Textual analysis • Qualitative interviewing • Gender

Introduction As the ageing1 population of Britain continues to grow significantly and as an increasing proportion of those people become reliant on formalised care, the way care and paid caregivers are represented on screen and 1  Debates on what constitutes ‘old’ or ‘older’ are complex and ongoing in ageing studies. Gullette (2004), for example, argues we are less aged by chronology than we are by culture, and scholars in health and disability studies suggest we can be ‘aged by disability’ (cf. Lamb

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thought about in everyday life will continue to be both contentious and important. Whilst the care home sector is worth around £15.9 billion a year to the British economy (CMA 2017, online) current cultural narratives continue to position the ageing population as an apocalyptic demographic (Robertson 1990) and a grey tsunami (Barusch 2013; Chivers 2013) resulting in a net drain on resources. Critiques of neoliberal ageist ideologies like these (Gullette 2004, 2017; Cruikshank 2009; Sandberg and Marshall 2017) highlight the ways that representations of the ‘old-old’ (Byetheway 1995) or fourth age (Gilleard and Higgs 2013) drive narratives of a fear of ageing. Those who have been classified as the fourth age (frail and dependent older people) are constructed as an anathema to the progress narratives of neoliberal individualism characteristic of the third age (Katz and Calasanti 2014; Katz and Marshall 2003). Narratives that have produced concepts of successful and active ageing (Rowe and Kahn 1998) are dominant in most western societies. From this perspective, those who do not maintain individual autonomy to the end of their lives have failed and as a result (in Britain especially) are hidden away from public view in care homes. Their very invisibility act as hauntings that teach us to fear growing old and to hide practices of care from society in general. As Sally Chivers and Ulla Kriebernegg argue in their important work Care Home Stories (2017) ‘institutional care for seniors offers a cultural repository for fears and hopes about an ageing population’ (18). Whilst debates have long continued around what has become termed the ‘media effects theory’ (cf. Potter 2012) in this book we argue that the way in which groups are represented in popular media formats impacts upon the way audiences understand and make sense of them. Dominant hegemonic media messages are decoded by audiences (cf. Hall 1980), and as we argue in Chap. 3, we believe messages about care work and care homes perform a vital source of cultural memory work (Zelizer, 2008; Zelizer and Tenenboim-Weinblatt 2014)—they provide a reservoir of cultural constructions about what sorts of people carers are. When care homes are visible on screen and in print their depictions as, at best, a badly run hotel staffed by ineffectual fools or, at worst, a ruthlessly run prison 2015). In this book these non-chronological understandings of ageing are important to the accounts of current and former carers and the way they see themselves represented in the media.

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camp staffed by sadistic caretakers fuels the popular cultural imagination. These depictions undermine and undervalue the work done by real carers in real homes. This short book brings together the voices of current and former carers who are usually underrepresented in research (Chivers and Kriebernegg 2017, 28) to critique some of these representations, adding to the growing body of research that examines the experiences of working or growing old in a care home. There exists a large body of literature on the care home, broadly western in origin. Ethnographic accounts of (particularly American) care homes offer detailed insights into daily life for residents (cf. Gubrium 1975; Diamond 1986; Henderson and Vesperi 1995; Stafford 2003; DeForge et al. 2011). Health care and nursing studies approach care home residents from medical perspectives, paying close attention to those living with conditions such as dementia (cf. Fossey et al. 2006; Waite et al. 2009; Downs 2014), and handbooks offer clinical guidance to nursing staff on topics from continence care to medication administration (cf. Nazarko 2002). Scholarship about the care home also takes the form of training manuals and best practice guides aimed at care workers and nurses (cf. Goode and Booth 2012; Morley et al. 2013; Mulley et al. 2014; Rawles 2017) designed to aid the professional development of those who work within care facilities. Guidebooks targeted at families faced with the task of choosing a long-term care facility for relatives also form a substantial contribution to the literature on care work (cf. Goudge 2004; Hurtley and Burton-Jones 2008; Dalley 2014). Significantly there also exists a growing body of literature written by family members with loved ones who have lived and died in substandard care homes (cf. Lawrence 2017), accounts which seek to expose poor practice, challenge policy and share ‘lessons learned’ with families in similar positions. Research into care also includes political and feminist perspectives (cf. Tronto 1994; Twigg 2004; Dahl 2017), and a body of literature exists which examines the care home applying economic and organisational lenses (cf. Reynolds et al. 2003; HaffordLetchfield 2011; Palmer 2016), adding business studies perspectives to the care home research canon. Taken together this body of work offers much to our understanding of what care homes are, how they operate and how the people who live within their walls and their families feel about them. It is right and important that the voices of those who experience the care home as recipients of

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care are central to work ‘on’ or ‘about’ the institution, and it is critical to view the care home refracted through various disciplinary lenses. Whilst the experiences of care assistants form sources of data for many of these studies, few situate carers’ voices at the centre of the research. Fewer still seek to augment the narrative voices of current and former care assistants with autoethnographic reflection and detailed textual analysis of media representations. This book acts as a small contribution to address the gap that exists in scholarship. This book draws upon the findings of interviews with a small sample of current and former care assistants drawn from care homes in South Wales and the north and south-west of England, coupled with an analysis of the experiences of the authors through autoethnography, and explores popular media representations of care homes and care assistants which aired during the period within the scope of this study (1989–2019). In keeping with the experiential, lived approach that is privileged in this book, the texts chosen for analysis in this book are those which the authors and participants remembered as being particularly conscious of during the times and spaces in which they performed care work. Bringing together these research methods, this book explores the many ways in which age and caregiving are problematized, represented and performed within Britain. It integrates ageing and media studies approaches in order to critically interrogate experiences and representations of paid caregiving and the role that media plays in shaping those British cultural understandings, privileging the perspectives of care workers throughout. Why Care Homes? In the substantial literature on caregiving outlined above (whilst by no means an exhaustive review) the terms nursing home, retirement home and, less frequently, ‘old peoples’ home are frequently mentioned. Following Froggatt et al. (2009) in their significant work Understanding Care Homes: A Research and Development Perspective we use the term ‘care home’ to refer to ‘institutional care settings that provide long-term care for people with ongoing health or social care needs’ (10). The types of care home that participants in this study worked in or continue to work in varied in terms of geographic location but can all be described broadly as

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small- to medium-­sized long-term residential care settings which specialised in dementia care. We do not wish to obscure the diversity of care settings which make up the care home sector in Britain nor claim that the sample used in this study is representative of this distinctive landscape, recognising that with significant differences in size, funding and policy directives come different challenges and approaches for the care staff that work within them. This book brings together the experiences of people who have worked in care homes in Britain between 1989 and 2019 and examines selected media representations of carers and care homes that emerged during this period. We take 1989 as our starting point, as that was the beginning of one of the authors’ time as a care assistant and forms one of the two autoethnographies that are presented in Chap. 2. Our end point of 2019 reflects the fact that many of those we interviewed for this book in 2017 continue to work as care assistants today, and that our understanding of the media texts and our interpretation of the interview and autoethnographic data have been affected by our ongoing exposure to cultural messages about care work and care homes in the intervening years. The book recognises the significant changes that have taken place in terms of policy and representation and the shifting nature of care work and care homes during this period (cf. Means and Smith 1998; Peace 2003). It acknowledges that the experiences of carers working in care homes in the late 1980s and early 1990s and those that took place in the 2000s are vastly different. Yet, as the following chapters will make clear, the narratives of care work that emerge throughout this book are also strikingly similar. Shared motivations for getting into care work, and similar experiences and common concerns about the way carers are represented in news media and on screen are illuminated in the chapters that follow. The book thus offers a picture of care work in Britain which has changed enormously over the years and yet one which remains beleaguered by structural limitations and problematic representations which undermine and undervalue the work done by dedicated and hardworking carers.

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Who Cares? There are approximately 416,0002 people living with complex health care needs in care homes in Britain today (NIHR 2019, online). The British population is projected to continue growing, reaching over 74 million by 2039, and as such the demand for adult social care increases rapidly in line with demographic growth. A recent study on the impact of population ageing on the future provision of end-of-life care by Bone et al. (2018) notes that if current trends continue, the care home will be the most common place of death by 2040. Thus, simply to sustain current levels, care home provision and care provided in the community must double by 2040. The importance and continuing and growing need for care homes and care workers in Britain is therefore hard to dispute. The precise number of paid carers currently working in the UK is difficult to estimate. The Cavendish Review3 (2013) projected there are 1.3 million unregistered healthcare assistants and support workers in Britain (14) and estimated the number of people employed outside the National Health Services (NHS) as paid care assistants was around 612,500 (15). Of all adult social care workers in the UK the private sector employs over two-thirds (Bloodworth 2018), and it is estimated that around 80% of all paid care work in Britain is performed by women (Skills for Care 2018, online). Thus, care work is gendered work (Twigg 2004; Cancian and Oliker 2000). Twigg (2004) states that ‘care work is quintessentially gendered work both in the sense that it is performed predominantly by women, and in that it is constructed around gendered identities’ (68). Histories of caregiving critique biological and essentialist discourses which suggest an aptitude to provide emotional and physical care is one predisposed in women. Linked to reproductive capabilities and the association between women and motherhood, from this perspective care work is not viewed as 2  According to the National Institute for Health Research in the research project ENRICH, the 416,000 older people living in care homes in Britain account for 4% of the population aged 65 years and over, rising to 16% of those aged 85 or older. 3  Led by Camilla Cavendish, the Independent Review into Healthcare Assistants and Support Workers in the NHS and social care settings was commissioned by the Department of Health and Social Care in 2013. In the wake of the Francis Inquiry into Mid-Staffordshire NHS Trust which took place between 2005 and 2009, the Cavendish Review makes a number of recommendations around the training and support of health care workers who perform care in hospitals, care homes, and care recipients’ own homes.

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‘skilled work that is learned through practice and shaped by cultural values and economic incentives’ (Cancian and Oliker 2000, 3). This book takes the perspective that the connection between women and care is a socially constructed phenomenon (Harrington Meyer 2000), and that cultural representations of care work and care workers are pivotal in public understandings of what it means to ‘do’ and perform care. The authors are both white European women from working-class backgrounds, aged between 27 and 59 at the time of writing, who worked as care assistants to fund their studies in higher education in their twenties and thirties (see Chap. 2). No longer employed as paid care assistants, now educated to doctoral level and specialists in the disciplines of media and ageing studies, the cultural capital and habitus (Bourdieu 1984) of the authors at the time of writing were different to those we interviewed for this project. Those we spoke to for this project, however, mirrored national demographic trends in terms of those who typically perform paid care work in Britain. We interviewed eight current or former carers, seven of whom were female, all of whom were white English or Welsh, with an average age of 55 years, and a typical length of service in the care sector of approximately seven years. Our use of a small sample of participants and selected media representations pertinent to the scope of the study (see below) allowed us to find depth and elicit thick description within our data sets (Geertz 1973). This resulted in vivid depictions of real lives and meaningful personal experiences of care work which were nested in real-world contexts (Miles and Huberman 1994, 10). The following section outlines the methodological approach undertaken for this book in more detail. Methodological Approach This short book uniquely synthesises several qualitative research methods to explore the experiences of former and current care assistants in British care homes and their representation in the media. The first is a collaborative autoethnography (cf. Chang et al. 2013) written by the authors, who have experiences of working as care assistants in British care homes, though these were encounters with care which are separated by nearly 20 years. Autoethnography seeks ‘to describe and systematically analyse personal experience in order to understand cultural experience’ (Ellis et al. 2011, online). Autoethnography has been used to explore diverse topics, from illness and disease (cf. Ellis 1995), to questions about race and ethnicity (Boylorn 2008; Toyosaki et al. 2009), to football fandom (Parry 2012),

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and is even gaining ground as a research methodology in business studies (cf. Fürst 2017). Building on our earlier work using intergenerational collaborative autoethnography (Ferris-Taylor et  al. 2019) this book makes a case for the importance of personal experience and storytelling as a methodological approach for consciousness raising. As we explored above, care work is gendered work, performed largely by women. With care assistants marginalized and often demonised in the British media a feminist autoethnographic (Ettore 2017) approach was appropriate as ‘a method of being, knowing and doing that combines two concerns: telling the stories of those who are marginalized and making good use of our own experience’ (Allen and Piercy 2005, 156). We needed to be selective about the content of our reflections, both due to the structural limitations imposed by word count and to ensure that our reflections worked in dialogue with the texts analysed in Chap. 3 and the conversations with carers explored in Chap. 4. To explore in detail representations of carers and care homes in the British media, the second research method employed in this book is textual analysis (Fairclough 2003). Due to the limitations imposed by length, this book does not seek to present an in-depth analysis of the media treatment of carers, but through textual analysis (Fairclough 2003) of selected media texts that participants and authors remembered being particularly conscious of during the times and spaces in which they performed care work (see Chap. 3), we explore how media technologies and media representations (from covert surveillance strategies to detect elder abuse to popular fiction television series and films) are a powerful interface between care workers, care recipients and society. We are hyperaware that representations of old age in popular media forms are ‘highly instrumental in the formation of superficial and limited views of ageing and old age (lacking awareness of diversity and in-depth engagements with everyday cultural encounters/experiences)’ (Jennings and Gardner 2012, 3). In Chap. 3 we map the shapes and contents of these important texts and argue that collectively these depictions powerfully affect public views of care home environments and the carer/older person relationship as well as the identities and experiences of carers themselves. In order to augment and add depth to the autoethnographic and textual analyses presented in the book, eight semi-structured qualitative interviews were undertaken with former and current care assistants. Each lasting an average of 2–3 hours, the interviews were rich and detailed and

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contained many more themes, concepts and ideas than we have been able to capture in this book. Most of the participants were known to the authors prior to the commencement of the project, as former colleagues or friends. We were alert to the fact that having established relationships with many of our participants before the interview posed challenges for data collection and data analysis (Seidman 2006). We worked hard to ensure assumptions about the participant’s answers were fully interrogated when interpreting the data, and that our insights and lessons learned from each interview were acknowledged, addressed and carried with us into each subsequent interview. Through our shared history and our relationship, an implicit understanding of our shared habitus (Bourdieu 1984) enriched our interviews with current and former carers and transformed the research process. It was important to us to adopt an approach to qualitative interviewing in which we shared our experiences of care work freely with our participants. Ours was an approach ‘situated within the context of emerging and well-­ established relationships among participants and interviewers’ (Ellis et al. 2011, online). We did not fear our approach would jeopardise the quality of the data or lead our participant towards certain responses. In fact, as we were well known to our interviewees, many of the stories they told about their experiences in care homes were narratives in which one of the authors also featured. It would therefore have been problematic to try to adopt a distanced or neutral approach to these interviews. The spirit of sharing and exchange that emerged throughout out interviews can be traced in Chap. 4, which we have titled ‘Conversations with Carers’. The interviews quickly took the form of conversations, meandering journeys through long or short careers in care work, narratives which moved backwards and forwards in time, jumping from theme to theme. Whilst the participants were known to the authors beforehand, to protect those we interviewed and the homes they work(ed) in, we have anonymised names, dates and places in the pages that follow. So too in our autoethnographic reflections the names of care homes, colleagues and residents have been either anonymised or removed entirely. As Hannah’s care work experiences are still relatively recent, her reflections have been through a careful process of re-ordering and re-storying (Bochner and Ellis 2016, 253) to further guard the anonymity of colleagues, residents and care homes she worked in. The autoethnographic, textual and interview data were subjected to detailed thematic analysis (Guest et  al. 2012), adopting the constant

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comparison method (Glaser and Strauss 1967) to ensure analytic rigour. The autoethnographic and co-participatory nature of the approach in this book brings methodological richness to the study by allowing the emotional aspects of caring to form part of the analysis. The methods produced complex narratives of experience and provided a rich interface of meanings, feelings and understandings. Underpinned by the notions of ‘thinking with age’ (Jennings and Gardner 2012) and ‘reading with care’ (Ferris-Taylor et al. 2019) the sensitivity to ‘feeling age’ is also part of the research approach. There also existed an intergenerational dimension running through the research both as co-authors and in the interactions of staff with each other and those they care(d) for. To paraphrase Frank (2000), the methods employed in this short book mean we place ourselves on the methodological ‘line of fault’ (357) between experiential and academic analyses. On our fault line, we carry with us what might be thought of as ‘vocations of caring’—deep commitments to provide appropriate acts of caring that are based in understandings of the equalities and diversities of ageing as intersectional elements of individual identities. As a result, real experiences and reflections are placed in juxtaposition with media representations and also with current cultural and theoretical debates on age, caregiving and representation. The weaving of personal and emotional experiences into the study provides a new lens on the subject matter and an accessible way to engage with the complex ideas and issues that surround caring and being cared for in the British care home environment. Structure of the Book This book contains five chapters. Chapter 2 presents two autoethnographies of care which examine care work by drawing on complementary and contrasting experiences separated by nearly 20 years. The first autoethnography is written by Hannah Grist, an academic who worked as a care assistant for five years from 2010 to 2015. Hannah’s autoethnography explores her memories of care work in the culture of person-centred care and focuses the discussion of real care experiences in the modern moment. The second is written by Ros Jennings, now an academic and Professor of Ageing, Media and Culture, but who worked as a care assistant from 1989 to 1991. It explores her experiences of personally giving care and examines what it meant at that time to care and be cared for.

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We are mindful that the autoethnographies are not presented in chronological order, reflecting the non-linear progression of our journeys in and out of care work and the non-sequential life course perspectives employed in ageing studies. Hannah’s autoethnography comes first, situated in the culture of person-centred care, her experiences of care work were contemporary to several film and television representations of care work and to the Panorama documentary that we explore in Chap. 3. Ros’ autoethnography offers a contrasting perspective of care work done in the 1980s and 1990s, contemporary to the series Waiting for God (BBC 1990–1994) and to the experiences of several of the participants we interviewed for this project. Chapter 3 examines the principal ways that care workers caring for old people in UK care homes are represented in a range of media. Although not offering an exhaustive media scan, this chapter explores significant interventions and trends in the representation of UK care workers over the period pertinent to this book (1989–2019). The selected television and film representations are contrasted with a discussion of UK national newspaper headlines relating to care workers and the analysis of the BBC Panorama documentary Behind Closed Doors: Elderly Care Exposed (2014). We argue that the dominant mode of representation for care workers in the UK media is as ineffectual fools and/or monsters, and consequently the status and professional identity of care workers is diminished at a time when high-quality, compassionate and person-centred care for old people is needed more than ever. Chapter 4 brings together the themes identified in the earlier autoethnographies and media analysis chapters with the voices of current and former carers to further develop the intricate picture of care and care homes already offered in the book. This chapter draws on a series of semi-­ structured interviews with participants who have or continue to work as carers for older people in care homes. It explores the ways carers think about themselves, their roles and those they care for, and examines carers’ perceptions and responses to their representations in the British media. It offers a complex picture of what it means to be a care worker and highlights several important issues for the sector, including issues around training, notions of ‘good’ and ‘bad’ care, notions of resourcing and time to ‘do’ care, and one of the most problematic findings of this study—that current and former care assistants can rarely picture a future in which they reside in a care home themselves.

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The final chapter brings together the main arguments of the book and summarises the findings of the textual, autoethnographic and interview analyses. The conclusion highlights the contributions made to ageing studies and media studies. We argue that the experiences of current and former carers constitute ‘vocations of caring’—a wellspring of experience and a deep understanding of what it means to perform care work carried by current and former carers, which can powerfully shape public conceptions of both the care home and later life. The conclusion argues that it is time to ensure a better quality of care for older people in care homes in Britain, and that it is time to provide better support for those who ‘do’ care. For these crucial changes to take place we argue that the way carers and care homes are thought about and represented in news media and popular culture must urgently evolve.

References Allen, Katherine, and Fred P. Piercy. 2005. Feminist autoethnography. In Research Methods in Family Therapy, ed. Douglas H.  Sprenkle and Fred P.  Piercy, 155–169. New York: Guilford. Barusch, Amanda. 2013. The Aging Tsunami: Time for a New Metaphor? Journal of Gerontological Social Work 56 (3): 181–184. Bloodworth, James. 2018. Hired: Six Months Undercover in Low-Wage Britain. London: Atlantic Books. Bochner, Arthur P., and Carolyn Ellis. 2016. Evocative Autoethnography: Writing Lives and Telling Stories. Oxon: Routledge. Bone, Anna E., et  al. 2018. What Is the Impact of Population Ageing on the Future Provision of End-of-Life Care? Population-based Projections of Place of Death. Palliative Medicine 32 (2): 329–336. Bourdieu, Pierre. 1984. Distinction. London: Routledge. Boylorn, Robin M. 2008. As Seen on TV: An Autoethnographic Reflection on Race and Reality Television. Critical Studies in Media Communication 25 (4): 413–433. Byetheway, Bill. 1995. Ageism. Buckingham: Open University Press. Cancian, Francesca M., and Stacey J. Oliker. 2000. Caring and Gender. Walnut Creek: AltaMira Press. Chang, Heewong, et al. 2013. Collaborative autoethnography. Oxon: Routledge. Chivers, Sally. 2013. Seeing the Apricot: A Disability Perspective on Alzheimer’s in Lee Chang-dong’s Poetry. In Different Bodies: Essays on Disability in Film and Television, ed. Marja E. Mogk, 65–74. McFarland and Company: Jefferson.

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Chivers, Sally, and Ulla Kriebernegg, eds. 2017. Care Home Stories: Ageing, Disability, and Long-term Residential Care. Bielefeld: Transcript. Competition and Markets Authority. 2017. Care Homes Market Study: Summary of Final Report [online]. Available at: https://www.gov.uk/government/publications/care-homes-market-study-summary-of-final-report/ care-homes-market-study-summary-of-final-report Cruikshank, Margaret. 2009. Learning to Be Old: Gender, Culture, and Aging. New York: Rowman and Littlefield Publishers Inc. Dahl, Hanne Marlene. 2017. Struggles in (Elderly) Care: A Feminist View. Basingstoke: Palgrave Macmillan. Dalley, Adeline. 2014. Behind Those Care Home Doors: How to Avoid Care Professionals with Their Eyes Wide Shut. Gloucester: Action Publishing Technology Ltd. DeForge, Ryan, et al. 2011. Afraid to Care: Unable to Care: A Critical Ethnography Within A Long-Term Care Home. Journal of Aging Studies 25: 515–426. Department for Health and Social Care. 2013. The Cavendish Review: An Independent Review into Healthcare Assistants and Support Workers in the NHS and Social Care Settings [online]. Available at: https://assets.publishing. service.gov.uk/government/uploads/system/uploads/attachment_data/ file/236212/Cavendish_Review.pdf Diamond, Timothy. 1986. Social Policy and Everyday Life in Nursing Homes: A Critical Ethnography. Social Science and Medicine 23: 1287–1295. Downs, Murna. 2014. Excellence in Dementia Care: Research into Practice. Maidenhead: Open University Press. Ellis, Carolyn. 1995. Final Negotiations: A Story of Love, Loss, and Chronic Illness. Philadelphia: Temple University Press. Ellis, Carolyn, et  al. 2011. Autoethnography: An Overview. Forum: Qualitative Social Research 12 (1). Available at: http://nbn-resolving.de/ urn:nbn:de:0114-fqs1101108. Ettore, Elizabeth. 2017. Autoethnography as Feminist Method: Sensitising the Feminist ‘I’. Oxon: Routledge. Fairclough, Norman. 2003. Analysing Discourse: Textual Analysis for Social Research. Oxon: Routledge. Ferris-Taylor, Rita, Jane Grant, Hannah Grist, Ros Jennings, Rina Rosselson, and Sylvia Wiseman. 2019. Reading Film with Age Through Collaborative Autoethnography: Old Age and Care, Encounters with Amour (Haneke, 2012), Chronic (Franco, 2015) and A Woman’s Tale (Cox, 1991). Life Writing 16 (1): 69–95. Fossey, Jane, et al. 2006. Effect of enhanced psychosocial care on antipsychotic use in nursing home residents with severe dementia: Cluster randomised trial. British Medical Journal 332 (7544): 756–758.

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Frank, Arthur W. 2000. The Standpoint of Storyteller. Qualitative Health Research 10 (3): 354–365. Froggatt, Katherine, et  al. 2009. Understanding Care Homes: A Research and Development Perspective. London: Jessica Kingsley Publishers. Fürst, Helen. 2017. Growing Up in a Business Family – An Analytic Autoethnography of ‘Subtle Coerced Succession.’ DBA thesis, University of Gloucestershire. http://eprints.glos.ac.uk/5095/ Geertz, Clifford. 1973. The Interpretation of Cultures. London: Basic Books. Gilleard, Chris, and Paul Higgs. 2013. The fourth age and the concept of a ‘social imaginary’: A theoretical excursus. Journal of Aging Studies 27 (4): 368–376. Glaser, Barney G., and Anselm L. Strauss. 1967. The Discovery of Grounded Theory: Strategies for Qualitative Research. New York: Aldine De Gruyter. Goode, Belinda, and Gail Booth. 2012. Dementia Care: A Care Worker Handbook. London: Hatchette UK. Goudge, Mary V. 2004. Choosing a Care Home. Oxford: How To Books Ltd. Gubrium, Jaber F. 1975. Living and Dying at Murray Manor. New  York: St Martins. Guest, Greg, et al. 2012. Applied Thematic Analysis. Thousand Oaks: Sage. Gullette, Margaret Morganroth. 2004. Aged by Culture. Chicago/London: The University of Chicago Press. ———. 2017. Ending Ageism – Or How Not to Shoot Old People. New Brunswick: Rutgers University Press. Hafford-Letchfield, Trish. 2011. Social Care Management, Strategy and Business Planning. London: Jessica Kingsley Publishers. Hall, Stuart. 1980. Encoding/Decoding. In Culture, Media, Language, ed. Stuart Hall, Dorothy Hobson, Andrew Lowe, and Paul Willis, 128–138. London: Hutchinson. Harrington Meyer, Madonna. 2000. Care Work: Gender, Class, and the Welfare State. New York: Routledge. Henderson, J. Neil, and Maria D. Vesperi, eds. 1995. The Culture of Long-Term Care: Nursing Home Ethnography. Westport: Bergin and Garvey. Hurtley, Rosemary, and Julia Burton-Jones. 2008. Find the Right Care Home. London: Age Concern Books. Jennings, Ros, and Abigail Gardner, eds. 2012. Rock On!: Women, Ageing and Popular Music. Farnham: Ashgate. Katz, Stephen, and Toni Calasanti. 2014. Critical Perspectives on Successful Aging: Does It “Appeal More Than It Illuminates”? The Gerontologist 55 (1): 26–33. Katz, Stephen, and Barbara Marshall. 2003. New Sex for Old: Lifestyle, Consumerism, and the Ethics of Aging Well. Journal of Aging Studies 17 (1): 3–16. Lamb, Erin Gentry. 2015. Age and/as Disability: A Call for Conversation. Age, Culture Humanities 2: 313–322.

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Lawrence, Bill. 2017. When the Unacceptable Becomes the Norm: Choosing a Care Home in the 21st Century. Kibworth Beauchamp: Matador. Means, Robin, and Randall Smith. 1998. From Poor Law to Community Care: The Development of Welfare Services for Elderly People 1939–1971. Bristol: Policy Press. Miles, Matthew B and A. Michael Huberman, eds. 1994. Qualitative Data Analysis. Thousand Oakes: SAGE. Morley, John, et al. 2013. Nursing Home Care. New York: McGraw Hill Education. Mulley, Graham, Clive Bowman, Michael Boyd and Sarah Stowe. eds. 2014. The Care Home Handbook. Oxford: Wiley Blackwell. National Institute for Health Research. 2019. Understanding Care Homes [online]. Available at: https://enrich.nihr.ac.uk/page/understanding-care-homes Nazarko, Linda. 2002. Nursing in Care Homes. Oxford: Blackwell. Palmer, Liam. 2016. Management Development for Care & Nursing Home Managers. Raleigh: Lulu Press. Parry, Keith D. 2012. Game of Two Passions: A Football Fan’s Autoethnography. Qualitative Research Journal 12 (12): 238–250. Peace, Sheila M. 2003. The Development of Residential and Nursing Home Care in the United Kingdom. In End of Life in Care Homes: A Palliative Approach, ed. Jeanne Samson Katz and Sheila M.  Peace, 15–42. Oxford: Oxford University Press. Potter, W. James. 2012. Media Effects. London: SAGE. Rawles, Zoe. 2017. Essential Knowledge and Skills for Healthcare Assistants. Boca Raton: CRC Press. Reynolds, Jill, et al., eds. 2003. The Managing Care Reader. London: Routledge. Robertson, Ann. (1990). The Politics of Alzheimer’s Disease: A Case Study in Apocalyptic Demography. International Journal of Health Services 20 (3): 429–442. Rowe, John W., and Robert L.  Kahn. 1998. Successful Aging: The MacArthur Foundation Study. New York: Pantheon. Sandberg, Lynn, and Barbara Marshall. 2017. Queering Aging Futures. Societies 7 (21): 4–11. Seidman, Irving. 2006. Interviewing as Qualitative Research: A Guide for Researchers in Education and the Social Sciences. New  York: Teachers College Press. Skills for Care. 2018. The State of the Adult Social Care Sector and Workforce in England – September 2018 [online]. Available at: https://www.skillsforcare. org.uk/NMDS-SC-intelligence/Workforce-intelligence/documents/State-ofthe-adult-social-care-sector/The-state-of-the-adult-social-care-sector-andworkforce-2018.pdf Stafford, Philip B., ed. 2003. Gray Areas: Ethnographic Encounters with Nursing Home Culture. Oxford: James Currey Ltd.

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Toyosaki, Satoshi et al. 2009. Community autoethnography: Compiling the personal and resituating Whiteness. Critical Methodologies 9 (1): 56–83. Tronto, Joan C. 1994. Moral Boundaries: A Political Argument for an Ethic of Care. New York: Routledge. Twigg, Julia. 2004. The Body, Gender, and Age: Feminist Insights in Social Gerontology. Journal of Ageing Studies 18 (1): 59–73. Waite, Jonathan, et al. 2009. Dementia Care: A Practical Manual. Oxford: Oxford University Press. Zelizer, Barbie. 2008. Why memory’s work on journalism does not reflect journalism’s work on memory. Memory Studies 1 (1): 79–87. Zelizer, Barbie and Keren Tenenboim-Weinblatt, eds. 2014. Journalism and Memory. Basingstoke: Palgrave Macmillan.

CHAPTER 2

Autoethnographies of Care

Abstract  This chapter presents two autoethnographies of care which examine care work by drawing on complementary and contrasting experiences separated by nearly 20 years. The first autoethnography is written by Hannah Grist, an academic who worked as a care assistant for five years from 2010 to 2015. The second is written by Ros Jennings, now an academic and Professor of Ageing, Media and Culture, but who worked as a care assistant from 1987 to 1991. The autoethnographies explore issues surrounding training and role modelling, education and class, the lived impacts of media representations, and questions around time. Together these autoethnographies reveal the legacies, emotional and embodied, that we carry with us as a result of this work. Keywords  Autoethnography • Care work • Memory • Time • Affect

Introduction Deanna B. Shoemaker’s (2015, 521) notion of ‘sifting through memories’ in her work on autoethnographic journeys is one that has followed us throughout our own autoethnographic expedition for this book. The close reading of media texts that represent British care homes and care assistants and the conversations we had with carers stimulated memories and kindled thoughts of former colleagues, former care homes, their residents and their families. The research process aroused recollections of © The Author(s) 2020 H. Grist, R. Jennings, Carers, Care Homes and the British Media, https://doi.org/10.1007/978-3-030-35768-9_2

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situations infused with fondness and pride, and evoked others that were ‘messy, bloody, [and] unruly’, as Tami Spry (2016, 15) has described. It has been an emotional and affective process, then, to sift through, like a prospector with a pan, thinking carefully about which memories to include in our autoethnographies and which to tuck away, to think on some more and return to at another time. After all, as Anne-Marie Deitering (2017) reminds us, autoethnographies are never really finished (16–18). And so, in what follows, we have focused on those recollections of our time in care work that have never been far from our minds, and on others which were forced to the fore through the process of doing this kind of research. Our purpose in the pages that follow is to share these personal experiences of care work to add depth, texture and a unique perspective to augment the narrative themes which thread through the following chapters.

Hannah’s Autoethnography The Interview and Getting into Care, or ‘Hold these, love’ I was a care assistant for six years in my early twenties whilst I completed my undergraduate and postgraduate studies. To fund my education, working in a local nursing home provided a consistent income and flexible hours, and built on my experiences of informal caregiving at home. My parents had both worked as care assistants whilst I was growing up. My mother did night shifts and my father did days in the same nursing home. I remember being bundled up in blankets and strapped into the car with my younger brother, waiting in the care home carpark for the ‘other’ parent, to swap over and bring us home again whilst the other started their 12-hour shift. At the time, I never really asked my parents what their work was like. By the time I was 14 my mother had been disabled out of work, and my father had moved out of care work into a role in the NHS, specialising in mental health. When I started my work as a care assistant, I was idealistic and naïve. I thought I would help make cups of tea and keep older people company whilst they watched television or completed a jigsaw puzzle. These were activities I was already keen on myself—a keen watcher of TV and an avid puzzler, I felt ready to support residents to engage in activities like these. I knew many of the residents in this home had dementia, but I had never known anyone with the condition and was drastically underprepared for

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my first encounters. I was guilty of holding an image in my mind of the care home, care work and care home residents that simply did not match real life, and it became quickly apparent that I was not prepared for life, work and death in a care home. I don’t think I ever completed a jigsaw puzzle or spent any time watching television with any of the residents I cared for. I started as a Health Care Assistant (HCA) at a nursing home close to home after an introduction to the manager by a friend. This was not a purpose-built nursing home, rather a converted Victorian mansion replete with extensions and modifications to make it suitable for providing care for older people with a variety of conditions, principally those with severe dementia. When I walked into the home for the very first time for an interview, the smell of urine and cheap air freshener burnt my nose and throat as the door closed and locked automatically behind me (and here, the Foucauldian parallels to prison spaces were not lost to me.) I was told to take a seat in the reception area, by the voice at the other end of the intercom. No staff to be seen, I was instead greeted by an elderly gentleman who was sitting in the reception area, quietly counting unseen objects out of his pocket and onto the table. He looked up briefly when I arrived and quickly resumed his counting. I took the plastic-covered seat next to him, patiently waiting to be called into the interview room. The gentleman looked over at me and, ever so quietly, asked me to, ‘Hold these, love.’ I held out my hand as he gently placed three unseen objects onto my open palm, carefully enunciating, ‘One, two, three’, as he went. ‘Look after them, mind’, he commanded, in a thick accent. ‘Of course’, I replied, safely tucking the ‘things’ into my own pocket and giving him a smile. What were those objects he was so carefully counting out, and entrusting to me? It would not be long before I found out more about this gentleman, and his 39 fellow residents, as I was offered the job on the spot. I started work the following week. Washing, Dressing, Shaving, or the Importance of Being on Time for Breakfast Before my first shift, I was given an induction which included a fire-safety demonstration, where I was introduced to my co-workers and shown around the home. I was shown how to operate the electric beds and how to access the call bell system, and which combination of buttons I should

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press should I encounter an emergency. I was given some Moving and Handling Training, where I was shown how to use the hoist, mechanised stand aids, slide sheets and boards, and electric bath chairs. I was shown how to roll someone in bed, working in tandem with another carer. Another carer explained to me the different types of continence aids used by residents in the home—absorbent bed sheets, pull-ups, pad inserts with different absorbencies, catheters, colostomy bags, commodes and bedpans—and introduced me to a term that I quickly grew to detest: residents who were ‘self-toileters’. I was shown how to assist a resident from a wheelchair into an arm chair using a banana board and was repeatedly reminded that ‘drag lifting’ residents was unsafe and against company policy. At that point I had no idea what the difference was between a bed pan or a commode, what the difference was between a ‘hoist’ and a ‘stand aid’, nor what drag lifting even looked like. Drag lifting, it quickly emerged, is when a resident is lifted under the arms by a care assistant on each side, which can cause damage to the resident’s shoulders and hips and can also cause the carer to hurt their back. I was given a work-book which covered topics like hydration and nutrition and told to share my progress through the book with my mentor—another care assistant who had been in the role for two years. On my first day I was paired up with another carer and sent to my floor to begin getting residents out of bed, washed, dressed and ready for their day. I was sent in to give care to an elderly gentleman, who was lying in bed, awake but non-verbal, and absolutely covered in faeces. I stood there wondering how on earth I should begin to help him get ready for his day, and how I was going to help him get clean. The smell of faeces was turning my stomach and making my eyes water, as I tried to avoid breathing through my nose and instead taking shallow breaths through my mouth. My co-worker had directed me to his bedroom and instructed me to start helping him get washed and dressed, promising she would be back soon. She had disappeared to answer a call bell, the sign that another resident on our allocated floor needed some assistance. Standing in the bedroom waiting for my co-worker, I felt a real sense of pressure to get started and growing anxiety. Not only was this man clearly in need of help, covered in faeces and lying at an uncomfortable angle in bed, his long, thin legs pushed through the bars on the bedside; but I recalled my induction, where we were told that everyone needed to be washed, dressed and in the dining room, or sat up clean and comfortable in bed by 8.30 am when breakfast would begin. Donning rubber gloves

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and a plastic apron, I gently touched his shoulder and asked him if he was ready to get up. He didn’t reply, though he made eye contact and grinned a little. I decided to run the taps on the bath, which began to fill with warm soapy water, and looked into his wardrobe for something to wear. He didn’t respond when I showed him various combinations of shirt and trousers, jogging bottoms and t-shirts. I settled on a striped shirt and a pair of black trousers, carefully laying it out on the dresser, alongside a pair of socks, underpants and vest. The choice of clothing made, I was faced with my next decision. How to help this man get washed and dressed? I didn’t know if he could stand on his own or if he needed hoisting, and (regardless of the faeces all over the bed) I couldn’t tell if he needed a continence product during the day or if he was able to use the bathroom unassisted. My anxiety grew. I was worried that I would be told off for not having made any progress, but at the same time not at all sure where to begin. I decided to fill a plastic bowl with warm water from the bath, and gently and carefully set about removing his soiled pyjamas, all the while loudly stating what I was doing in as calm and reassuring a voice as I could muster. He lifted his leg when I first pulled at the hem of his pyjama bottoms, an unspoken agreement that I should continue to help him out of the dirty clothes. Between us, we wriggled, rolled, tugged, pulled, unbuttoned and untangled, until he was finally free of the soiled pyjamas. The gentleman remained silent throughout, though he made eye contact with me and smiled several times. I chattered incessantly throughout. It must have taken a good 20 minutes just to remove his pyjamas. I covered his naked lower half with a fresh towel, with huge embarrassment on my part having realised I would soon need to wash him down below. I had never washed a stranger, nor seen the bare body of a 90-year-old man before that moment. Just as I began gently washing his face with a soapy flannel, my co-worker arrived in the room. ‘What is taking you so long? Oh, God, he’s covered in shit again. Every morning! You always do this, don’t you, my love? You always go “digging”! You’re going to be late to breakfast, now!’ Whilst the gentleman gave my co-worker a little grin (the same grin he had been giving me all morning), I was uneasy with the gentle chastisement he received for pulling his soiled pad out of his pyjama bottoms. I learned, over time, that these chastisements were plentiful, in all the different homes I worked at over the years. Residents were often ‘told off’ for making a mess with faeces, for removing their continence products or

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for exhibiting ‘challenging’ or ‘difficult’ behaviours (another term I grew to dislike intensely). Eventually, we managed to wash the gentleman from top to toe in bed, cleansing every inch of his body of faeces, and I even gave him a shave, with him lying right there in bed—the first time I had ever shaved anyone. I was terrified that the orange Bic razor would slip and cut him, but miraculously I managed to give a smooth shave with no incidents. Antiseptic creams were applied to his sore red bottom, a large cotton incontinence pad was pulled between his legs, barrier cream was applied to his legs, and we dressed him together in the shirt and trousers I had picked out. A bright blue sling was then wrapped around his body, attached to the hoist, and he was lifted from the bed into a wheelchair, where he was wheeled into the main dining room for breakfast. He wasn’t too late, after all. The day continued in much the same manner—once one resident was positioned in the dining room for their breakfast, I went to the next bedroom along the corridor and began to assist another resident to get washed and dressed. Sometimes I was accompanied by the co-worker I had been paired up with. More often, I was on my own, working hard to figure out how much or how little help the resident needed, and how best I could provide it. My co-worker was often in the next room down, doing much the same thing with the occupant of that room. We would come back together to wrap the sling around the resident and to operate the hoist, and then it would be back to working on our own—each working as quickly as possible to get the resident ready in time for their breakfast. Once everyone on our floor was washed, dressed or made comfortable for breakfast, we then set about assisting the residents with their meals—feeding those who needed help to eat and drink, and encouraging those who needed a bit of support to feed themselves. My shift finished at 2 pm, and I had spent most of my time running from room to room, working out how best to wash, dress or change people to ready them for mealtimes. I was surprised about the way in which the whole home seemed to operate around mealtimes and around the needs of the kitchen, rather than the needs of individual residents, and how much pressure this put on my co-workers to see to basic personal care needs over all else. I cried all the way home from work that afternoon. It was not what I had imagined. Whilst a part of me knew that personal care would involve washing body parts I had not encountered before, that part of the role would involve dealing with bodily fluids, with assisting people to eat and

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drink, I was crushed by how little time I spent actually talking to residents. My perception of the care home and of older people was deeply shaken by the lived reality of dementia and dementia care. These were not ‘forgetful’ grandparents—those I spent time with at this home were dependent, their personhood seemed to be stripped away by disease and institutionalisation. I was confronted with my own naivety, with how little I really understood about life in a care home, and confronted with thoughts about mortality, dependency and my own place on the life course. Care Home Role Models, or Not All Heroes Wear Capes Learning how to do care work, when I started, was all about hands-on experience. I went home after my first day with my work-book, and, ever the good student, I diligently read it from cover to cover. At that point I didn’t know the difference between a catheter and a colostomy, or what dementia really was. I didn’t know how I was supposed to care for residents—whether I was allowed to give someone a hug if they seemed upset, or if I was permitted to use their first names. The book didn’t really help me, at all. I quickly discovered that to learn in the care home is to get your hands dirty, to observe via shadowing and to emulate the movements and behaviours of more experienced colleagues. When we were not short-staffed and I was required to work semi-independently, I stuck closely to the carer I was paired with. I soon learnt which residents liked to be called by their first names and which did not, who needed a hoist and who required a stand aid, and what the difference between continence products were. I found out that one of the home policies was to avoid being over-familiar with the residents, that hugging was not permitted, and that we shouldn’t use terms of endearment such as ‘Love’ or ‘Sweetheart’. Even quicker I found out these were rules that established carers largely ignored. Many carers spoke to the residents very casually and even lovingly, hugs were plentiful, and many called residents by their first names or nicknames bestowed within the home (e.g. ‘Postie’ or ‘Nanna’). The semi-rurality of the care homes I worked in meant regional accents and colloquial terms were the norm—‘My love’, for example, was a common way to refer to anyone, old or young. It was hard to get to grips with it all—some rules, it seemed, were there to be broken, whereas other ‘golden rules’ were stuck to absolutely rigidly, such as moving and handling residents in pairs and using the correct

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equipment. In those early days, each shift involved trying to figure out how carers interpreted and worked within or around home policies. Just as I thought I understood these unspoken rules and felt ready to find my own way through them, I was plunged once again into confusion when paired with a colleague who interpreted the policies differently. It seemed that certain carers (thankfully, very few) would completely disregard even the golden rules. Moving residents on their own. Rushing people through their meals. Not speaking to residents as they provided personal care. Ignoring cries for help, or an outstretched hand in need of a squeeze. When I challenged them, they told me there wasn’t time for all that. Just get on, Hannah. There were some who treated the long corridors like a production line. Get in, mechanically perform personal care tasks, get out. This made me increasingly uncomfortable and anxious. I reported what I saw to senior colleagues and to the nurses, who dealt with the issues in their own way. A conversation. A reprimand. A reminder of home policy. Occasionally someone would lose their job. I didn’t win any favours with those carers. When I reported bad practice or highlighted a concern, some isolated me, called me a ‘whistle-­ blower’ or a rat. I was in my early twenties. I was out of my element and afraid. I wanted to make sure I was doing the right thing for those in my care, but I also wanted to be part of the team. To get along. I quickly found that most of the carers were doing the same thing—reporting poor practice and challenging bad behaviour. These colleagues supported me entirely, building my confidence and emboldening me to speak out against things I felt uncomfortable with. They taught me I should speak for residents who couldn’t raise their own voices. That my purpose was, above all else, to care. These were the colleagues I wanted to be paired with each shift. I wanted to work alongside those I felt I could emulate, those who carried out the work with confidence, patience, humour and compassion. These were carers who sometimes broke the rules around over-familiarity, but were ones who did their best to maintain the dignity and safety for those in their care at all times. They were the ones who stayed on after their shift had finished to offer an extra cup of tea. The ones who brought in nightdresses, pyjamas and toiletries from home to give to residents without. The ones who took their time washing and dressing, chatting softly about their own families or reminding residents of theirs. The ones who simply smiled if they were told off for taking too long. The ones who joined me in the ‘office’ to report unsettling behaviour or poor attitudes.

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The ones who told me about the residents’ histories, showed me their care plans and helped me understand the progression of their illnesses. The ones who cried when residents died. Those were the ones I wanted to be like. Some were older than me, some were younger. Some started care work before me and some after. Some were male and many more were female. Some were English, others were not. These were the carers who shaped me the most, influencing the kind of carer I was and aspired to be, and affecting my personal identity. No training or work-book ever taught me as much as my care home role models. The Challenge of Being Myself Throughout my time in the care homes I worked in my colleagues asked me questions about my studies. When I started in care I had completed a BA at a university in the Midlands and was enrolled on an MA programme in Bristol, the nearest large city to my family home. They knew I wasn’t studying Health and Social Care or anything to do with nursing. So, why did I want to work in the nursing home, if I had all that education, they asked. Couldn’t I find a better job? Did I want to become a manager? I didn’t know the answers to their questions, other than that care work provided a steady income and a flexible schedule I could fit in around my studies. I knew that I found care work rewarding and interesting, but I didn’t know if I wanted to continue working in care after I finished my studies. I didn’t know if I wanted to work towards becoming a care home manager or if I wanted a career in another industry. I didn’t know what care work was, could be or should be for the longest time, and their questions about my education made me feel different. I had to work hard to win the confidence of my colleagues, who seemed to find my educational background confusing and, perhaps, confronting. My colleagues had largely entered care work straight from secondary school or later in life, after having children. Despite being from the same socio-economic background, I felt I needed to work harder to embed myself in the working-class culture of the home, to show those I worked alongside that my qualifications made no difference to how I practiced care. In the final home I worked in I decided not to tell anyone that I had received my doctorate, instead using my experience of full-time care work as the passport to legitimacy that I so craved in my earliest care roles.

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Reflections on Watching Panorama I don’t think I have ever seen a documentary that has portrayed care assistants in a positive light. And I’ve been looking out for them. I remember watching the Panorama documentary Undercover: Elderly Care Exposed with a pit in my stomach and a lump in my throat. When it first aired on television in 2014, I don’t think I managed to watch it to the end. Sitting in my lounge with my hands across my eyes, I was worried that I would recognise the types of care assistant represented in this programme. Anxious that I would recognise the vulnerability of the residents. I knew the home I worked in wasn’t perfect. That there were some carers I didn’t like to be paired with because of the way they rushed, or the way they spoke to, the residents. I was overwhelmed by the documentary and totally appalled at what I saw. I was furious about the way those carers treated the residents under their care. Sickened by the way they spoke to them. Frustrated that a daughter had to plant a hidden camera for the abuse of her mother to be recognised and addressed. My gut twisted as I recognised the cries for help that went ignored, and the roughness. I recognised the almost mechanical way in which residents were washed, rolled and dressed. I recognised some of the language and the moving and handling ‘techniques’ used. Sick to my stomach, I tried to comfort myself with thoughts of those I worked alongside who never, ever worked in such a way. I reminded myself that whilst I recognised some of this practice, it was very rare. I had never seen anything so cruel, so vicious or abusive in any of the homes that I worked in. I was nervous to go back to work the next day. I promised myself that I would challenge every instance of poor practice I witnessed from that day on. That I didn’t care whether reporting carers to the nurses or managers would isolate or blacklist me. The anxieties I had felt about reporting poor practice and the resulting backlash from those I had reported ebbed away, replaced by an urgency to do better. Whilst worries about reporting colleagues disappeared in the aftermath of watching Panorama, I was worried for myself in another way. Was I being filmed? Watched? Observed? Did our home have cameras tucked away inside an alarm clock or hidden inside a stuffed toy? Were the families of the residents under my care concerned about their treatment? Was the care I delivered up to standard? Maybe I was rushing the resident? Was I always giving the best care I possibly could? Was I sticking to all the home’s policies? Would a hug be

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construed as sexual abuse? Might leaving someone on a bed pan for a few minutes too long, when I was rushed off my feet, be seen as physical or emotional abuse? I debated every action and doubted myself constantly. In the weeks and months that followed I felt that we were no longer trusted, that everyone suspected we were all as bad as those cruel carers we saw on screen and that it was only a matter of time before we were ‘found out’. I knew that I would never abuse residents, and I knew that the vast majority of those I worked alongside were committed, honest and caring. I felt the actions of a few twisted individuals had tarnished our reputation immeasurably. I was angry that care had become equated with cruelty in the popular imagination, obscuring the kindness, sensitivity and selflessness I had witnessed every day in my work. Leaving Care Work I left my job as a care assistant when I finished my PhD and gained employment at a university. I was relieved to leave the care home and to find a job that relied less on my physical and emotional resilience. The legacy of documentary exposés and relentless media coverage of care as cruelty was painful, a pain shared by those I worked alongside. Physically exhausted, too, my twinging sciatic nerve still today offers a regular reminder of my years as a carer. I was ready to leave. When I decided to take a job at a university, I remembered those early conversations with my colleagues. The times they asked me whether or not I would stay in the role once I had ‘all those fancy qualifications’. When they asked me why I was ‘doing’ care at all. Perhaps due to my insatiable desire for learning and education, once I finished my doctorate, I did contemplate undertaking more training to become a care home manager or senior care assistant. Even now, at times when academia is challenging, I often find myself wondering what my life would have been like had I stayed in care work, or wondering whether or not I might go back to it. I miss the work a great deal. I miss the camaraderie of working within a small team of (mainly) women, and I miss the feeling of having made a small difference to people’s lives. I regret my time in care, too. I regret not spending more time with residents and succumbing to pressures to ‘get on’. I regret not doing more to challenge the structures that limited our ability to offer truly person-centred care. I regret not shouting from the rooftops that good care vastly outweighed any bad practice I ever

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experienced, that carers are wonderful people, trying their best to make a difference under incredibly difficult circumstances. At the risk of sounding clichéd, I very much believe that care work has made me the person I am today. My passion for exposing the pervasive ageism that structures our society led me to co-direct the Centre for Women, Ageing and Media, has shaped my professional life and was the starting-off point for this book. My memories of my time as a carer structured my personal life and informed the way I navigated choosing a care home for an elderly uncle. I drew upon my experiences as a carer in interrogating Care Quality Commission (CQC) reports, conducting unannounced visits to prospective homes and asking questions of managers and care staff. My experience as a carer has helped me understand the frustrations and challenges faced by the carers and nurses who work within my uncle’s care home and the issues my uncle faces as a recipient of care, and has assisted in negotiating our expectations of the home as family members. Should I ever need it, could I see myself living in a care home? I would love to say, ‘Yes’, but I am sure that would not be truthful. Honestly, no, I do not see myself spending my last days in a care home. The standard of care that I saw and participated in within the care homes I worked at was variable. Receiving good care all too often depends on decent staffing levels, the goodwill of care staff and, ultimately, which carer is allocated to your room. I might be lucky and end up in a home that is well-staffed with carers like my role models and that is totally committed to a culture of person-centred care. Or, as is the case with so many, I could end up in a home short-staffed with under-paid, under-trained and under-valued carers, doing their best to meet basic care needs, with time for very little else. For me to contemplate life in a care home in my old age, something drastic in the way care work is valued by society would need to change. Until then, no matter the consequence, you will find me in my own home with one eye on the television and another on my jigsaw puzzle.

Ros’ Autoethnography Suited to Caring? I found a hippy dress I had worn when I was very pregnant. It covered the tattoos on my upper arm and shoulder. I didn’t have any tights; I hadn’t worn them since I left school and I didn’t have any women’s shoes. I dug out a pair of equally hippy leather toe hold sandals that I bought in an

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Oxfam shop, combed my pink Mohican hair cut flat and put in my smallest nose pin to keep my hole open. I stood on the first step of the imposing building and wondered what the hell I was doing and what they would make of this unconventional who was doing as much as she could to make a reasonable first impression. A friend of mine who was studying for her MA in a nearby university was a qualified nurse and worked as bank staff doing night shifts at a range of nursing homes in the area. She had been the one to suggest looking for a job as a care assistant. She thought I would be good at it and could fit it in around my studies and family life. I had no direct experience of what a care home was actually like. Perhaps some images from television, but I’m not even certain of that now at this point in time as I reflect back. I did know what personal care entailed though and old people’s bodies were not going to be too much of a shock for me. My childhood and teenage years were full of older people. My father was 50 when I was born. My mother died when I was two and my father’s 75-year-old mother and one of his younger sisters came to look after us. Two years after they arrived my grandma had a stroke and lost the use of her legs and she also became incontinent. My aunt and my father looked after her and me. There was a commode in the living room and one in my grandma’s bedroom. There were rubber sheets on the bed and a daily routine of sheets and soiled underwear in the washing machine. Every morning before he went to work my father carried his mother downstairs, and every night when he came home from the evening dinner service at the hotel where he was head chef, he carried her upstairs and put her to bed. My job was to brush her silver white hair with an ornate silver-handled brush. She spoke to me in French and told me stories about when my father was a little boy in France and when she lived in Paris before the First World War. She gradually began to forget things, to become frightened and confused. She began to rant at my aunt as she tried to care for her. I didn’t know until much later that she had developed dementia. Two years later my aunt was operated on for an obstructed bowel and had a colostomy and stoma bag fitted. My father’s two youngest sisters who both lived about 20 miles away took turns to look after me and my grandma while their sister was in hospital. After some weeks my aunt came home from hospital but she did not live long. Up to that point her sister/ my aunts took turns caring for her too. I remember the smell of the stoma bag, I remember her becoming weak and delirious before returning to

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hospital not to come back; I learnt many years later that their grandmother had also lived with them during their childhood following a stroke. There was a rota of paid carers who came in to see to my grandma when my dad was at work five-and-a-half days a week. My aunts took turns coming over one day a week and I loved it when they were there. The carers were generally kind to me, but I always felt they had their hands full with my grandma and I learnt to be quite self-sufficient. I spent a lot of time reading in my room and learning to play the guitar. My grandma died when I was seven. Rather than get anymore carers in I went to the hotel with my father in the evenings and Saturdays. In the school holidays I stayed with my mother’s family in Scotland, and in the long summer holidays I went to my father’s family in France. My interaction was with people over the age of 50. My father’s uncle was about 85 when I first got to know him. He taught me to play boules and to fish, and sang me French music hall songs. I saw the advert in the local paper. Care assistant for a small residential old people’s home—no experience needed—training provided. I rang up and was asked to come along for an interview the next day. I was let into the home by a cheery woman who seemed to me to be in her mid-forties wearing a white uniform. There was a strong smell of air freshener in the entrance hall and a faint trace of urine in the air. I was expecting all sorts of questions about why I wanted to do the work, but basically, I was asked which nights I was able to work and when I could start. I was given a tour round and was told what my basic night duties would be and that I could start the next night. Training: What Training? My induction to the home and the routine was for me to go around with the matron who had interviewed me until she went to bed at around 11 pm. I was then on my own until she joined me to start the breakfast routine at 7  am. She was on call for emergencies, but told me she had never yet been called on, so I felt that it would be looked on badly if I did call her. She went through how to fill in the very basic daily log to share information about tasks done and any concerns. We bathed and made a couple of residents ready for bed, and I was shown how to turn residents who needed to be watched for bedsores on my own and how to support people in and out of chairs and on and off toilets and commodes. Six months before I left I was given two days of St John’s Ambulance first aid training in order to gain a first aid certificate.

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Doing Dirty Work Urine, faeces and fungal infections were common smells that I tried to ignore or baulked at but dealt with on my own on nightshifts while trying not to betray how I was feeling to whoever had produced them. The shame and embarrassment I had witnessed my aunt feel about the smells associated with dealing with her stoma bag were still vivid for me more than 20 years afterwards. The knowledge that she felt that shame even though, or perhaps because, it impacted on those she loved always guided me. Soaps and scent in the intimate bodywork of bathing were also part of the olfactory experience, as were cocoa, warm milk and Ovaltine, and toast and marmalade that I made for myself and hungry residents at who were awake in the early hours of the morning. I remember cleaning faeces off a pair of false teeth of one of the residents while she beamed toothlessly at me from the commode I had just lifted her on to, and I wondered how I was going to fit in giving her a shower and still attend to other bells on my own. One morning about an hour before the day staff were due to arrive, I literally walked into a room covered in faeces. The room belonged to the only married couple we ever had in the home while I worked there and we were not allowed to enter the room during the night without being requested by the bell. When the bell rang, I went and knocked on the door, and with no response, gently opened up the door into a completely dark room—curtains closed and no lights on but my nostrils were assaulted by the foulest smell of faeces I had ever (or since) encountered. Stepping in to find the light switch I almost slipped over as my foot stepped into a liquid pool of diarrhoea on the cushion floor linoleum. When the light came on I could see other pools of diarrhoea that were trailed round the room, with footprints indicating a path between the en-suite bathroom and the bed. The husband was sat crying on the bed repeating sorry over and over again. Diarrhoea soaked sheets were on the floor and so was his wife. They had tried to cope with a violent gastrointestinal episode on their own and they were both exhausted, ashamed and obviously in discomfort and pain. While trying to reassure and comfort and work out what the hell I had to do first to start making things OK for them, I had to swallow down my own vomit that had come up into my throat.

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The Effects/Affects of Time I worked only at night for about six months and then the matron was sacked after some sort of dispute with the owner that was never disclosed. A few weeks later, several of the staff left and followed her to the new home where she started working. It all happened very quickly and the first I really knew (I was quite isolated from the gossip and the politics of the home by working at night) was when the owner phoned me during the Friday night shift and asked me if I could stay on for a few extra hours the next morning until she could find somebody to come in besides herself. It would also really help if I could do the 12-hour day shift on the Sunday. I welcomed the money but also couldn’t bear to think of the residents that I had come to know well being left in discomfort or distress. I therefore did a 16-hour night shift, went home and slept until 6 pm, got up for dinner with the family, went to bed and was back in again for 8 am the next morning and worked until 4  pm. From then on, I worked Sunday day shifts until I left. I had support from my partner, now wife, who had also started to work as a home care worker for old people one night a week (when I wasn’t doing my own night shift), and a few months later, she joined me on Sunday day shifts while my daughter was looked after by her father. And so, I quickly found myself on a treadmill that consisted of university and studying, care home work, parental and household duties, and the wish to still try to have enjoyable times with family and friends. Looking back, I now realise that I thought that I was invincible and I could keep up this cycle of work despite sleep deprivation, and heaven knows I do need sleep. I have always needed sleep. Ten-hour sleep was always (and still is) my preferred amount of sleep, but on some nights, I only managed to grab two or three hours between ending a nightshift and going to university. I needed time to sleep, I needed time to study, time to be with my daughter and partner, with friends. There was too little time to have a life and outside the care home; time seemed to go so fast. Inside the care home on day shifts there was never enough time either. There was never enough time to do the practical tasks set out for us and still have time to spend time listening and talking with residents. The matron and management made it only too clear that getting people washed and dressed and down to the lounges or dining room had to run like clockwork. At night the pace was different and I much preferred the contact and rapport that I was able to build with the residents, which was just impossible in the day time. That notwithstanding, because I was longing for

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sleep and to be tucked up in bed myself, the nights went by so slowly and took a big toll on my health at the time and, as I came to realise, also on my health since. The years I spent as a care worker disrupted my metabolism. I felt constantly hungry but also felt nauseous much of the time. At work I lived on tea, toast and marmalade and cereal. These were the foods that were easily accessible and also quick to make and eat between rounds and tasks. I craved carbs all the time, which had not previously been the case. When I was at home it was the same. I craved pasta and cheese and in bigger and bigger amounts. I put on four stone in weight, which has been nearly impossible to shift since. Each night shift, between 3 and 6 o’clock in the morning, I went through a period of feeling nauseous and shaky, as if I had flu. My night routine was broken down into timed activities. Each hour I had to do a full check of all floors. I had to walk up three flights of stairs, go around each floor and listen for any sounds indicating distress or that I was needed and would pop in and try to solve any situations I encountered. These ranged from night terrors to changing pads, washing, drying and applying cream to anyone whose incontinence pads had failed or moved. I then had to take wet bedding down a further floor to the basement, where the laundry was. There were some residents who needed turning every couple of hours to prevent bed sores and there were others who needed morphine pumps checking or catheters and urine bags seeing to. After each hourly round I wrote in the night log and then attended to the pile of ironing that I was required to do each night. I was not good at ironing and resented it. It came last in my priorities, and if I didn’t finish it because I had seriously ill and dying residents to tend to, it didn’t worry me. I didn’t realise until I worked with other carers on the Sunday day shift that it added to the work of those doing day shift tasks. In between the rounds, bells would always go off. Sometimes they were for me to assist with going to the toilet or a commode, sometimes it was just to talk to someone when they were lying awake and unable to sleep. Despite these tasks the nights felt interminable because I just wanted to get to bed myself. I didn’t seem to get a second wind until it was nearly time to go home. By comparison, when I worked day shifts, they just zipped by. From 6 o’clock in the morning I was expected to get as many of the residents, who were lying in bed with wet and soiled pads up, washed and dressed and in their chairs or wheel chairs for their breakfast. I did it one by one and dashed off to make them cereal, tea and toast once they were settled out of bed. If they didn’t want to get up I just made them

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comfortable and left them. When we did the handover at 8 am and I told the day staff, their faces always fell. One Friday night when I was asked once more to stay on until Saturday lunchtime, I was so tired that I got in my car to go home and could not think how to start the car for at least ten minutes. I was the only person who seemed to stick at night shifts. Other people came for a few weeks and left. Apart from me, nights were often covered by different agency staff. It was only when I stopped night shifts and started teaching in higher education did I realise how fucked up I was from the cumulative tiredness and weight of responsibility I used to bear on my own each night. The physical toll was manifest in swollen legs and an increasingly injured back and shoulder. I was on high doses of anti-­ inflammatories. One day I went swimming and I realised that I was veering off to the left all the time as I couldn’t use my right shoulder and arm with as much power as my left. This was because in what was demarcated as a residential home rather than a nursing home, there were no hoists to help with lifting except over baths to help with bathing. The technique was to hook your arm under the shoulder of the resident to move them. At night I was doing this on my own, over and over again. By the time I entered my fourth year of doing this work I was really unhappy and even the management of the home remarked that I wasn’t my usual cheery self. By this point in time, I was beginning to dislike myself too. I was becoming less tolerant and I had a short fuse. I was angry at work. I was angry at home and depressed, and I was building up layers of trauma as tired and vulnerable I begged doctors in the middle of the night to come out to check the morphine dose of dying women who were writhing and crying out in pain. I was living in a liminal world, but actually I was just existing and not living; however, I was determined to put up with it until I finished my master’s degree as the work brought in the money we so needed. Living a Double Life The building I worked in and that had been converted into the residential care home had once been someone’s grand house. The sort of house that would have required servants and cooks to support the wealthy Victorian upper middle-class lifestyle it dated from. The residents I cared for were also from well-to-do middle-class backgrounds (headmistresses, wives of local businessmen who had masonic connections, wives of bank managers

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or women who had run their own retail businesses etc.). They had interests such as playing golf, theatre and opera. My multi-cultural background, my ability to speak French and German, a love and knowledge of all kinds of music (including classical and opera) meant that when there were opportunities to talk, I was able to have meaningful conversations with the residents, who wanted to talk about their lives and interests. I was constantly aware of how different I was from the other staff I came into contact with. My move from a working-class background through to grammar school education, a BA degree and then moving on to an MA set me apart in the way I talked, the cultural capital I could draw on and my understanding of the habitus of the majority of the residents. I quickly learned to curb my vocabulary and essentially dumb down or less I was subject to snide remarks. Also, as an active feminist and having been part of the local women’s group since I was 17, I had to bite my tongue at many of the residents’ attitudes about men and women. This was the time of peak Thatcherism and I had to keep my views about her quiet from many of the staff and residents. My appearance caused me more hassle from the other carers rather than from the residents. The residents would ask me questions about my hair (sometimes bleached blonde, sometimes jet black, sometimes purple), my tattoos and pierced nose and the three earrings in my left ear. They generally responded with a ‘good for you love!’ Overall, though, I struggled with not being able to be open about my sexuality. Homophobia was rife in society and in the media. The news headlines were of HIV and AIDS and Clause 28 legislation about not ‘promoting homosexuality’ in local authorities or schools. This was the media context to my working life. In addition to being closeted for the first time since I was 17, I was having an identity crisis. As a masculine woman who does not identify with dresses and feminine clothes, I was forced to wear a uniform dress and tights (my requests to wear trousers as more functional for the work was turned down as not in keeping with the home’s image). Each morning I could not wait to throw my stinking sweaty nylon uniform tights and underwear in the washing machine. Not being myself added a further toll to the emotional load I was under and that was further compounded by tiredness that I constantly felt. One of the most traumatic incidents that made me come face to face with what my own old age might be like was when I was given the job one Sunday of spring cleaning a resident’s room. I took down a suitcase from on top of the wardrobe to dust and found it full of photos of the resident. Iris

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(not her real name) had vascular dementia and had lost the use of her legs. She spent most days sitting in her room with the radio on because she upset the other residents with her agitated behaviour, swearing and the smells from her double incontinence. She always wore crimplene dresses in pastel shades or with loud patterns, and she had repeated fungal infections under her bust and under her arms because the material didn’t breathe. I never saw her have any visitors, but she was sent cards and flowers from a nephew from time to time. Many of the photos were of Iris and what I saw was a kindred spirit. None of the photos showed her in a dress. She wore men’s clothes, and in her younger years, like me, she rode a motorbike. There was also one woman who recurred in photos with her leaning affectionately against her shoulder or with a light touch on her arm—a lover, a partner? The prospect of not only working in drag but being put in a crimplene dress and living in drag in my old age has haunted me ever since.

Conclusion The autoethnographies presented above offer an initial insight into the sense of embodiment of care practices that run through the following chapters. Above we shared some of the visceral memories and recollections that mark our thinking about care work and growing older, and those are precisely the experiences that shaped our approach to the analysis of media texts and the conversations with carers that follow. The two autoethnographies were produced independently and then shared and discussed in the spirit of feminist autoethnographic work. In this process both authors ‘not only made decisions about the research process but also kept themselves accountable to each other’ (Ngunjiri et al. 2010, 6). Collaborating fully at all stages of the research process, the thinking, the writing and the sharing involved in the creation of these two autoethnographies sensitised us to our shared and individual feelings about what it means to care in British care homes. As the following chapters will reveal, we found echoes of each other’s experiences in our different autoethnographic accounts, memories and experiences that would later resurface in other carers’ accounts of performing the work (see Chap. 4). Whilst these experiences were separated by nearly 20 years, there remain significant parallels in the narratives of doing care and in the articulation of legacies of care work, both physical and emotional. We found that our

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time as carers has left physical reminders in our bodies. Ros writes of the injuries to her shoulder and arm as a result of moving and handling residents on her own during night shifts, and Hannah writes of the twinge in her sciatic nerve that serves as reminder of her time as a care worker. The haptic memories of performing care work resurface spontaneously when we recollect the spaces and places of our work. From smells such as faeces and urine, to warm toast and marmalade, to feelings such as distress or paranoia when confronted with media portrayals of the work, the legacies of our time as care workers are carried with us in tangible and less tangible ways today. One of the most impactful shared understandings that emerged through our process of autoethnography centres around multiple concerns around time. The institutional provision of time to care emerged in both autoethnographies, highlighting a contrast between Ros’ and Hannah’s experiences of night and day shifts. Ros wrote of the liminality of night shifts and the resultant time she could spend with residents, which stood in stark contrast to Hannah’s experiences of rushing room to room to make residents ready for breakfast. Within the autoethnographies so too emerged an account of our personal relationships to time—an aptitude for night or day shifts, lamenting time spent away from family and friends, where and on what we felt we might better spend our time (not simply on bed and body care) and also about our consciousness of our own place on the life course. With questions of time swirling through both autoethnographies in different ways, we agreed that no matter whether we worked days or nights, in the 1990s or 2000s, there was never enough time to truly care. These were shared experiences that, again, remerged in our conversations with carers and issues we found refracted in and through the media texts we examine in Chap. 3. Together our autoethnographic reflections on our time spent working in care suggest that whilst the British care home landscape has changed a great deal over the years, a dearth of time remains one of its biggest failings.

References Deitering, Anne-Marie, et al. 2017. The self as subject: Autoethnographic research into identity, culture, and academic librarianship. Chicago: Association of College & Research Libraries. Ngunjiri, Faith, et al. 2010. Living autoethnography: Connecting life and research. Research Practice 6 (1): 1–17.

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Shoemaker, Deanna B. 2015. Autoethnographic journeys: Performing possibilities/utopias/futures. In Handbook of Autoethnography, ed. Stacy Holman Jones, Tony E. Adams, and Carolyn Ellis, 517–537. London: Routledge. Spry, Tammy. 2016. Autoethnography and the other: Unsettling power through utopian performances. London: Routledge.

CHAPTER 3

Little More Than Fools and Monsters: Care Workers in the UK Media

Abstract  This chapter examines the principal ways that carers are represented in a range of media. Although not offering an exhaustive media scan, this chapter explores significant interventions and trends in the representation of UK care workers over the period pertinent to this book (1989–2019). The first section charts the representations of care workers in the news media and highlights that often they are portrayed in negative ways. It then explores television representations in Waiting for God, Grandpa’s Great Escape and the Panorama documentary Behind Closed Doors: Elderly Care Exposed, the latter proving to be an influential context for the experiences of the carers interviewed in Chap. 4. These are contextualised by two British produced films, Mrs Caldicot’s Cabbage War and The Best Exotic Marigold Hotel. We argue that understandings of care work practices are tainted as a consequence of dominant media depictions. Keywords  Media representations • Dirty work • Negative memory sphere • Habitus

© The Author(s) 2020 H. Grist, R. Jennings, Carers, Care Homes and the British Media, https://doi.org/10.1007/978-3-030-35768-9_3

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Introduction Not for the first time, the care sector is getting some seriously bad press. And while public opinion turns on us, those who work in care homes are caught between trying to defend our sector and trying to disassociate ourselves from it. (Smith 2014, online)

Over the period covered by this study (1989–2019), the technologies of mass media have developed and proliferated so that their ‘ubiquitous and consonant stream of messages’ (Scheufele and Tewksbury 2007, 10) is now able to reach and interact with audiences in modes that were unthinkable in 1989, which is the date that we take as the starting point for this study. News media consisted primarily of newsprint and radio and television broadcasts. At that point in time, television consisted of four terrestrial analogue channels (BBC 1, BBC 2, ITV and Channel 4). These days, the news mediascape is more immediate, intertextual and interconnective. News, films and television programmes stream to smartphones, tablets, as well as to televisions, and their reception is disseminated and discussed via social media platforms. The smallest of incidents can now become viral in their coverage and reach. An awareness of this complex media nexus weaves through not only our thinking while researching this book, but of course provides the context in which our conversations with carers took place. It is within this changing media context that representations of care workers caring for old people in British care homes are examined in this chapter. Since public understandings of these workers and institutions stem more often or not from negative media news stories (Gilleard and Higgs 2018), it is important to interrogate the ways in which these ideas circulate and intersect more broadly within British media forms and, as we will discuss in the later part of this book, how they impact on the work and life experiences of care workers. Whilst there are a significant number of films and television shows that we might have analysed in this chapter, the texts we cover below are those which the authors and participants remembered as being particularly conscious of during the period(s) in which they performed care work. What follows is not, therefore, intended to provide an exhaustive media scan over the period in question, but instead explores what we suggest symbolises significant interventions and trends in the representation of UK care workers over the period relevant to this book.

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This chapter focuses on representations generated through popular television, popular film, news media and documentary. The texts that are explored provide highly visible media moments that feature care within care homes at points in time over the period of this research. The television texts that are explored in this chapter are the BBC comedy series Waiting for God (BBC 1990–1994) and Grandpa’s Great Escape (BBC/ King Bert 2018). The films that are focused on are Mrs Caldicot’s Cabbage War (Evolution Films 2003) and The Best Exotic Marigold Hotel (Blueprint Pictures 2011). Analyses of these fictional television and film representations of care workers are contrasted with a discussion of the high-profile BBC Panorama documentary Behind Closed Doors: Elderly Care Exposed (2014). We argue that this undercover exposé stands as a landmark moment in a set of media discourses that work together to represent care workers as predominantly either fools or monsters. This programme was consistently cited by the participants interviewed in Chap. 4 as being a significant media context to their understandings and also experiences of their work in British care homes. This analysis does not ignore that elder abuse takes place within the social care system, but points out that there is a tendency for the media to scapegoat care workers rather than exploring the complex intersections of power, stress, financial and institutional pressures that create toxic work cultures and practices (Oliver 2014).

Carers, Care Homes and the News as a Negative Memory Sphere When investigating news articles featuring care workers in care homes for old people, it is important to recognise that journalism performs a vital source of cultural memory work (Zelizer 2008; Zelizer and Tenenboim-­ Weinblatt 2014)—it provides a reservoir of cultural constructions about what sorts of people carers are. The circulation of what is reported as news discourse has the power to shape what will become prevalent cultural assumptions about care workers and care homes/nursing homes—often based on the sensational headlines that concentrate on abusive care and not ‘the complexity of dealing with frailty (including dementia) from the perspective of the professionals, families and older people’ (Meyer 2014, online). A process of Google online searching was used as a convenient form of sampling over a period of 18  months. Although other news media

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databases such as Lexis Nexis and the British Universities Film & Video Council’s (BUFVC) Box of Broadcasts (BoB) would have also provided useful searches, unlike Google however, they were not always readily available during the 18-month period of research that was undertaken in the run-up to this book. Intervals of two months were used to collect data so that emergent and ongoing stories could be identified. Google searches were undertaken using the terms ‘carers and nursing home news stories in the UK’ and the following pattern of items occurred on each occasion. Search engines present their results in a list that is ranked in order of the highest number of returns related to the search terms entered and according to the search engine’s (in this case Google’s) ranking algorithm. In poll position on each search occasion was always at least one advertisement for a local nursing home, ranked at the top of the list because it was paid for via Google Ads (where companies pay Google to have their advertisements feature prominently in the ranking of search results). Located immediately beneath these were always one or two care home abuse stories, for example, ‘Four care workers are sentenced for abusing elderly residents at a care home in Lancashire’ (BBC news online, January 2014); ‘Fear as millions at risk of carers with no training’ (Express online). A regular item to appear on the search pages, but further down, is a ‘Care Homes – BBC News’ banner headline that has links to the BBC online pages listing care home stories. Apart from the lack of advertisements for care homes, the same formula of care home abuse stories dominates the list. On both the Google search page itself and on the BBC list page, stories which offer an alternative view to that of abusive carers are in the minority. Despite this, there does seem to be a growing discussion over the last 18 months about a shortage of financial resource in the sector— for example, ‘Abuse taking place in 99% of care homes amid “chronic” underfunding, survey shows’ (The Independent online). In the period that these searches were undertaken there were no stories related to the relatively neutral search words ‘carers and nursing home news stories in the UK’ that concentrated on examples of good care provided by care workers. The concentration on the negative news coverage of carers is not surprising considering that news content in general is understood to be dominated by a predisposition towards the negative (Hofstetter and Dozier 1986; Rozin  and Royzman 2001). The search rankings offering stories of abuse reflect their domination of news stories that circulate via online technologies. With regard to the negative representation of carers in the news, there is a lingering misanthropic person

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memory (Ybarra and Stephan 1996) which constructs them as modern ‘folk devils’ (Cohen 2002) and scapegoats (Meyer 2014). It is from this news mediascape that the following analyses are explored.

Waiting for God The circumstances of older adult care in the UK have undergone substantial change over the last 30 years. National policies have in recent years began to ‘focus on care at home have led to older people going into care homes later and more sick’ (Meyer 2014, online). In the 1990s, when Waiting for God was first broadcast and when Ros and some of the carers interviewed were working as carers, the population of old people’s homes, as they were commonly called then, was therefore generally chronologically younger in age than the current demographic for these institutions. In the late 1980s–1990s, residents also tended to have less physical and cognitive impairment (RCN policy report 2010) than when they now take up residence. In the television comedy series Waiting for God, the residents of Bayview residential home for the elderly are illustrative of this type of somewhat younger and fitter population. The two central characters/protagonists of the series, Diana Trent (Stephanie Cole) and Tom Ballard (Graham Crowden) are residents of the care home and the series’ narrative focuses on them as the central characters, with carers and the care home manager acting as secondary characters. This reflects the way that carers are typically represented in fictional television and film. The work of care and the emotional world of carers are rarely touched on in these media, and this is no exception in the fictional television and film texts that are discussed in this chapter. Each text, however, draws on the negative memory sphere described in the section above, but does so in slightly different ways. In Waiting for God, the representations of the main care worker Jane (Janine Duvitski) and the care home manager Harvey Baines (Daniel Hill) are contingent on the type of care home that they work in and the characteristics and specificities of the residents’ relations with them, and as the central characters, of Diana and Tom in particular. Although they are both slowed down physically to some degree by age and, in the case of Diana, the pain of arthritis (Diana uses a walking stick), they are both nevertheless portrayed as being intellectually creative and mentally acute. Tom has been put in Bayview by his son and daughter-in-law, as they (more particularly the daughter-in-law) do not want their comfortable life as a

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couple disrupted by his presence and fear of having to provide future care duties themselves as he becomes frail. Diana was an independent career woman with no children or close family to assist her when her arthritis made it difficult to cope with everyday tasks of life without some help. She therefore made the decision to enter Bayview herself. Tom and Diana’s care needs are currently minimal. They are certainly not frail old people; they do not have any form of dementia and do not require full personal care. Consequently, they should not be considered to be on ‘wrong side’ of the socio-cultural dividing/segregation practices (Foucault 1982; Grenier 2006) that would constitute them as members of the fourth age: extremely frail and lacking autonomy (Gilleard and Higgs 2002). Absurdly however, just by living in a residential care home, Diana’s and Tom’s identities move into a transitional status. Ideologically, care homes, regardless of whether they offer nursing care, are liminal institutional spaces because their cultural location is on the margins of mainstream society (Chivers and Kriebernegg 2018, 17). By virtue of just being there Diana and Tom embody cultural hopes and fears about ageing, acquiring at the same time their own liminal personal status. They become de facto ‘fourth agers in-waiting’ and, consequently, come into closer contact with the ultimate consequences of fears related to extreme frailty and deep old age—the proximity of death. The title of the series, Waiting for God, encapsulates this, and the ‘spectre of death’ (Chivers and Kriebernegg 2018, 21) consistently permeates the narrative of all seasons of the series and is used consistently as a source of comedy. Diana in particular often articulates, in her matter-of-fact style, how close they are to death. For instance, she tells Tom in the very first episode when he first comes to live at Bayview that ‘we come here to die – we are born, we consume and then we die’. As residents of a care home, albeit one with residential not nursing status, they are in a constrained situation. As Martin (2001) explains there is obviously a paradox in ‘calling residential organizations “homes”’ (863). When people enter the residence, they become subject/subjugated to institutional power regimes (Foucault 1977; Hughes et al. 2019). A key basis for comedy in Waiting for God and also for story events in Grandpa’s great Escape, Mrs Caldicot’s Cabbage War and, to a lesser degree, The Best Exotic Marigold Hotel is enacted through resistance to the institutional power regimes that are in place within the residents’ new place and space of living. Their individual relinquishment of various amounts of autonomy within their new surroundings is pivotal to the action of each narrative and

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to their interaction with care staff, which takes place through the ‘daily agonisms of freedom that constitute the interactions between staff and residents, and between the residents themselves’ (Gilleard and Higgs 2018, 238). In her insightful article on a day in the life of a nursing home, Amelia Gentleman explains that ‘the staff here are kind, the rooms are bright, the care is thoughtful and attentive – and yet none of this compensates for the home’s unspoken function: a place where elderly people are left by their families to die’ (2009, online). In Waiting for God, the ‘daily agonisms of freedom’ take place in the ways that Diana and Tom mobilise their considerable cultural capital and intellectual acuity against the constraints of their situation through mobilising them against the care manager and main care worker, the kindly but in their eyes dim, Jane. Diana’s barbed sarcasm and Tom’s playful use of metaphor are their weapons of resistance against a wider social and cultural ageist regime that positions them, together with the other residents of the institution, as no longer productive and full members of society. Their targets, however, are those who implement institutional life locally on a day-to-day basis. As with other notable UK television comedy series centring on the lives of old people that have been broadcast during the last 30 years or so central to this book (e.g., One Foot in the Grave [BBC 1990–2001], Hold the Sunset [BBC 2018]), the narrative of Waiting for God is constructed so that the audience is positioned to concurrently identify with the central characters (i.e., the old people, such as Diana and Tom in Waiting for God). The audience is invited to identify with the protagonists as they triumph over those who form the butt of their humour within each story, whilst simultaneously laugh at them for also representing stereotypes of old age (Cuddy and Fiske 2004). In their pivotal roles within Waiting for God, Diana and Tom direct viewers towards not only a critique of the injustices endured in their experiences of failing autonomy while waiting to die in a care home, but also of the financially driven ethos underpinning the type of care provided. This is accomplished by pointing out the greed and incompetence of Bayview’s manager, Harvey Baines, to the viewers. In the early 1990s, Britain was just beginning to feel the impact of the neoliberalist reforms introduced as part of Margaret Thatcher’s time in office as Prime Minister (1979–1990). Bayview’s manager, Harvey Baines, is described by Tom as having a ‘little yuppy brain’ and is thus explicitly linked to Thatcherite economic policy. In mobilising Tom and Diana’s humorous acts of

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anti-ageist activism against the home’s manager, there are few who would disagree that he is a worthy target. Harvey takes an entrepreneurial approach to care home management and micro-manages the finances of the institution, penny pinching for profit (he is personally part of a profit share scheme linked to Bayview and therefore has a vested interest in making the maximum possible). Harvey sees and treats the residents as commodities he can exploit rather than human beings, which is exemplified by the fact he does not bother to learn the residents’ names. What is being served up to the audience through narratives that build identifications with Tom and Diana as heroic characters are messages of fairness and social justice. Harvey Baines is undoubtedly the ‘rotten little sheister’, as Tom calls him, and deservedly set up as an object of loathing. Less fair, however, is the text’s treatment of the main care worker, Jane. Her character is constructed by the writers of the series to be deliberately annoying. Jane has a sing-song voice that on the one hand embodies a professional cheeriness in her approach to her work but is also immensely irritating. The architecture of the space and the mise-en-scène of Bayview present it as a ‘homey’ (Martin 2001) or ‘home-from-home’ (Gilleard and Higgs 2018) type of facility; for instance, the care workers do not wear uniforms. From the opening title shots and accompanying classical type music Bayview is also presented as a genteel space and unsurprisingly therefore also a white space (there is only one minor character who is black and who is there to serve the tea). The building resembles a minor stately home with landscaped gardens and each resident has their own well-­ appointed private rooms, with some, like the adjoining rooms occupied by Tom and Diana, having terraces so they can spend time reading, taking tea and, in their case, playing Scrabble in the fresh air. Bayview is nonetheless in the eyes of what Tom calls his ‘fellow inmates’ perceived as a prison/ prison camp to which they have relinquished their liberty. Unlike in Grandpa’s Great Escape and Mrs Caldicot’s Cabbage War, the inmates are not led by Tom and Diana to orchestrate a mass escape. Instead they are led to acts of resistance and rebellion. Jane is representative of the institution, and her work is resisted by Tom and, more especially former journalist Diana, through the use of their cultural capital and an assured habitus (Bourdieu 1984) that is much more in keeping with the genteel surroundings. Jane is not middle class. She does not have the same level of education and language and, in short, does not possess the same cultural capital or assured habitus as the residents. She is therefore representative of the majority of people who enter into paid care work. As such, her role as a

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figure of fun in the series, because of her gullible nature (in particular her unrequited love, which is manipulated by Harvey Baines), her unworldly attitude and her lack of education, and more particularly, her lack of adult and apposite language is suggestive of a negative cultural attitude to care workers in British society despite the need for, and importance of, their work. Her portrayal capitalises on her irritating voice which exemplifies Bourdieu’s notion of embodied cultural capital where accents and/or dialect is key. Jane does not have a middle-class way of speaking, and her voice is used in the narrative as the conduit of many micro-indignities towards the residents. Her voice compounds her use of infantile, and therefore in the context of her caring role, what is perceived by the residents to be patronising and infantilising, language. Jane refers to going to the toilet as having a ‘little twinkle’ and suggests that Diana perhaps ought to go. Her encouragement to Diana being, ‘Or are we going to have to join the rubber sheet brigade?’ Diana’s response sums up Jane’s representation as both a carer in the series and a stand-in for care workers more generally—‘Dear God, you are really quite unspeakable, you haven’t got a clue.’ To fight the ageism that is embedded in the practices of care within institutions (cf. Katz 1996), resistance is offered in displays of superior cultural capital and habitus. As Hughes et al. (2019) suggest ‘those who have more social power will have greater ability in establishing representational space’ (4), and in Waiting for God this is at the expense of the representational space and power of Jane, who is a less educated and less articulate person. The spirit of the place (Martin 2001) as a home from home gives an illusion of autonomy to the residents, but they soon realise that the power and privilege of privacy has, in fact, been surrendered in return for care support in day-to-day life. The sharing of social space within the ‘place’ that is Bayview old people’s home is delineated by complex differences in power—some of which turn the expectations of an ageist society on its head by the demonstration of power along lines of social class within the social space (Bourdieu 1984; Hughes et al. 2019), and this is what makes the series such a success with viewers. Fears of ageing in a care home are lessened as the old people turn the tables on the institution (more especially Harvey Baines acting as stand-in for the institution) and the carers (with Jane standing in for all carers working in the sector).

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Mrs Caldicot’s Cabbage War First released in 2003, the film Mrs Caldicot’s Cabbage War is an understated and gently funny take on life in a British care home from the perspective of one of the residents, Thelma Caldicot (Pauline Collins). Relating to the same changing British care context as Waiting for God as discussed above, it is no surprise that many of the same themes, issues and concerns are explored in the film. The institution at the centre of the narrative is called the Twilight Rest Home. Sharing the notion of ‘twilight’ and end of days with Grandpa’s Great Escape, it disguises the actual institutional ethos with the use of ‘Rest Home’. In the same way that no real concept of care was evident in the Twilight ‘Care’ Home in Grandpa’s Great Escape, no concept of rest is manifest in the naming of this institution. Instead there are two contrasting and conflicting notions at work that are camouflaged by the term rest; these are stagnation and deceit. The idea of rest could be interpreted as the process of entering that liminal ‘twilight zone’ between life and death (literally resting in a limbo), but the initial way that the concept of rest is sold to the residents when they enter is that it will equate to resting from the work of the everyday maintenance of their lives. Their individual work and/or that of family and friends may have intensified as they have had to deal with increasing physical and mental impairments. What is sold to them as rest is respite from toil through the support of caring staff that will liberate them from the work of personal care, remembering medications, cooking and cleaning, and so on. Henceforth they will be free to enjoy their interests and the company of others. The reality, however, is that of stagnation. They are left to sit/rot with no opportunities for mental stimulation. This is typified by the locked piano in the corner of the room where they sit, leaving Bernard (Frank Middlemass), who is old but not frail in body or mind, to rig up a cardboard keyboard to place on his knee and to practice his musical skills silently. The deceit is compounded by the way in which the facility is sold to them as being ‘more like a hotel’ with rooms named the Balmoral Suite and so on, but unlike a hotel, the door is locked so they cannot come and go at will. Moreover, what often makes the reputation of a good hotel—the food—at Twilight Rest Home is both poor quality and used by the care home manager, Hawksmoore (John Alderton), as a weapon of control rather than a fine dining experience. As one resident says, the Twilight Rest Home is nothing more than a ‘second rate over-priced knacker’s yard’.

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The serial form of Waiting for God means that each episode presents a challenge to be solved by the central characters, Diana and Tom. In Grandpa’s Great Escape, Jack Connor and Grandpa organise the escape that leads to the nursing home scam being uncovered. The catalyst for change in Mrs Caldicot’s Cabbage War is Thelma Caldicot (Pauline Collins), who is manipulated by her son and daughter-in-law, with help from the family doctor, into taking up residence in the care home. Her family genuinely fear for her mental health because of changes in her behaviour following the sudden death of her overbearing and controlling husband. They do not want to accommodate any care for her, however, within their own comfortable lives, and once again, it is the daughter-in-­ law who is insistent on putting her in a home. Thelma at this point is in her early sixties (the actress playing her was 62 at the time) and perfectly capable of living an independent life. Rather than having a mental breakdown, she is actually just experimenting with her life and who she might really be after years of coercive control and abuse by a husband who was a bully. When she enters the Twilight Rest Home, Thelma is heavily medicated against her will and this process continues under the supervision of the home’s matron. The matron is constructed as a monster who is realistically portrayed as capable of abusive behaviour such as forcing medication down Thelma’s throat against her will. She is having an affair with the manager and is in his thrall. She conforms to his money-making management ethos by fostering an ‘impersonal and sterile spirit’ (Martin 2001, 865) throughout the institution, and this is reinforced by her leadership of intentional acts that destroy empathy and reduce the humanity of the residents and the staff, who have to witness and collude with her way of doing and seeing things. Her job is to enforce a regime that Hawksmoor describes as having a ‘fierce attention to detail’. Hawksmoor is the mastermind of the home’s regime, which includes refusing food to the residents if they complain about its quality whilst having gourmet meals cooked for him and the matron by the home’s catering staff. At the micro level, Hawksmoor oversees an abusive regime in the care home, and at a macro level, he works on behalf of a large property management group (along with Thelma’s son) whose only objective, as Thelma later exposes, is to generate maximum profit at minimum financial cost. He thus instigates a business model for care (Chivers and Kriebernegg 2018) that is at odds with any notion of compassion. He is fully aware that it is not easy for residents to either complain or move to another

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institution (Martin 2001) unless they have advocacy. Advocacy does however emerge via Thelma, with support from one of the care workers, Gina (Angela Bruce), who counters the stereotype of foolish and monstrous that has been prevalent so far. A working-class black woman who is capable and has integrity, Gina is a secondary character in the film, but her quiet heroism is the catalyst for empowerment and change for the residents. The notion of military combat is signalled by the word ‘war’ in the title of the film, and the invitation to think of the Twilight Rest Home as a prison (it is certainly a locked facility) is not a big leap. Thelma emerges as the resistance leader and advocate for her more institutionalised co-­ residents, but the journey to this is aided by Gina, who is a role model for care and compassion as a care worker and who herself is bruised and battered by the emotional strain of the home’s regime (Gilleard and Higgs 2018; Martin 2001; Meyer 2014). Gina refuses to collude with Thelma’s son and a lawyer to take Thelma’s house away from her (the matron does so without question) and pleads to take Thelma off her sedation when, after taking time to listen to her story, she realises that Thelma is actually fine. The matron, of course, will not hear of it, which leads to the moment she forces the pill down Thelma’s throat to Gina’s sickened horror. Gina also takes the blame for Thelma’s escape, and as a care worker with no recourse to union or legal representation, she is sacked with immediate effect. Once Thelma learns to pretend to take the pills and assists other residents to do the same, the small then escalating acts of resistance take place in the ‘cabbage war’. Cabbage appears at every main meal and the sulphurous smell of its over-cooking drenches the house. Martin (2001) reflects on the power of smells to negatively shape the care home experience for residents and staff, whether it is the smell of strong cleaning products used to mask bodily smells like urine, faeces and decay, or in this case, cabbage! What starts as resistance against the poor and repetitive food becomes a full-scale rebellion, with Thelma masterminding an escape to the local bowling green in the vegetable delivery van (where they play bowls with the many cabbages that were due to be cooked for their dinners) and finally to a nearby hotel owned by the property company, where her unsuspecting son is left to foot the bill for everyone. Ultimately, the home manager’s, Hawksmoor, and matron’s cruel and despotic regime is overturned by Thelma when she exposes the institution’s poor care on national television and forces the property management company that owns it to hand the care home over to her to manage

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or risk further exposure of poor ethical and financial practice. In this happy ending for residents and care staff, Gina is re-instated and takes on what was the matron’s previous role. Gina’s final words in the film are addressed to the residents returning to the Twilight Rest Home re-opened under Thelma’s new management. These final words are ‘Welcome to your home’, signalling that future resource will be invested in the lives and well-­ being of people rather than in profit.

The Best Exotic Marigold Hotel The inclusion of The Best Exotic Marigold Hotel in this chapter might seem like a departure from the UK-focused texts that have been discussed so far, but although filmed outside the UK, the film extends the representation of care work and care workers further by holding a mirror up to practices and attitudes prevalent in the UK and Global North. The text highlights a global, racial and, in this case, neocolonial dimension (Dolan 2016) to the representation of care workers in the media. The ‘presumed whiteness of old age’, as Chivers (2018, 85) emphasises, dominates the representations of old age in the media and in academic research. The narrative of this film transplants the whiteness of old age overseas within other understandings of old age care. As Sonny Kapoor, the architect of this care provision in the film, says: ‘I have a dream, Mummyji. A most brilliant one. To outsource old age. And it is not just for the British. There are many other countries where they don’t like old people too.’ Ciafone (2017) points out the ‘painful kernel of truth’ (158) in this statement, and ‘not liking old people’ forms an important context for the representation of care worker in Britain. Equally, the concept and reality of ‘outsourcing’ similarly informs the power dynamics of paid care work in Britain and overseas by reinforcing ‘labour hierarchies in which third world nations increasingly provide care for the elderly of the first world, both as a migrant workforce and as hosts to ex-pat retirees’ (Dolan 2016, 575). As forms of welfare support developed in Britain after the Second World War, the cultural imaginaries of what later life might be began to be reshaped and expanded (Gilleard and Higgs 2002). For many, the global financial crash in 2008 put an end to the possibility of a financially comfortable old age as previously imagined. Ironically, at the same time as this possibility disappeared for the many, notions of successful ageing began to take a strong hold in cultural discourses and in the media (Dolan 2016). Understandings of how people should age became directed by notions of

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activity and deferring retirement so they could once more acquire the material wealth to enjoy an ‘active old age’ (Chivers 2018) and embrace a range of lifestyle choices in retirement. The Best Exotic Marigold Hotel is premised on the gap between the realities of what the reduced circumstances of old age in Britain might now consist of versus this new way of fulfilling the prefinancial crash aspirations of an active and productive old age. Ciafone (2017) grasps the brilliance and absurdity of the fact that in this film, the ‘logics’ of active aging outsources ‘the maintenance of old age onto old people themselves, who are reimagined as resourceful, flexible, creative, and economically generative in terms acceptable to contemporary capitalism’ (156). This model of outsourcing removes the responsibility for care from the British state not only on to the individual, in line with neoliberal philosophies, but also beyond the British nation state to the jewel of its former empire, India. In so doing it reconfigures a neoliberal/neocolonial context for British ageing and care. Unlike Bayview and the Twilight Rest Home in the previous two texts that have been examined, where they were marketed to residents and relatives as being like hotels, what is on offer here is an actual hotel. By way of contrast to the high-spec minor stately home architecture offered by the two British institutions, the Marigold Hotel is rather ramshackle, though positioned as exotically so. As an institution set up to cater to the needs of older people it offers a light-touch model of care. It caters to active successful agers who are independent and autonomous and requiring little care. The only character who could be construed as a care worker is Anokhi (Seema Azmi). Her main role in the plot is to help Muriel (Dame Maggie Smith) confront her inherent racism and she is very much a character who is relegated to the background. Her care tasks are associated with looking after an ungrateful Muriel as she recuperates from the hip surgery that is only affordable to her outside Britain. Ciafone (2017) refers to Anokhi as ‘an intrinsic caregiver’ who, as a Dalit or ‘untouchable’ and at the very bottom of the Indian caste system, is culturally expected to do the ‘dirty work’ of care. Dirty work that Twigg (2000) conceptualises as lower-­ status body work carried out in relation to loathsome or feared bodies. In terms of the focus of this film but also throughout this book as a whole, loathsome and feared bodies belong to old people (Van Dyk 2014). Rather than a fool or a monster, here Anokhi is represented as kind, tolerant and patient. However, within the neocolonial context that the film creates (Dolan 2016; Ciafone 2017) she is still rendered inferior to others by a combination of her gender, race and caste.

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Panorama’s Behind Closed Doors: Elderly Care Exposed The exemplars of sound caring practices that we see with Gina in Mrs Caldicot’s Cabbage War and with Anokhi in The Best Exotic Marigold Hotel offer a sharp contrast to the representations of abusive care we see in the Panorama documentary, Behind Closed Doors: Elderly Care Exposed. This documentary is split into two halves. The first concentrates on the use of a hidden camera planted by a relative to uncover the poor care of her grandmother, Yvonne Grant, at Oban House in Croydon, South London. The second follows Alex Lee, a reporter sent by Panorama to work 36 undercover shifts equipped with a hidden camera in the Old Deanery, a 93-bed care facility in Braintree Essex. Her mission was to follow up on whether practices had been improved following concerns raised by whistle-­ blowers, who had informed on abusive colleagues and bad practices when they worked there themselves. In both cases, harrowing footage is produced that shows certain care workers mentally, emotionally and physically abusing vulnerable residents. The carers in question demonstrate no empathy and completely strip the residents that we see them deal with of their dignity. What is striking about the documentary is the way that issues of race, culture and power are left hanging in the air. With the exception of one carer who is white, the abusers are all migrant workers (both female and male) and the whistle-­blowers were white. It is Filipina and black carers that dominate the television screen in terms of the visual representations of abusive care incidents. As discussed earlier in relation to The Best Exotic Marigold Hotel, the changing spatial and temporal ordering of the body work involved in the care of old people (Twigg et al. 2011) has resulted in a ‘deficit’ in relation to meeting the care needs of an increasing population of infirm old people in the Global North (de São José 2016; Teixeira et al. 2017; Tronto 2013). In order to fill this deficit of care, there has been a striking change in the profiles of people who work to provide care for old people over the period covered in this study. Paid care in Britain is now being provided by ‘different groups of “subordinate-race” women or other migrants’ (Twigg et al. 2011, 181). Added to this is the fact that the body work of caring is, as discussed earlier, perceived as dirty work, bringing with it notions of contamination and contagion by contact not just with the bodily fluids but by association with the socially stigmatised

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bodies of the old people themselves (Twigg et al. 2011; Van Dyk 2014). This impacts on both the care workers’ feelings about the tasks that they are required to perform as part of their job and their self-worth and, moreover, the ways they are perceived in society (Dyer et  al. 2008; McGregor 2007). This layering of shame and humiliation born out of the economic necessity of being forced to leave their own countries and seek employment overseas is also compounded by racist and colonial legacies that, as Dyer et al.’s (2008) study suggests, lead migrant workers to feel that they are only employed to ‘undertake the sort of demeaning “dirty work” that British-born workers are not prepared to do’ (2036). In addition, it is clear that in both the homes under investigation there are huge pressures to meet the expectations of task completion above other aspects of care (such as communicating with and soothing residents). This taskfocused approach that is operationalised institutionally goes against the tenets of person-centred care (Duffy et  al. 2015; Roberts and Machon 2015) and is made even worse by the fact that appropriate training in the understanding of, and sensitivity to, the complexities of dementia care is obviously lacking in the interactions we see via hidden-camera technologies. For many migrant workers, the concept of the care home where old people are hidden away from family and community is a culture shock and adds to the shame of the dirty work, particularly for men who are forced take on these non-traditional roles, because they are migrants needing to take any paid work offered (McGregor 2007). This is something that is not examined in the documentary. As Dyer et al. (2008) state, ‘In a sense, those involved in dirty work become constructed as “dirty workers”’ (2032), and this may explain but certainly not excuse the monstrosity of their acts and representation in the documentary. What is clear is that although the neoliberal business model for the care homes in the documentary is discussed as contributing to poor care, the emotional experiences of the staff are ignored. This is negligent on the part of the programme makers, as research indicates a ‘correlation between abusive behaviour and high rates of staff burnout’ (Bulman 2018, online). It is also negligent in terms of the impact that such an imbalanced documentary has as a powerful contribution to the negative media memory sphere about care workers and care homes.

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Grandpa’s Great Escape Moving away from the representation of care workers within real British care homes, Grandpa’s Great Escape is a fictional and sympathetic exploration of a grandfather’s developing age-related dementia through the eyes and the love of his young grandson. The narrative is set in 1980s Britain, but the motif of the Second World War runs throughout the whole comedy drama. To protect his Grandpa from the threat of being placed in a care home because of his accelerating cognitive impairment, the grandson Jack enters into fantasy wartime scenarios with his Grandpa (Sir Tom Courtney) and, in so doing, intuitively produces a form of individual person-­centred care that permits him to connect with his grandpa in the here and now through disrupting linear notions of time (Baars 2012; Jennings and Krainitzki 2015). Grandpa, who had been a Spitfire pilot in the Second World War, responds to direction and orders from his grandson, who takes on the role of Squadron Leader. This form of care, though effective, satisfying and offered with love, is too much work for one small boy to keep going day and night. Without a similar commitment from the rest of his family and the community, Grandpa’s confusion leads him into danger, culminating in him climbing onto the local church roof to shoot down enemy aircraft in the middle of the night. As a consequence, the family are persuaded by the vicar of the church and the two gravediggers, who are witness to Grandpa’s antics, to put Grandpa into an old people’s home—the Twilight  Towers, which prides itself on ‘looking after your unwanted people’. Although not unwanted by Jack, as is the case in Waiting for God, it is the daughter-in-law (who is just starting to work part-time as an Avon representative) who is the most insistent in not wishing to curtail her life to take on additional caring duties beyond the ones she already has for her husband and children. As Gilleard and Higgs (2018) indicate ‘the nursing home has long been portrayed in a negative light, as an oppressive institution, prone to scandalous practices and serving as an antechamber to the grave’ (239). In Grandpa’s Great Escape the Twilight Care Home signifies all of these issues and typifies all of these concerns. As is the case in Mrs Caldicot’s Cabbage War, the use of ‘twilight’ in the care home’s name/brand replicates the idea of the place to wait for death. A liminal space, as the name twilight suggests, it is a place between day and night, and here in this context, a place between life and death where residents decline through increasing frailty into the fourth age and death. In this 2018 comedy

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drama, the depiction of the Twilight Care Home is also explicitly that of a prisoner-of-war camp. Above all, in the fantasy world of his dementia, which is outside the chronological time (Jennings and Krainitzki 2015) of the 1980s when the narrative is set, Grandpa views the forbidding and gloomy care home as a detention camp for a Spitfire pilot who has been forced to ‘bail out’. Grandpa thinks it is Colditz (which was a castle used by the Germans in the Second World War to imprison the most incorrigible allied military). As in the film The Colditz Story (Hamilton 1955), which focused on the ‘attempts at breakout from the imposing fortress by the multi-national prisoners, presenting prison-camp life as a continual game of wit and cunning – an endless challenge to get one over on the “Jerries”’ (Wigley 2018, online), Grandpa believes it is his duty to escape and get one over on the ‘Jerries’ who run the camp. As in Waiting for God, the narrative of Grandpa’s Great Escape takes on this spirit of overcoming adversity as its story line, but in its fantasy construction as a prisoner-of-war camp, the actions of Grandpa are those of direct action and escape. Grandpa’s Great Escape uses fantasy and the carnivalesque (Bahktin 1984) rather than realism to reveal its concerns. Abdullah’s (2017) definition of the carnival as ‘the place where the bourgeoisie meets the proletariat, where wealth meets poverty, where the scents and sights of the rich meet those of the street and of excrement and urine’ (117) fits perfectly with the milieu and representation of the Twilight Care Home. Once more the twin stands of greed (referring to care home management) and foolishness (the care workers) are the forms of representation of carer and care homes that are on offer in this fictional text. The Twilight Care Home’s sole purpose is financial gain. Mirroring contemporary stories in the UK press such as the ‘morally bankrupt’ care homeowner who took millions of pounds from wealthy pensioners and was jailed for 21 years (Barlow 2018, online) and the care home boss struck off after stealing £100k from a 97-year-old resident to blow on bingo (Balloo 2018, online), the Twilight Care Home is part of a fraudulent scam linked to the local church in order to pressurise desperate families who are not coping with their elderly relatives to place them into its care. This criminal behaviour is represented through complex intertextual and multi-level references to cultural beliefs about the moral bankruptcy of the care sector in Britain that circulate in the negative memory sphere of the media and the fantasy construction of the Twilight Care Home’s matron as a Second World War Nazi commandant in charge of a prisoner-­ of-­ war camp. Utilising mechanisms of farce (Davis 2017) and

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cross-dressing (cf. Garber 1992) in order to unsettle and challenge expected notions of order and propriety, the male vicar (played by Jennifer Saunders in male drag) and the female matron (also played by Jennifer Saunders) are, in fact, one and the same person. This both unsettles notions of the feminine as the locus of care in society and reinforces the sense that abuse in the care home sector is equivalent to a war crime. The use of the carnivalesque, where sex, gender and work roles are swapped, functions on several levels. Grandpa’s Great Escape is a family comedy drama dealing with serious issues, and there are multiple modes of address so that children and adults can interact with the storyline differently. The comedic negotiation of power relations between the ‘imprisoned’ residents and the staff is generated through devices such as cross-dressing, farce and the grotesque possibilities of the carnivalesque (Abdullah 2017; Davis 2017). The matron/commandant is portrayed as a grotesque monster. In keeping with the elision between the care home as a prison camp  and Colditz, her appearance and affectations are Germanic. She dresses in the style of an affluent Bavarian woman of the 1940s (tailored skirt suit with fur collar and a Tyrolean hat with feather in the band). Her modus operandi is that of institutionalised care and total control, which, like in the Twilight Rest Home of Mrs Caldicot’s Cabbage War, is achieved through the over-medication of the residents to make them sleepy, manageable and less demanding of time (and therefore also of costly staffing resource). Twilight Care Home demonstrates Foucault’s (1977) notion of physical and ideological control within total institutions such as prisons. The regulation and surveillance that Foucault alludes to within these institutional spaces is graphically illustrated in Grandpa’s Great Escape in relation to the surveillance of the residents through the use of the iconic wartime searchlights operated by the nurses pointed at the perimeter of the home’s grounds. Control is further maintained through ensuring the isolation of the residents from outside influences such as family (there is not an open visiting policy but rather staged open days, where there is an attempt to make the home look lively and inviting). As Martin (2001) argues from her reflexive ethnographic research within care homes: These facilities cannot be understood, in my view, unless the social relations and dynamics of ‘body politics’ – issues of power and control in the management of bodies  – are addressed. How power is deployed, and by whom,

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affects the aesthetic character of these organizations by influencing the ‘spirit of a place.’ (862)

The character of the place is that of a prisoner-of-war camp and control is also maintained through the threat of violence. The matron keeps a cattle prod close to hand and power is exercised in a hierarchical way reminiscent of the military model. The hierarchical exercise of power by the commandant/matron means that day-to-day care work falls to the ‘nurses’, Blossom, Rose and Tulip. The nurses, however, are not really trained nurses, which is in keeping with the cost-cutting regime and echoes common media fears about the knowledge and skills of carers who work in care homes. They are also not really Blossom, Rose and Tulip but rather men cross-dressing as women, and in fact they are the gravediggers who work with the vicar. This gender play represents them on the one hand as pantomime villains, but on the other hand, their bulky frames simultaneously represent prison guards, whose size and muscles represent physical violence and restraint. Through their cross-dressing, these nurses are rendered gender-odd and call into question a disjunction between traditional associations of femininity and women as the prime caregivers (Twigg 2004; Cancian and Oliker 2000). They are not revealed as male until near the end of the story with the denouement of the financial scam that has been taking place at the care home. In contrast to the matron, who is the instigator of the ‘war crimes’ against the residents (she forges their wills and sees them as ‘no longer wanted’), the nurses are represented as physically slow and lumbering as well as poorly educated and working class. They are outwitted by Grandpa and Jack, and although suffering with dementia, Grandpa in his wartime fighter pilot persona leads the great escape of residents. When the care home scam is finally revealed, the nurses explain their actions by saying that the matron, of whom they are rightly afraid, made them do it. To put it another way and in keeping with the prison camp guard motif—they were only following orders. The representation of the matron and nurses here is more extreme than in Waiting for God. Whilst Harvey Baines is greedy he is not a charlatan. There is no threat of violence as in Waiting for God, but in Grandpa’s Great Escape, the matron is truly monstrous. Once more the nurses (who are not really nurses) are portrayed as stupid pawns of a toxic work culture; fools who are unfit to perform their roles as carers.

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Conclusion The fictional and the documentary portrayals of care workers, care home managers and, by extension, care homes that are explored in this chapter both build on and further contribute to a negative memory sphere of representations of paid carers. For decades, news stories focusing on scandals and poor practice have informed the portrayal of care workers in British society. As the Panorama documentary illustrates in horrifying and graphic detail, abusive carers exist and must be made accountable for their actions. Skilled and compassionate carers do not make the news and therefore do not provide positive exemplars for the fictional media imaginary as those who provoke fear and disgust provide a negative context for this vital but de-professionalised job. It is refreshing to encounter the characters of Gina and Anokhi in the two films under scrutiny in this chapter. Their presence is to be welcomed as they represent the compassionate spirit and practices of care. They also exemplify the precarity of care work, where there is little status and few employment rights. In the representations under examination in this chapter, Gina and Anokhi are an exception. In the two television texts reviewed here and in news media scans that were undertaken, no similar accounts of the thousands of dedicated and empathic carers who do their best every day to provide good care emerged. The dominant mode of representation for care workers that circulates in the media memory sphere in Britain is as ineffectual fools and/or monsters. This permeates fictional portrayals and everyday understandings. As a consequence, the status and professional identity of care workers is diminished at a time when high-quality, compassionate and person-­centred care for old people is needed more than ever. The misanthropic currency of carers and care work founded on negative press makes it easy for carers to become scapegoats for a broken system. As David Oliver (2014) writes in the British Medical Journal from the perspective of an experienced medical practitioner: Given the collective denial and squeamishness around frailty, dementia, and extreme old age in society and in the media (and the kind of terminology used all too often: ‘grey tsunami,’ ‘ticking demographic time bomb,’ ‘burden,’ or, by doctors themselves, ‘acopic,’ ‘bed blocking,’ ‘social admission’) it seems only scandal and sensation make it to our screens. (Online)

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With the exceptions of Gina and Anokhi, it would seem that the media analysis in this chapter sadly confirms this view. The care workers explored in this chapter circulate in the British imaginary as little more than fools and monsters.

References Abdullah, Abu. 2017. Fluids, Cages, and Boisterous Femininity: The Grotesque Transgression of Patriarchal Norms in Angela Carter’s Nights at the Circus. Journal of Language and Cultural Education 5: 114–122. Baars, Jan. 2012. Critical Turns of Aging, Narrative and Time. International Journal of Ageing and Later Life 7 (2): 143–165. Bahktin, Mikhail. 1984. Problems of Dostoevsky’s Poetics. Minneapolis: University of Minnesota Press. Balloo, Stephanie. 2018. Care Home Boss Struck off After Stealing £100k from 97-year-old Resident to Blow on Bingo. Birmingham Mail [online]. Available at: https://www.birminghammail.co.uk/news/midlands-news/care-home-bossstruck-after-15089158 Barlow, Eleanor. 2018. “Despicably Greedy” Care Home Owner Jailed for Stealing Millions from Pensioners. Independent [online]. Available at: https://www. independent.co.uk/news/uk/home-news/care-home-owner-david-bartonjailed-millions-fraud-liverpool-crown-court-a8447071.html BBC. 2014. Hillcroft nursing home staff sentenced for resident abuse. [online]. Available at: https://www.bbc.co.uk/news/av/uk-25688160/ hillcroft-nursing-home-staff-sentenced-for-resident-abuse Bourdieu, Pierre. 1984. Distinction. London: Routledge. Bulman, May. 2018. Abuse Taking Place in 99% of Care Homes Amid ‘Chronic’ Underfunding, Survey Shows. Independent [online]. Available at: https:// www.independent.co.uk/news/uk/home-news/care-homes-abuse-residentsfunding-staff-uk-elderly-protection-a8266936.html Cancian, Francesca M., and Stacey J. Oliker. 2000. Caring and Gender. Walnut Creek: AltaMira Press. Chivers, Sally. 2018. What’s Exotic about The Best Exotic Marigold Hotel? Cinema, Everyday Life and the Materialisation of Ageing. In Ageing in Everyday Life: Materialities and Embodiments, ed. Stephen Katz, 83–98. Bristol: Policy Press. Chivers, Sally, and Ulla Kriebernegg, eds. 2018. Care Home Stories: Ageing, Disability, and Long-term Residential Care. Bielefeld: Transcript. Ciafone, Amanda. 2017. The Third Age in the Third World: Outsourcing and Outrunning Old Age to The Best Exotic Marigold Hotel. In Care Home Stories: Ageing, Disability, and Long-term Residential Care, ed. Sally Chivers and Ulla Kriebernegg, 155–174. Bielefeld: Transcript.

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Cohen, Stanley. 2002. Folk Devils and Moral Panics: The Creation of the Mods and Rockers. In Criminology: A Reader, ed. Yvonne Jewkes and Gail Letherby, 116–129. London: Sage. Cuddy, Amy J., and Susan J. Fiske. 2004. Doddering but Dear: Process, Content and Function in Stereotyping of Older Persons. In Ageism: Stereotyping and Prejudice against Older Persons, ed. Todd D.  Nelson. Cambridge, MA: MIT Press. Davis, Jessica Milner. 2017. Farce. London: Routledge. de São José, José. 2016. What Are We Talking About When We Talk About Care? A Conceptual Review of the Literature. Sociologia, Problemas e Práticas 81: 57–74. Dolan, Josephine. 2016. “Old Age” Films: Golden Retirement, Dispossession and Disturbance. Journal of British Cinema and Television 13 (4): 571–589. Duffy, Amy, et al. 2015. Caring on the Clock: The Complexities and Contradictions of Paid Care Work. New Brunswick: Rutgers University Press. Dyer, Sarah, et al. 2008. ‘Emotional Labour/Body Work: The Caring Labours of Migrants in the UK’s National Health Service. Geoforum 39: 2030–2038. Foucault, Michel. 1977. Discipline and Punish: The Birth of the Prison. New York: Random House. ———. 1982. The Subject and Power. Critical Inquiry 8 (4): 777–795. Garber, Marjorie. 1992. Vested Interests: Cross-Dressing and Cultural Anxiety. Oxon: Routledge. Gentleman, Amelia. 2009. A Day in the Life of an Old People’s Home. The Guardian [online]. Available at: https://www.theguardian.com/society/2009/jul/14/older-people-care-home Gilleard, Chris, and Paul Higgs. 2002. The Third Age: Class, Cohort or Generation? Ageing & Society 22: 369–382. ———. 2018. An Enveloping Shadow? The Role of the Nursing Home in the Social Imaginary of the Fourth Age. In Care Home Stories: Ageing, Disability, and Long-term Residential Care, ed. Sally Chivers and Ulla Kriebernegg, 229–246. Bielefeld: Transcript. Grenier, Amanda. 2006. The Distinction Between Being and Feeling Frail: Exploring Emotional Experiences in Health and Social Care. Journal of Social Work Practice 20: 299–313. Hofstetter, C.  Richard, and David M.  Dozier. 1986. Useful News, Sensational News: Quality, Sensationalism and Local TV News. Journalism and Mass Communication Quarterly 63 (4): 815–853. Hughes, Heidi, et al. 2019. Power Play: The Use of Space to Control and Signify Power in the Workplace. Culture and Organization 25 (1). Available at: https://doi.org/10.1080/14759551.2019.1601722 Jennings, Ros, and Eva Krainitzki. 2015. “Call the Celebrity”: Voicing the Experience of Women and Ageing Through the Distinctive Vocal Presence of

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Vanessa Redgrave. In Women, Celebrity and Cultures of Ageing, ed. Deborah Jermyn and Sue Holmes, 178–196. London: Palgrave Macmillan. Katz, Stephen. 1996. Disciplining Old Age: The Formation of Gerontological Knowledge. Charlottesville: University Press of Virginia. Martin, Patricia Yancey. 2001. Sensations, bodies, and the ‘spirit of a place’: Aesthetics in residential organizations for the elderly. Human Relations 55 (7): 861–885. McGregor, Joann. 2007. Joining the BBC (British Bottom Cleaners)’: Zimbabwean Migrants and the UK Care Industry. Journal of Ethnic and Migration Studies 33 (5): 801–824. Meyer, Julienne. 2014. Care Workers Need Support Instead of Being Scapegoated. The Conversation [online]. Available at: http://theconversation.com/ care-workers-need-support-instead-of-beingscapegoated-26257 Oliver, David. 2014. Older People in Nursing Homes—From “Hard Hitting Exposés” to Constructive Solutions. BMJ Group [online]. Available at: http:// blogs.bmj.com/bmj/2014/05/01/olderpeople-in-nursing-homes-fromhard-hitting-exposees-to-constructive-solutions Rozin, Paul and Edward B.  Royzman. 2001. Negativity Bias, Negativity Dominance, and Contagion. Personality and Social Psychology Review 5 (4): 296–320. RCN Policy Report. 2010. Care Homes Under Pressure  – An England Report,  [online]. Available at:  https://www.rcn.org.uk/-/media/royal-­ college-­o f-nursing/documents/policies-and-briefings/uk-wide/policies/2010/0410.pdf?la=en Roberts, Gwilym W., and Andrew Machon. 2015. Appreciative Healthcare Practice: A Guide to Compassionate Person-Centred Care. Keswick: M&K Publishing. Scheufele, Dietram A., and David Tewksbury. 2007. Framing, Agenda Setting, and Priming: The Evolution of Three Media Effects Models. Journal of Communication 57 (1): 9–21. Smith, Leon. 2014. Panorama Care Home Abuse Is Shocking, but Where Are Stories of Good Practice? Guardian Professional [online]. Available at: http:// w w w. t h e g u a r d i a n . c o m / s o c i a l - c a r e n e t w o r k / 2 0 1 4 / m a y / 0 1 / panorama-care-home-abuse-family-fear Teixeira, Laetitia et al. 2017. Screening of Dementia in Portuguese Primary Care: Methodology, Assessment Tools, and Main Results. Frontiers in Medicine  4 (197). https://doi.org/10.3389/fmed.2017.00197 Tronto, Joan C. 2013. Caring Democracy: Markets, Equality, and Justice. New York: New York University Press. Twigg, Julia. 2000. Bathing, The Body and Community Care. London: Routledge. ———. 2004. The Body, Gender, and Age: Feminist Insights in Social Gerontology. Journal of Ageing Studies 18 (1): 59–73.

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Twigg, Julia, et al. 2011. Conceptualising Body Work in Health and Social Care. Sociology of Health & Illness 33 (2): 171–188. Van Dyk, Silke. 2014. The Appraisal of Difference: Critical Gerontology Active-­ ageing Paradigm. Journal of Ageing Studies 31: 93–103. Wigley, Samuel. 2018. 10 Great Prisoner-of-war Films. BFI Blog [online]. Available at: https://www.bfi.org.uk/news-opinion/news-bfi/lists/10-great-prisonerwar-films Ybarra, Oscar, and Walter Stephan. 1996. Misanthropic Person Memory. Journal of Personality and Social Psychology 70: 691–700. Zelizer, Barbie. 2008. Why Memory’s Work on Journalism Does Not Reflect Journalism’s Work on Memory. Memory Studies 1: 79–87. Zelizer, Barbie, and Keren Tenenboim-Weinblatt. 2014. Journalism’s Memory Work. In Journalism and Memory, ed. Barbie Zelizer and Keren Tenenboim-­ Weinblatt, 1–14. Basingstoke: Palgrave Macmillan.

CHAPTER 4

Conversations with Carers

Abstract  This chapter brings together the voices of current and former carers to further develop the intricate picture of care and care homes already offered in the book. It explores the ways carers think about themselves, their roles and those they care for, and examines carers’ perceptions of their representation in the British media. This chapter focuses on the most recurrent themes from our conversations with carers—motivations for becoming a care worker, understandings and experiences of ‘good’ and ‘bad’ care, imaginings of their own future needs for care and, finally, carers’ responses to media representations of the role and of the homes they work in. Keywords  Motivations • Quality of care • Fear of the care home • Media representation This chapter brings together the themes identified in the earlier autoethnography and media analysis chapters with the voices of current and former carers to further develop the intricate picture of care and care homes already offered in the book. It explores the ways carers think about themselves, their roles and those they care for, and examines carers’ perceptions of their representation in the UK media. This chapter ‘centres on the life worlds of carers’, resulting in ‘a contextualised account of their experiences, drives and motivations’ (Chamberlayne and King 2000, 5). This © The Author(s) 2020 H. Grist, R. Jennings, Carers, Care Homes and the British Media, https://doi.org/10.1007/978-3-030-35768-9_4

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chapter draws upon the findings of the eight semi-structured interviews with participants who have worked or continue to work as care workers for older people in residential and nursing homes in Britain (cf. Chap. 1). Each interview lasted an average of 2–3 hours and they were carried out at locations across Gloucestershire and Wales. The interviews were audio recorded for subsequent transcription. Our conversations with carers were rich and nuanced, and focused on the real, lived experiences of care work which simultaneously challenged and reinforced the media representations we explored in Chap. 3. This chapter focuses on the most recurrent themes from our conversations with carers—motivations for becoming a care worker, understandings and experiences of ‘good’ and ‘bad’ care, imaginings of their own future needs for care and, finally, carers’ responses to media representations of the role and of the homes they work in.

‘It’s hardly for the money, is it?’: Motivations for ‘Doing’ Paid Care Care work remains one of the lowest paid employments in Britain despite the increase in pay afforded by the implementation of the National Living Wage (Bloodworth 2018). In her interview, Claire noted that when she was employed as a care worker in the early 1990s, the kitchen staff received better pay, arguing ‘You were better off going in for the day and cleaning carrots, than you were looking after the elderly for the day’ (interview with the authors, August 2017). The most recent Annual Survey of Hours and Earnings (ASHE) prepared by the Office for National Statistics (2018) notes that ‘[c]aring, leisure and other service occupations were the lowest paid group, at £374 per week’ (online). This reflects an ongoing trend in previous ASHE results and echoes the findings of the 2013 Cavendish Review that, even discounting leisure and other service occupations, ‘[c]are workers earn less than social workers, outreach workers, and every other worker in the social care space. Measured by money, direct, hands­on looking after people is the least valued job’ (23). Thus, whilst demand for care workers remains high, the value placed on care work is not reflected in the wage carers receive nor in the public understanding of the role: The relatively low pay in many of these jobs reinforces what is often seen as its low status. Yet this is no longer consistent with the increasingly demanding and responsible roles that many support workers are undertaking. It

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seems unlikely that public understanding of the roles has caught up with the reality. (Department for Health and Social Care, Cavendish Review 2013, 24)

So, why do people go into paid care work, if the role is undervalued by both employer and public opinion? Emily argued in her interview, ‘It’s hardly for the money, is it?’ (Interview with the authors, July 2017). Well, perhaps in part, it is. Care roles are easy to come by—with staff turnover reaching a height of 38.6% in 2017 (House of Commons 2018, 11), care homes are always recruiting. The National Living Wage coupled with flexible working might seem an attractive prospect for those in need of work. Previous experience of care work is very rarely an essential requirement for employment, though requirements do vary between employers. Some prefer to recruit those with experience of the role or those who hold full National Vocational Qualifications (NVQs) or a commitment to work towards a qualification. Other job advertisements call for applicants that can display, at interview or through their CV, something resembling a ‘caring disposition’. As many of our carers stated in their interviews, work in a care home was attractive because it offered an easy route into paid employment, especially in times of financial hardship. Claire suggested in her interview: I went into it [care work] because we’d gone overdrawn in the bank. We didn’t have any way of paying the overdraft back. We couldn’t ask my parents or [my husbands’] father because there wasn’t the money. (Interview with the authors, August 2017)

Jack (the only male care worker in our sample1) told a similar story, noting: At the time, it was a job. I was interested in it. It was a very quick interview process. The general feeling was you didn’t need any actual previous experience, they would take absolutely anybody. I needed a job, any job. That was the easiest thing to do in a hurry. I could look for something that was going to be my career later. (Interview with the authors, June 2017)

The motivations for ‘doing’ paid care work can be grouped roughly into two categories: intrinsic and extrinsic incentives (England et al. 2012). In our conversations with carers both intrinsic and extrinsic motivations 1

 See Chap. 1 on the gender breakdown of the sample used in this study.

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for ‘getting into care’ were entangled and hard to separate, as will be explored in more detail below. Extrinsic incentives include a restriction of other alternatives (perhaps having no qualifications to enter another line of work, for example, or being discriminated against on the basis of age, gender, race or class) or the need for direct payment or other reward for undertaking the activity (to pay off an overdraft, in Claire’s instance). Extrinsic motivations such as the need to earn a wage have had an impact on the gender imbalance in care work,2 as England, Folbre and Leana (2012, 22) argue: Sex discrimination in labour markets has increased the supply of women to both paid and unpaid care work by restricting access to other jobs, paying women less than men for equal work in male-dominated jobs (Reskin and Roos 1990; Bergmann 1986). If women cannot get predominantly male jobs, more of them will end up in female-typed paid care work.

Geographic proximity to nursing homes is also an extrinsic motivation for undertaking employment, especially for women, coupled with the flexibility that shift patterns allow. Many care homes offer flexible working from six-hour morning or afternoon shifts, to full twelve-hour  day or night shifts. In her interview, Claire noted that her husband ‘was working Monday to Friday, [so] the only thing I could do was work on a weekend. Which I did, and I did night shifts’ (interview with the authors, August 2017). Of those she worked alongside in her work in a private nursing home, Claire noted most were women ‘from the village. It was because they could walk there. It was local’ (interview with the authors, August 2017). This reinforces the findings of the Cavendish Review (2013) when it outlines that care workers are ‘more likely to work close to where they grew up’ (Department for Health and Social Care,  Cavendish Review 2013, 20). It echoes the words of Dunbar (2017) in her autoethnographic reflections on life as a Registered Nurse in a care home who wrote of the personal support workers ‘most of whom were middle-aged women from the village and the nearby countryside’ (97). This also holds true for one of the authors, Hannah, when she writes in her autoethnography that employment in the ‘local’ nursing home offered flexible employment that she could fit in around her studies and around caring responsibilities at home. 2

 See Chap. 1 on the role of gender in care work.

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Louise, who was employed as a care worker for over a decade before moving out of care work and into administration in the NHS, outlined her extrinsically motivated route into the role as being closely connected to family and the local area, and as a chance encounter: I started by chance, really. […] My sister-in-law was working down the road as a night shift carer, and they were very short staffed one night. I just had my youngest child, and she rang up and said, ‘Come down and help us.’ And I said, ‘I can’t do that, I’ve never done anything like that in my life!’ And she said, ‘You only have to sit, because otherwise, there’s going to be trouble…’ So, I did, I went down, I thought, ‘It helps them out.’ So, I went down, and I didn’t sit, I obviously walked around with her. I didn’t do any dirty work or touch anybody because obviously I had no [training]… The next day I had a phone call from the owner and she said, ‘Would you like to come down [for an interview]?’ And at the time I had a small baby, so I thought I’d give it a whirl. (Interview with the authors, June 2017)

Similarly, Kate (who later also worked in a care home alongside several members of her family and eventually became a Registered Nurse working in care homes) noted that she got into care work because her mother, who worked in a local care home, needed help on a shift one day. After a successful ‘trial’, she was invited to interview and took up paid employment as a care worker at the age of 15. She recalled: One Sunday [they were short-staffed] so Mum said to me would I like to go with her? So, I said, ‘Yes, I’ll come with you’, and ended up doing the shift with Mum, fetching and carrying, helping them to the toilet. […] That was on the Sunday. On the Monday I had a phone call from the lady that owned the home, would I like to go and see her, yes. I started on the Tuesday afternoon. (Interview with the authors, June 2017)

It is well-established that women are more likely than men to undertake both paid and unpaid care (Held 2006; Harrington Meyer 2002; Office for National Statistics 2018, online) and that care work is profoundly shaped by principles of femininity (Twigg 2000, 174). Care work is still largely conceptualised as ‘women’s work’ (Hakim 2004; Harrington Meyer 2002), and although care home provision is more highly regulated today than when both Kate and Louise began their care careers, their recollections of getting into care work as a ‘favour’ to a friend or family member links to ideas about the gendered nature of care outlined in Chap. 1.

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Moreover, the extrinsic motivations for getting into care work, for many of our carers, confirm Howes et  al.’s (2012) argument that care workers place high importance on the flexibility of the role, as many continue to provide unpaid care in the domestic space alongside their employment (74). This might be care provided for elderly parents or relatives, or, more frequently, care provided for children—again, work which is disproportionately carried out by women (Held 2006). The wage and flexibility offered by shift work in a care home acted as an extrinsic motivation for Emily, who suggested she ‘got into’ the role because she needed a job that fit in with her family life: I needed a job, but it needed to fit in around my children going to school, me being able to be at home when they were at home. But also, it was also something I enjoyed doing. I like looking after people, I like to listen to people. The older generation, I found, were very interesting. (Interview with the authors, June 2017)

Emily’s narrative about ‘finding’ care work thus displays a complex interrelation of extrinsic motivations and intrinsic factors. Intrinsic incentives include the enjoyment of the activity itself, and other prosocial intrinsic motives include the ‘values that flow from a sense of calling’ and ‘a desire to contribute to the happiness or well-being of a specific person’ or group of people (England et al. 2012, 22). Whilst she needed a job, Emily also outlines her prosocial motivations for undertaking the role—her preference for looking after and listening to people. Abel and Nelson (1990, 4) argue that ‘caregiving is an activity encompassing both instrumental tasks and affective elations. Despite the classic Parsonian distinction between these two modes of behaviour, caregivers are expected to provide love as well as labour.’ In her interview, Alice explored her realisation that with her mortgage paid off, when she was made redundant from her work in a call centre at the age of 50, she could finally do something she loved. For Alice, extrinsic motivations such as salary, flexibility around family life and geographic proximity were less of a consideration, and her prosocial motives were brought to the fore. Alice described being ‘hooked’ by the reward of helping others, arguing that for her the work is ‘revitalising. You’re doing it for two. You’ve got your energy and you want them to have energy’ (interview with the authors, August 2017).

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As the only care worker who undertook the job motivated by purely prosocial intrinsic factors, Alice was the exception in our group of carers. Most explored their reasons for going into care work as a combination of extrinsic and intrinsic motivations, suggesting they got into care work because they needed a job with a wage, work in the local area or employment with flexibility in hours, but also because they were interested in working with and helping people and found a love for the role. This echoes England et al.’s (2012) findings that in reality ‘a mix of motivational forms is often at play’ where ‘prosocial motives will be combined with concerns about extrinsic factors’ (24), and that those who get into care work often remain once they find they genuinely care about the well-being of those they look after once in the job. Whilst staff turnover is high in care homes, as noted above, finding an aptitude for the work and discovering fulfilment of prosocial motivations through the tasks and responsibilities associated with care work might account for the duration many carers remain in the role. All the carers we spoke to remained in the role for a minimum of 3  years, though many remained in the role longer, with an average of 7.8 years in total. This tallies roughly with the 2017–2018 data compiled by Skills for Care which suggests that the average length of employment as a care worker was 6.5 years (Skills for Care 2018, 46). For those we interviewed the reasons for leaving care work can largely be grouped in two—leaving care work for careers in the NHS as nurses or administrators, or to pursue an alternative career paths through further study (see Chap. 2, Hannah’s autoethnography). Thus, those we spoke to about their experiences of care work often had shared motivations for getting into the role and for leaving it. Whether they had worked as a care worker for 3 years or 20 years, all the conversations with carers offered narratives which outlined a complex picture of their experiences in which notions of good and bad care were significant.

Remembering Good and Bad Care The Care Quality Commission (CQC), independent regulators of health and social care provision in the UK, define good quality care as provision which is safe, effective, caring, responsive to people’s needs and well-led. These key lines of enquiry structure CQC inspections of care home provision and include issues such as safeguarding and protection from abuse, staff skills and knowledge, kindness, respect and compassion,

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person-centred care, and governance and management. The investigations adopt both qualitative and quantitative approaches, but ultimately result in a judgement across four classifications: the service provided is inadequate, the service requires improvement, the service offered is good and the service provided is outstanding (our italics). The most recent CQC report revealed 1% of nursing homes in the UK are providing an inadequate service, 17% of homes require improvement, whilst 79% and 3% provide good or outstanding care respectively (CQC 2018a, 55, b). CQC ratings are the standards many prospective residents and their families often use to select a care home (see Hannah’s autoethnography in Chap. 2) and are sometimes the measure that prospective care workers apply when choosing a home in which to work. There are many other ways in which ‘good’ and ‘bad’ care can be defined. As Cancian and Oliker (2000) hold, ‘Nurses and other caregivers may define good care in terms of caregivers having the power and resources to provide the care they think is needed’ (3), experiences which often do not match the ratings given by the CQC. In their autoethnographies, Hannah and Ros both write of their involvement in helping to select a suitable care home for family members, and of and using the CQC reports to structure the search. Upon selecting a suitable home which, at the time, had a ‘good’ CQC rating, Hannah and her family were distressed to find life in the care home for their family member did not meet their expectations, nor the ‘good’ rating the home had received. High turnover in management, Registered Nurses and care staff meant promises made before her family member moved into the home were rarely kept, and that whilst her family member’s basic needs were often met, the lack of continuity in staff meant fewer opportunities for an engaged and meaningful later life for her family member. Research has found that the quality of care changes over time, even within the same home (Wan et al. 2010). Often, poor management and high staff turnover are cited as the most significant reasons for changes in the quality of care provided. The most recent CQC report (2018a, b) highlights that in terms of management and leadership 1% of nursing homes in the UK were found to be inadequate and 17% require improvement, suggesting that poor leadership directly impacts on the quality of care provided. In her interview, Alice outlined similar concerns: [The home I am working within] are having massive problems. I don’t think they failed the CQC [inspection] but they were put on notice. […] A lot

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had been left in limbo [with a change of management]. Staff who were there were thinking they could do what they want. The new manager never stood a chance. (Interview with the authors, August 2017)

The provision of ‘bad’ care was linked to poor management and poor training in many of the interviews. Kate, for example, suggested that she had ‘worked in a lot of homes in a lot of places across the country and [she had] never yet been in a home where 100% [of the care workers] are good. It’s normally 75% are good and 25% are bad. I don’t think that’s any exaggeration, either.’ She went on to suggest that her estimation of the number of ‘bad’ carers links directly to ‘bad management’, who employ people ill-suited for the role (interview with the authors, June 2017). Whilst she recognised the raft of economic and structural limitations and pressures upon care home managers, Kate offered vociferous condemnation of the lack of empathy she perceived in one manager: When I first started in care there were three rooms downstairs that had lino on the floor. Everywhere else was carpeted. I thought this was bizarre. I asked the manager one day why some of the rooms had lino. He said, ‘They’re social services, they don’t pay full price.’ How, in today’s society, can we do that? How can we distinguish? They might not have paid for themselves, but they probably worked hard all their lives and contributed to the system. If they haven’t [contributed], do we have to identify them by not giving them carpet? (Interview with the authors, June 2017)

Similarly, poor management and organisation was cited by Jessica, who explored her experiences of providing care in a purpose-built care home. Unlike the rambling country homes Hannah described in her autoethnography, established in the early 2000s, the home Jessica describes was designed to support the care of residents advancing through the stages of dementia. For Jessica, dementia was so poorly understood by those who worked in this home (cf. Cooper et al. 2018) that decisions around layout and décor had a huge impact on the health and well-being of both carers and residents: They had a three-floor system which was supposed to be for different stages of dementia but…. They had dado rails on [the walls] on the bottom floor, and there was a lady who was walking around and… I was forever down the hospital with this lady who kept slashing her head open on the dado rail. It was crazy. There was only supposed to be four residents downstairs, but they

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were the wrong residents for that floor. […] [Taking injured residents to hospital] was awful, it makes you look awful, it makes you look like you’re the one who’s been irresponsible. It’s an issue that I raised, about the rail, and the fact that there wasn’t the staff downstairs [to provide enough cover]. (Interview with the authors, August 2017)

Threading through Jessica’s narrative about her time in this home were questions of responsibility and accountability. Jessica would usually be the person responsible for taking the resident to the hospital when she split her scalp open on the dado rail, and, sitting in the Emergency Department, she felt judged by healthcare staff for what she felt was truly the home manager’s irresponsibility. Despite reporting her concerns to the management team many times, Jessica felt there was a severe lack of accountability and reluctance to address safety issues in the physical environment or the severe staffing shortages. Jessica explained that at certain points there were so few care workers in the home that she often felt compelled to work 24-hour shifts, as her sense of duty to those in her care meant she could not go home and leave them unattended to. The impact of being regularly and severely short-staffed, her complaints to management going unheeded and the traumatic episodes she regularly witnessed led Jessica to report this home to the CQC. Several months after Jessica left the home for another, the management of the home changed hands several times. Later, we found that the quality of care at this home had improved, with the three-floor system operating correctly and the dado rails had been removed.3 The reporting of management or fellow care workers for bad practice is actively encouraged by the CQC and in most care home policies. Whilst whistle-blowing is a well-researched topic within nursing and healthcare studies (cf. Mughal 2019; Burke and Cooper 2013; Brown et al. 2014), in our conversations with carers, reporting instances of bad care was a complicated topic. A complex distinction between ‘poor practice’ and instances of ‘abuse’ was found nuanced throughout the interviews. Exploring her experiences of conflict with carers whom she confronted about their bad practice, Alice said: 3  In her search for a care home for her relative, Hannah visited the home Jessica had once worked at. She found the CQC report accurately reflected an improvement in the standard of care, and, paying close attention to the décor, Hannah reported the dado rails were nowhere to be found.

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They isolate you. I had a bad experience of that. […] I was rowing nearly every day with staff. Just the way they were working, they were rushing the floor, not talking when they were rolling people, stuff like that. […] It’s almost as if they’re doing it their way, and just do it. Some of them had only been there two-months and within those two-months a lot of staff won’t speak to them [about their bad practice], because they don’t want that bad feeling, so they let it go. Then that person gets more used to doing it that way. (Interview with the authors, August 2017)

CQC regulations include safeguarding against abuse, which includes ‘care or treatment that is degrading for people and care or treatment that significantly disregards their needs or that involves inappropriate recourse to restraint’ (2018a, b online). The real-world examples offered by Alice include rushing to complete the personal care tasks on a floor and roughly handling bed-bound individuals. Alice’s reflection suggests that the lived reality of working in a short-staffed care home was that many of these kinds of poor practices, bordering on abuse, were overlooked, in an effort to ‘get on’. Moreover, Alice’s reflection supports the assumption that where bad practice goes unchallenged, those behaviours and ways of working become embedded and often contribute to a culture of bad practice or of cutting corners (Morley et al. 2013). Aside from Jessica, none of the interviewees claimed to have made formal complaints to care home managers or to the CQC about any bad practice they observed in their roles. This is not to say that they did not ever report bad practice to senior team members or above, but their narratives about challenging colleagues who displayed such behaviours highlight the intricate and sensitive complexities of workplace relationships within care home cultures. Farmer (1996) outlines that although workplace cultures are interrelated with structure and processes, they are best conceptually reflected as a separate entity. ‘Core values are not intended to reflect the whole of the culture nor all of its values but rather how the organisational cultural is manifested in organisational climate’ (46). Those we interviewed described strikingly similar organisational climates despite the different time periods and geographic locations of their care experiences. A shared value which contributed to a care home culture for all of our participants centred around time. In interviews, those who remembered taking their time to carry out personal care duties recalled being reprimanded by those in charge or seen as ‘slacking off’ by other carers.

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As Foner (1994) writes in her work on American nursing homes, aspects of nursing home work cultures sometimes ‘pose problems for the most compassionate and most caring workers. Willing to go out of their way and beyond the requirements of the job to help patients, they can find themselves confronting group norms that discourage such efforts and pressure them to tolerate mistreatment’ (143). An example of this can be found in Louise’s reflections on asking for help from other care workers to complete personal care tasks. For resident and carer safety, most moving and handling policies in care homes state that the moving of residents with limited or no mobility should be carried out by a minimum of two carers. When floors run short-staffed however, carers often find themselves searching the corridors looking for ‘back up’ to help operate the hoist or transfer a resident from bed to wheelchair (see Hannah’s autoethnography in Chap. 2). On this Louise noted that looking for help often resulted in conflict with fellow carers, who would often move and handle residents (illegally) on their own: That’s the attitude that upsets me the most in the whole thing. If you ever ask for help you know that they’d go down stairs and, ‘Can’t she do nothing on her own?’ I used to think, ‘I’ve got to be strong here. If you can’t help me, I’ll go to the next person until I get somebody to help.’ Actually, you’re only hurting yourself. (Interview with the authors, August 2017)

Conversations with carers revealed a recurrent theme around notions of time and rushing to complete care tasks, as highlighted above in Alice’s and Louise’s reflection on experiences of poor practice. As Henderson (1995) argues, this conceptualisation of time highlights the strong link between the care home and the occupational culture of medicine regarding ‘time’, noting, ‘in medical culture, time is not just a tracking tool, it is a commodity that can be wasted, conserved or correctly used. The value placed on time is so strong that it becomes a virtually sacred commodity (Stein 1991)’ (43). Not alone in sharing her reflections on the scarcity of time in the care home, in her interview Louise explored the constant battle with fellow carers on her floor who would rush from room to room, offering basic care in the form of a ‘lick and a promise’ (or what Gubrium (1975) calls ‘bed and body care’). Louise argued that the focus was on completing personal care tasks such as washing and dressing, rather than on spending

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time offering conversation, paying attention to detail and practicing person-­centred care. She recalled with pride that I did used to get comments, especially Sunday morning, if I took them down in the wheelchair, they’d say, ‘Oh, we can see who’s dressed you, this morning’, because I’d make sure their clothes matched and they had the beads.4 (Interview with the authors, August 2017)

In her interview, Kate described a fellow carer much like Louise who risked combative comments from colleagues who subscribed to the ‘bed and body care’ method and took her time with each resident, no matter the cost to herself: [She] was one of these who didn’t mind if she finished half an hour later if it meant she had a conversation and gave somebody that time. Whereas, a lot of girls would be watching their watch to see what time it was, you know, basically, ‘I haven’t got time’, whereas [with this carer], it didn’t matter about the time. (Interview with the authors, August 2017)

The economy of care work is one in which the highest value is placed on productivity—the faster you can work the better, especially when working short-staffed. Henderson (1995) conceptualises this as a ‘cult of time’ (42). He argues: The net effect of the cult of time and task in nursing homes is suboptimal psychosocial care. This outcome is apparently acceptable due to an occupationally derived perception of time, in which time exists only in insufficient quantities and is not to be wasted by non-medical complains so that physical care tasks can be done. (43)

Louise reflected proudly on spending time getting residents ready in the mornings, taking time to choose appropriate clothing and matching jewellery. Thus, for Louise, ‘good care’ involved making time to meet both physical and psychosocial needs for those in her care. In another example, Louise revealed that whilst the home she worked in operated a bath/shower rota system, she would routinely offer residents baths and showers each morning and would spend time blow drying and styling hair 4  In her interview, Kate described the importance of dress and choosing matching jewellery for female residents. See Twigg (2009).

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after it had been washed. Whilst this meets the gold standard of person-­ centred care (Duffy et al. 2015, 24; Roberts and Machon 2015), it often resulted in conflict with other carers. In her interview, Jessica noted: It’s a stressful job, and you’ve got a lot of different personalities around you. Some that are harder than others to cope with on a daily basis. You have to learn to cope with those. Inevitably you’re going to get stressed. But then you’ve got to know when to take a time out. Even those who had been there for years and years, they didn’t seem to give a shit. (Interview with the authors, August 2017)

Jessica’s reflections remind us that conflict between carers can often be a feature of care home cultures and that differing approaches to care result in a range of challenges for those in the role. Gilleard and Higgs (2017, 235) hold that within the nursing home environment the challenge is ‘not confined to maintaining what has been called the “personhood” of the residents suffering from dementia and related disorders; it is equally a challenge for staff to maintain their own personhood in the face of constant threats to their own moral identity as carers.’ Tensions and conflicts between models of care and care practices, the challenges associated with the cult of time, and pressures on resource can often result in ‘burnout’ in care staff (cf. Duffy et al. 2015; Woodhead et al. 2014). Those who had been in the role for the longest, in Jessica’s opinion, were often those who most urgently needed to take ‘time out’ in order to tend to their moral identities and maintain their own personhood, in order to offer a higher standard of care. Similarly, Emily argued: The turnover is huge. People get burnt out, they get disillusioned, it’s not what they thought it would be, it’s too hard work, don’t have enough input from hierarchy, the training’s not there, the money’s never there, can’t do what you want to do to make their lives any better. People just leave. (Interview with the authors, June 2017)

In our conversations with carers, notions of bad care were often related to issues surrounding the training carers received (or, commonly, the lack thereof). Claire, who was employed as a care worker in the early 1990s, explained: There was no training. No, we were just told to get on with it by the qualified. […] It was just hands on, straight away. It was, ‘This is how you do

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this. Roll this person over the old-fashioned draw sheet and then, rolled one way, put the draw sheet under….’ (Interview with the authors, August 2017)

Whilst we might have expected that with the increasing regulation and formalisation of care work since Claire started in the 1990s mandatory training would be routine, many of those we interviewed relayed similar experiences of learning care work. As the youngest of those whose experiences have been drawn upon for this book, Jessica and Hannah began their time as care workers in the early 2000s, and whilst they were required to undertake basic moving and handling training (as Hannah outlines in her autoethnography in Chap. 2), most of the ‘learning’ about how to care took place on the job. Emily, who was employed as a care worker from the late 1980s to the late 1990s, suggested that ‘how to do’ care work is a form of tacit knowledge, which is communicated between carers: It’s all passed down from carer to carer. If you’re lucky, and you get paired up with [a good carer] … Normally you get paired up with somebody on your first shift, or your first few shifts, don’t you? You learn the rules. (Interview with the authors, June 2017)

This model of passing down knowledge recognises the gap in formalised training provided by care home owners. Viewing the process of developing good care practices as a ‘passing down’ of knowledge, skills and values from experienced carers to new ones links to the notion that there exists a particular cultural capital and habitus (Bourdieu 1984) associated with care work. This further supports the idea that in care home cultures where bad practice goes unchallenged and where meaningful training is sparse, what is ‘passed down’ from carer to carer can further embed negative attitudes and poor practices. Emily’s statement ‘if you’re lucky’ discloses the fact that care workers are sometimes ‘unlucky’ and are paired with those who exhibit bad practice, perhaps due to lack of training or because they have been enculturated by their predecessors in negative ways. The impact of care work and training was explored at length by Jessica in her interview. She explained: There should be a lot more training. Not just physically in terms of how you handle people, but mentally as well. […].

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I think there should be support outside the work, in terms of having someone you can talk to confidentially. You’re dealing with people who have or haven’t got family by their sides and they have no relation, almost, to that family anymore because of their illness and that’s crazy to see. It’s devastating, it’s a really hard thing to get your head around. To be able to talk to someone about that would make a massive difference. […]. I think as you learn about the people that you’re caring about, you learn different things about yourself as well. […] You look back on it in a couple of years and think, ‘Wow, that had a massive impact on the way I look at things.’ It shapes you, and I think there should be more support. (Interview with the authors, August 2017)

Jessica revealed a need for support for care workers which goes beyond basic moving and handling training during the first weeks in the role, a holistic support which recognises the psychological and psychosocial needs of care workers. In recognising these needs, Jessica argued that the quality of care overall might improve, that care workers might face burnout less often and that care home cultures which tolerate bad practice might no longer thrive. Whether related to time, training or poor management, throughout notions of bad care structured our conversations with carers. These discussions led to one of the most problematic and unsettling findings of this project—that current and former care workers could rarely envisage a future in which they resided in a care home themselves.

‘I’m buying a shotgun!’: Avoiding the Care Home in Old Age The carers we spoke to offered a bleak picture when asked to imagine themselves dependent on residential or nursing care in later life. The most impactful emotional legacy of work in a care home, we found, was ultimately that none of the carers we interviewed for this project see themselves growing old in a care home. Most of those we spoke to, in fact, suggested they would rather take their own lives than be faced with the prospect of spending their last years in a residential or nursing setting. As the population of the UK ages, and with the forecast that by 2040 the care home will be the most common place of death (Bone et al. 2018) for older people in the UK, it is likely that many of us will face the prospect

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of living (and dying) in a care home in later life. When asked how she would feel about moving into a nursing home in later life, Claire replied: Myself? I’d take the tablets. I’ve got a supply of blood pressure medication. I really would not want that for myself. I used to think it was tragic seeing them. They were like shells of their former selves. Demented, confused, very needy, distraught often. What a way to end your life, just sit in a chair like that. (Interview with the authors, August 2017)

Within Claire’s narrative there is perhaps a conflation of life in a care home and life with dementia. We must question how far the argument that she would rather take her own life than end up in a care home is informed by her experiences of the institution itself, by her experiences and understandings of caring for those with dementia, or by wider cultural narratives about the care home or of ageing as decline (cf. Gullette 2004, 2017; Cruikshank 2009; Sandberg and Marshall 2017; Katz and Calasanti 2014; Katz and Marshall 2003). The NHS (2017 online) states that 1 in 14 people over the age of 65 will develop dementia, and that the condition affects 1 in 6 people over the age of 80. It projects that by 2025 the number of people living with dementia in the UK will have increased to around 1 million. Globally it is predicted that the number of people with dementia will double every 20 years (Prince et al. 2013; Ferri et al. 2005 cited in Prince et al. 2013). It is estimated that of all care home residents, approximately 69% are living with dementia (Prince et al. 2013), which Gilleard and Higgs (2010) refer to as the ‘densification of disability’ in care home settings. Gilleard and Higgs’ (2013) concept of the social imaginary of the fourth age is best understood ‘as representative of a feared “state of becoming”, an ascribed community of otherness, set apart from the everyday experiences and practices of later life.’ They describe its ‘otherness’ as being ‘reflected through its representation within third person narratives by themes of abjection, frailty and marginalisation’ (368). Media representations of dementia evoke ‘frightening images, presenting it as a kind of living death for its sufferers—the body remains but the person is lost’ (Hillman and Latimer 2017, online). The narrative of abjection, frailty and marginalisation, and of a feared state of ‘becoming’ living dead can be traced within Claire’s description of becoming a ‘shell’ of her former self, physically and emotionally dependent on others. Claire’s reflection is a significant example of the power of the social imaginary of the fourth age.

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Coupled with first-hand experience of a care system ill equipped to manage the loss of personhood that comes with dementia, Claire, like many of those we interviewed for this project, were unable to imagine a meaningful later life spent in a care home. Hillman and Latimer (2017, online) remind us that ‘meanings of dementia are interpreted, embodied, or resisted by people in their social contexts, and these processes are shaped according to their social location (gender, social class, and ethnicity) and their individual biography’.5 As we have demonstrated, this has special relevance when considering the meanings of dementia for those who have direct experience of caring for others with the condition. Both Alice and Emily offered similar views of the care home as the last choice, though both reflections were structured by a preference for care that is family and community centred. Alice argued: I would try and stay out of a care home because I’ve been in them, and no matter what you think, and I know how I am with them, there are not so many of ‘me’ as there are bad carers. I would stay at home. If I needed it, I’d prefer care in the community, because I did that, and you had a lot more people, that would have a laugh with you, do little extras. If you’ve got it there. So, if I couldn’t get family to assist me, it would be the last place I’d want to go. (Interview with the authors, August 2017)

Alice’s reflection signals that her experiences of work in the care home have resulted in an intention to avoid it as a personal destination for her own later life, inflecting notions of good and bad care as a rationale. At the same time, Alice’s experience of working as a domiciliary carer in the local community where doing ‘little extras’ was a part of the role offered an alternative, more palatable vision of care should she need it. Alice describes a personal hierarchy of care provision in later life, which was echoed by Emily in her reflections. Emily explored her perception of the care home as a place in which person-centred care can never be totally realised, outlining a similar hierarchical order to her future care preferences: I do not want to go to a home. No matter where you go, and I know it’s to do with logistics and you can’t have everything tailored to the one person, it’s just not possible in a group setting… But it doesn’t matter the amount of money you’ve got, the number of wonderful carers you have in the world, 5  See also Nizzi’s (2015) work on the context-dependency of understandings of Alzheimer’s disease.

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things always go wrong. Your needs are never completely met. I would not want to go into a home. I do not want strange people looking after me. I know, sometimes, you have to, and I get that. If I had a choice, my choice would be to be cared for at home. If not, I would jump off a bridge. (Interview with the authors, June 2017)

Where Claire suggested she would consider taking an overdose of blood pressure medication to end her life and Emily argued that she would jump off a bridge if home care was not an option, Jessica outlined another way to avoid the care home: travelling to Switzerland, where euthanasia is permitted by law: I’m buying a shotgun! […] No. I’d rather go to Switzerland though, if I’ve got the option, if I’m still compos mentis… I had this conversation with Dad the other day and we both agreed that if it happens, we’re going to go to Switzerland. […] Death’s so taboo, but it shouldn’t be, because everybody faces it and everybody faces it in different ways, so people need to start talking about it more I think. People are scared of it, I think. (Interview with the authors, August 2017)

The assisted dying or euthanasia debate is complex and ongoing (cf. Biggs 2001; Jackson and Keown 2012; Huxtable 2013), augmented by research on the topic in countries in which assisted suicide and/or euthanasia has been legal for decades, including the Netherlands, Belgium and Switzerland (cf. Thomasma et  al. 2008). At the time of writing, both euthanasia and assisted dying are illegal in the UK. Under the terms of the Suicide Act (1971) assisting suicide is punishable by up to 14 years’ imprisonment, and depending on the circumstances, euthanasia is regarded as either manslaughter or murder, which carries a maximum penalty of life imprisonment (NHS 2017, online). Despite this, a 2014 study revealed that 59.5% of a 725-person sample in the UK were in favour of physician-­ assisted suicide as an option for themselves or their partner (57.4%) if they had severe dementia (Williams et  al. 2007 cited in Downie and Lloyd-­ Smith 2015, 104). A more recent YouGov poll (Dignity in Dying 2017) commissioned by the UK charity Dignity in Dying revealed that 53% of those surveyed would travel abroad for an assisted death and 66% reported that they would consider breaking the law to assist a terminally ill loved one to have an assisted death abroad.

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Jessica notes the importance of retaining the ability to discuss end-of-­ life options and to plan how to end one’s life in her reflection in her use of the term ‘compos mentis’. Where physically debilitating diseases such as motor neurone disease, cancer and multiple sclerosis are often referenced in the debate around assisted dying, conditions such as dementia are less frequently included. This is in part due to the complexity around informed consent and mental capacity required to undertake an assisted death, issues which are well-researched in dementia studies (cf. White 1994; May et al. 2009) and here research into the use of advance directives is particularly useful (cf. Griffiths, Weyers and Adams 2008). Whilst assisted dying remains prohibited by law in the UK, people who seek an assisted death are forced to travel abroad where it is legal, often to the Swiss clinic Dignitas. In May 2019, the House of Lords debated the issue once more, in light of a police investigation into the actions of Ann Whaley, a 76-year-old woman from Buckinghamshire who helped to organise an assisted death at the Swiss clinic Dignitas for her 80-year-old husband Geoffrey, who had suffered from motor neurone disease since 2015. In the Hansard of 23 May 2019 (online) Lord Dubs of the Labour Party asked, ‘How much longer can we say to people that the only legal thing they can do is take the lonely journey to Switzerland? Surely, we as a society can show more compassion to people than that.’ Since 2002, 357 British residents have ended their lives at Dignitas (Dignity in Dying 2017, 11). In their report ‘True Cost: How the UK Outsources Death to Dignitas’ (2017, 6) Dignity in Dying campaigners outline the average cost of obtaining an assisted death overseas is £10,000. The report outlines that the cost is prohibitive and means that the majority of people in the UK cannot afford to seek one. This highlights the continued marginalisation and discrimination against older people, who cannot conform to neoliberal third-age ideals of independence and physical and financial productivity. Parliament UK (2019 online) notes: The key argument made by many of those opposed to a change in the law is that ill and disabled people may feel under pressure to end their lives, perhaps because of the cost of the medical treatment needed to keep them alive, or because they do not want to be a ‘burden’ on friends and family.

We must question is how far the ‘burden’ narrative in debates on euthanasia and assisted dying is fuelled further by the cultural imaginary of the

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fourth age which positions the ageing body as abject, failing and dependent and by cultural narratives that position the ageing population as an apocalyptic demographic (Robertson 1990) or a ‘grey tsunami’ (Barusch 2013; Chivers 2013) affecting a drain on financial and emotional resource. In the foreword to Megan-Jane Johnstone’s comprehensive work Alzheimer’s Disease, Media Representations and the Politics of Euthanasia: Constructing Risk and Selling Death in an Ageing Society (2013), Steven G. Post wrote compellingly about the impact that neoliberal narratives of the third age (and, as a consequence, the cultural imaginary of the fourth age) have on those with dementia or other cognitive conditions that disproportionately affect older people. He argued that ‘the perils of forgetfulness are especially evidenced in our culture of independence and economic productivity, that so values intellect, memory and self-control’ (xii). Post reminds us: Our task is to preserve identity. We must see the glass of self-identity as half-­ full rather than as half-empty, and understand that metaphors such as ‘gone’ or ‘husk’ are dehumanising and empirically suspect. […] Imagine a world in which gentleness, patience and calming care triumph […] Imagine a world in which caring for the deeply forgetful is deemed a privilege and a trust. (2013, xiii–xiv)

In asking us to imagine a future which challenges current understandings, practices and representations of those with dementia (and, we would infer, all care home residents), Post captures a vision of the future which seemed elusive to many of those we interviewed and in our own reflections on how we want to be cared for in later life. Of all those we interviewed, Kate was the only former carer who suggested she could imagine a future in a care home where she might enjoy gentleness, patience and calming care. Kate did, however, qualify her position, recognising her own unique biography as one with a depth of experience of care home cultures. Kate argued humorously that ‘good’ care for her in a care home setting would require that her personhood and dignity were retained, stating: ‘I’m writing my own care plan! Nobody is feeding me porridge and orange squash for breakfast, and I’m not wearing anybody else’s knickers!’

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Seeing Ourselves on Screen: Media Representations of Carers and Care Homes While care facilities take many forms and become home to individuals at different stages of the life course for multiple reasons, media discourses about the care home in Britain and elsewhere have become intertwined and inseparable from representations of dementia and of care as cruelty. The insidiousness of this representation can be traced within the conversations we had with carers. We explored above, for example, Claire’s imagining of a future life in a care home, one which was enmeshed with fears that her personhood might be stripped away by dementia and one in which she was at the mercy of care staff. Swinnen and Schweda (2015) suggest that the concept of dementia and the care home is ‘no longer limited to expert biomedical discourses, but gets integrated into public imagination and popular culture’ (10), labelling this phenomenon a cultural ‘dementia boom’. The increasing televisual, filmic and newspaper focus on what happens behind the ‘closed doors’6 of care homes in recent years has boosted public anxieties about the quality of care (Lloyd et  al. 2014; Meenan et  al. 2015; Cooper et al. 2018). As we explored in Chap. 3, documentary and newspaper exposés of institutional abuse within care home settings have become an increasing feature of the contemporary mediascape. Liebing (2015, 283) holds that ‘since negligence found in care facilities is a common topic: dementia patients, in popular accounts live in an apocalyptic world in need of advocacy’. This is a view borne out in popular discourses of care particularly in the case of documentary exposés such as the BBC’s Panorama, in which care workers and nurses are routinely represented as cruel and abusive. In our conversations with current and former care workers, almost everyone mentioned the Panorama documentaries as examples of the negative representation of care work in the media. As we explored above, carers shared examples of bad practice and understandings of abuse in their interviews. Recognising and acknowledging that abuse does happen in care homes, the carers we interviewed for this project were saddened by the cases made public in the media. Their responses to documentary exposés echo the findings of Manthorpe et al.’s (2016) longitudinal study of 6  Behind Closed Doors: Elderly Care Exposed was the name of the 2014 BBC Panorama documentary which uncovered abuse at a number of different care homes in England.

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care worker responses to Panorama, arguing that such negative portrayals of care homes and carers have ‘an accumulative and unjustifiably negative effect on the public’s view of the sector’ (9). Those we interviewed were concerned about the lasting damage done to the reputation of those involved in the caring profession by this type of reporting. Jessica explained: ‘If you’re going to go into care work now, what you think of really is what you’re being shown on the TV. […] They’ve got a bad reputation now, really. It’s [because of] Panorama’ (interview with the authors, August 2017). Documentaries like Panorama focus on exposing cultures of abuse within care homes using undercover investigative journalistic methods, including the use of hidden cameras. In Panorama’s Undercover Elderly Care (2012) a concerned daughter installed a hidden camera in her mother’s bedroom in a care home and captured the prolonged abuse of her elderly mother. As we explored in Chap. 3, in Panorama’s Behind Closed Doors: Elderly Care Exposed (2014) journalists went undercover in nursing homes in the southwest of England and recorded instances of cruelty and abuse using a camera hidden on their uniform. The use and ethics of hidden cameras and undercover journalistic work are widely deliberated (Lee-­ Wright 2010). Whilst some argue that the use of covert tactics is the only way to document and expose hidden behaviours, others maintain that undercover surveillance demeans the work of serious investigative journalism (Lee-Wright 2010, 37). In the wake of documentary exposés of abuse in care homes the topic of covert surveillance in care settings continues to be much debated (cf. Manthorpe et al. 2016). In the UK individual care home providers have their own policies surrounding the installation and use of hidden recording equipment in care homes. The Care Quality Commission (CQC) website urges those who are considering the use of hidden cameras to discuss their concerns with the provider in advance, to seek permission of the resident and to obtain legal advice before proceeding (2019 online). Whilst those we interviewed did not report that they had any first-hand experience of covert surveillance in the homes that they had worked in, like the respondents in Manthorpe et al.’s (2016) study, most were in support of the use of cameras to expose cases of abuse.7 In our conversations with carers, many viewed hidden cameras as a type of digital advocate for older people, who 7  See Hannah’s autoethnography in Chap. 2 which explores her fears around covert recording in the care homes she worked in.

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might lack the agency or mental capacity to report poor treatment or abuse themselves. This chimes with Liebing’s assertion above, furthering a view of care home residents as powerless and in need of advocacy. Claire argued: Where they’ve got hidden cameras in the room, they pick up on the abuse of the elderly. There’s certainly the potential for it. Because they’re not in the position to report back, are they, the elderly? (Interview with the authors, July 2017)

Whilst many care home residents are indeed without agency and at the mercy of those paid to care for them, these types of narrative serve to propagate misleading imaginings of a homogenous old age in the care home setting. It links to discourses of old age as a time of vulnerability and a time to fear, and furthers the image of the care home as ‘contemporary “gulags,” sites of increasing use of chemical restraints, places of abuse and violence, and locations of tragedies that reveal high levels of neglect’ (Chivers 2015, 34–35). Ouellette (cited in McCarthy 2015, 27) argues that like the documentary exposé, ‘reality genres often today serve a neoliberal cultural agenda that outsources the states’ social functions (e.g., policing and social welfare)’. The interconnection between popular media forms and the regulation of social functions once undertaken by the state was one acknowledged by those we interviewed. Jack explored the politics of representation in his interview, stating: If the [abuser] were from a different ethnic background [the media will] push it even harder. And on it goes. They’re just looking for as many boxes as possible, to get everybody riled up. That gets them buying papers and then they want to follow the story. Ranting like, ‘Is there more to this?’ and they’ll buy the next day’s [paper]. And the next day’s. (Interview with the authors, June 2017)

Like Jack, recognising that scandalous newspaper headlines and documentary film titles undoubtedly attract attention, Emily questioned the paucity of positive representations of care workers: I know negative always gets the big ratings and all the rest of it because people like to go, ‘Oh, this is terrible’, but why is there never the flip side of

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that? There are very, very good people that care for people in an exceptional way. (Interview with the authors, June 2017)

In her interview Emily explained that care work is seen as hard, dirty work, both in popular media representations of the profession and in real life. Building on Everett Hughes’ concept of ‘dirty work’, Gilleard and Higgs (2017, 234) hold that popular discourses surrounding care staff depict them as ‘pervasively dirty, because of workers’ continual contact with physical, moral, or socially tainted “dirt”’. With increasing threats to self-regard and reputation when care workers are depicted negatively in the media, ‘the abjection and the failure that shape the social imaginary of the fourth age within the nursing home envelop not just the residents but relatives and staff as well, leaving each group of stakeholders depressed, demoralized, and dissatisfied’ (Gilleard and Higgs 2017, 236). With the impact of documentary and newspaper coverage of care home abuse stories still looming large nearly five years later, the carers we spoke to for this project struggled to offer examples of times where they had seen care workers represented positively in the media (on screen and in print). Many mentioned watching Grandpa’s Great Escape over the Christmas period, but instead of finding the text a ‘heart-warming comedy drama’ (BBC online 2017), current and former carers questioned the mode of representation in which the carers-as-prison-guard trope was rolled out once again. Whilst examples of positive fictional representations of care workers remained elusive for those we interviewed, many explored examples of documentaries or television dramas in which those with dementia, those caring for a loved one with the disease or the care home environment was featured (both positively and negatively). Alice, for example, in her interview explored how representations of the dementia in the media impact the public’s perception of the condition and of the care home as a destination for later life. She explained: I think, personally, that there’s a fear that everybody, when they get to a certain age with dementia, that they’re going in [to a nursing home] and they don’t want to. Dementia has played a big part in the last couple of years and there’s been a lot publicised on the TV, and I think a lot of people think ‘If I get that, shoot me’. (Interview with the authors, August 2017)

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Alice went on to explore representations of dementia in the media that were more positive, ones that for her offered a more realistic vision of living with the condition. She noted: I think that some of the programmes have been positive towards dementia […] I watched a programme with a husband and wife who split up because they thought it would be better for her, because he was getting [worse]… Then they got back together to live. That was lovely. That to me was more realistic. (Interview with the authors, August 2017)

In addition to exploring her recollections of watching the 1990s BBC television series Waiting for God, in her interview Kate talked animatedly about the 2017 Channel 4 series Old People’s Home for Four Year Olds. Based on research by Heyman et  al. (2011) on intergenerational day care, the programme followed a social experiment where a nursery was set up within a care home on the outskirts of Bristol, UK. The series was met with popular acclaim and has had a lasting impact on care home provision in the region. The residents and children featured in the series remained in contact after filming had finished, and the trust which took part in the programme ‘is investigating ways to increase socialisation of the residents within surrounding communities. And plans are even in place to build a permanent nursery in one of the trust’s homes’ (Stewart and Johnson 2017, online). Kate, who followed the series with delight, explained: It’s amazing. […] Basically, by the end of the first week they were integrated and they got people who wouldn’t get up out of a chair… One old man, he was a grumpy old bugger, wouldn’t do this or that, by the end he was rolling around on the floor with them laughing. […] One old lady had poor mobility for so many years and they did an egg and spoon race, and she ran. They revisited them at Christmas and did a Christmas carol service, and oh my God. […] I think it’s marvellous. (Interview with the authors, July 2017)

Old People’s Home for Four Year Olds, for several of our participants, was thus an example of the care home shown in a more positive light, an illustration of the lasting impact of intergenerational exchange and a programme which offered a more positive imagining of life in the care home for older people. With our focus in mind, however, a cause for consternation was that the carers who worked in the care home were curiously absent from screen. Kate acknowledged, ‘You don’t see them at all. […]

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It’s the lady that looks after the children that’s shown’ (interview with the authors, July 2017). As well as the nursery manager, the series featured cut-away interviews with medical professionals who conducted physiological and psychological measurements of the care home residents before, during and after their interactions with the children. The privileging of doctors and consultants’ medical opinions in this programme perhaps parallels life as a care worker in the care home environment, an enduring legacy of the nursing home hierarchy (MacLean 2007). More than this, however, representations such as these continue to devalue and make invisible the work done by carers, a revealing omission in a show that sought to eschew fourth-age imaginings of later life in the care home and one that had the potential to shine a light on the work that carers do. Overall then, when asked how their role and the homes they had worked in were represented in the media, those we spoke to offered a complex picture in which the lasting impact of documentary exposés, social media and newspaper reporting of care home abuse was keenly felt. Our conversations with current and former carers echoed the findings of the previous chapter: that in the British media care workers are found depicted as either comedic and ineffectual, or cruel and abusive, or largely invisible.

Conclusion Conversations with current and former carers illuminate the diversity of experience in what it means to ‘do’ care work. Where we set out to explore what carers themselves think about the way their work and those they care for are represented in the media, the interviews quickly became a conversation about so much more than simply representation. Our conversations traversed ideas about age and gender, aptitude and attitude, the economics of paid care work, the physical and emotional labour of the role, and beyond. This chapter adds depth and nuance to studies which have long explored the lived experiences of those who work as paid carers across the world (cf. Chivers and Kriebernegg 2017; Diamond 1986; Farmer 1996; Gubrium 1975; Henderson and Vesperi 1995). As is common with ageing studies research, different conceptualisations of time emerged as important in this project (Jennings and Krainitzki 2015, 182), structuring the reflections of those we interviewed in multiple ways. In thinking through how the responsibilities, tasks and training

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associated with care work have developed over time, for example, chronological understandings of time and ageing were brought to the fore. In other moments, in the space of the interview, carers shared memories which meandered back and forth temporally. Carers shared their memories of past and present paid care work, of choosing and visiting care homes for their own relatives, of seeing themselves represented on screen, and at other times explored their feelings about the future of care, both as an industry as a whole and the home as a possible location for themselves in their deep old age (Featherstone and Hepworth 1989). Here the concept of kairotic time, which sees time as a cyclical ‘interrelation of the past, present and future’ (Baars 2012, 151), was pivotal and highlights the utility of ageing studies perspectives which favour an understanding of time as non-linear. Through moving backwards and forwards in time, by thinking through personal and professional experiences of care work, each interview was infused with affective reminiscences of care work (England 2005; Twigg 2000). The emotional labour of care work (Hochschild 1983) and physical and affective legacies of performing care were explored throughout our conversations with current and former carers. The affective (cf. Clough and Halley 2007) was found most poignantly in participants’ explorations of what it means or meant to be a ‘good’ carer, juxtaposed with reminiscences of encounters and representations of ‘bad’ care. Many times, our conversations with carers prompted a visceral nostalgia and brought to the fore many memories of our own time as care workers, similarly framed around ideas of ‘good’ and ‘bad’ care. It often took several days for the authors to work through the aftermath of a long interview, though the practice of autoethnographic reflection served as a salve and highlighted the importance of the researcher as a ‘vulnerable self’ (Ellis 1999, 699). The following and final chapter works to bring together the arguments made throughout this book. It argues that the media representation of carers and care homes are formulaic and erroneous, and that current and former carers have detailed, emotional accounts which add a much-needed dimension to the narrative about care, paid caregivers and older people in the UK. This book sits as a case study in the affective dimension of care and argues for the validity and necessity of carers’ voices as an antidote to current discourses of care as cruelty. It suggests that caring for old people will improve if we empower and value carers for their increasingly essential support to society.

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Meenan, Helen, et al. eds. 2015. Towards Human Rights in Residential Care for Older Persons: International Perspectives. London: Routledge. Morley, John E., et  al. 2013. Nursing Home Care. New  York: McGraw-Hill Education. Mughal, Farida. 2019. Dark Side of Nursing Training: Memoir of a Whistleblower. Independently: Published. National Health Service. 2017. About Dementia: Dementia Guide [online]. Available at: https://www.nhs.uk/conditions/dementia/about/ Nizzi, Maria-Christine. 2015. Representation of Alzheimer’s Disease Among Non-specialists: A Cross-cultural Study Between Paris and Boston. In Popularising Dementia: Public Expressions and Representations of Forgetfulness (2015), ed. Aagje Swinnen and Mark Schweda, 89–108. Bielefeld: Transcript. Office for National Statistics. 2018. Employee Earnings in the UK  – 2018 [online]. Available at: https://www.ons.gov.uk/employmentandlabour­ market/peopleinwork/earningsandworkinghours/bulletins/annualsurveyof hoursandearnings/2018 Prince, Martin, et  al. 2013. Dementia UK, Alzheimer’s Society UK [online]. Available at: http://eprints.lse.ac.uk/59437/1/Dementia_UK_Second_edition_-_Overview.pdf Robertson, Ann. 1990. The Politics of Alzheimer’s Disease: A Case Study in Apocalyptic Demography. International Journal of Health Services 20 (3): 429–442. Roberts, Gwilym W., and Andrew Machon. 2015. Appreciative Healthcare Practice: A Guide to Compassionate Person-Centred Care. Keswick: M&K Publishing. Sandberg, Lynn, and Barbara Marshall. 2017. Queering Aging Futures. Societies 7 (21): 4–11. Skills for Care. 2018. The State of the Adult Social Care Sector and Workforce in England, September 2018 [online]. Available at: https://www.skillsforcare. org.uk/NMDS-SC-intelligence/Workforce-intelligence/documents/State-ofthe-adult-social-care-sector/The-state-of-the-adult-social-care-sector-andworkforce-2018.pdf Stewart, Melrose, and Malcolm Johnson. 2017. What Happened When We Introduced Four-year-olds to an Old People’s Home? The Conversation [online]. Available at: https://theconversation.com/what-happened-when-weintroduced-four-year-olds-to-an-old-peoples-home-82164 Swinnen, Aagje, and Mark Schweda, eds. 2015. Popularising Dementia: Public Expressions and Representations of Forgetfulness. Bielefeld: Transcript. Thomasma, David C., et  al., eds. 2008. Asking to Die: Inside the Dutch Debate About Euthanasia. New York: Kluwer Academic Publishers. Twigg, Julia. 2000. Carework as a Form of Bodywork. Ageing & Society 20 (4): 389–411.

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———. 2009. Clothing, Identity and the Embodiment of Age. In Ageing and Identity: A Postmodern Dialogue, ed. Jason L.  Powell and Tony Gilbert, 93–104. New York: Nova Science Publishers. Wan, Thomas T.H., et al. 2010. Improving the Quality of Care in Nursing Homes: An Evidence Based Approach. Baltimore: John Hopkins University Press. White, Becky C. 1994. Competence to Consent. Washington, DC: Georgetown University Press. Woodhead, Erin L., et al. 2014. Stress, Social Support, and Burnout among Long-­ Term Care Nursing Staff. Journal of Applied Gerontology 35 (1): 84–105.

CHAPTER 5

Concluding Thoughts

Abstract  This chapter argues that carers’ experiences of ‘doing’ care in the British care home environment are multiple and complex. It proposes that dominant modes of portrayal of carers and care homes in the British media as fools or monsters is detrimental to the value placed upon care work by society. It examines the importance of conceptualisations of time within care home cultures and adds to current understandings of the ‘cult of time’. It states that to improve the quality of care we must rethink questions of value and resource so that there is time to care. It highlights the relevance of the findings of this book for the future development of media training in and about care homes and offers areas for prospective research. Keywords  Care homes • Care work • Interviews • Autoethnography • Textual analysis • Media representation • Time

Introduction The aim of this book was to provide a much-needed space for the experiences of real carers to augment and challenge media portrayals of their roles and the homes they work in, working ‘with’ participants rather than carrying out research ‘on’ care workers and care homes. The voices of current and former carers are central to this book, both in the autoethnographic reflections presented in Chap. 2 and in the conversations with carers found in Chap. 4. Degnan (2015) has argued that collaborative © The Author(s) 2020 H. Grist, R. Jennings, Carers, Care Homes and the British Media, https://doi.org/10.1007/978-3-030-35768-9_5

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research such as this unsettles ‘traditional hierarchies of expertise and knowledge creation’ (110). This approach has resulted in a unique perspective on British care homes and care worker experiences, which have, until now, remained largely concealed.1 The habitus and cultural capital (Bourdieu 1984) associated with two ageing studies scholars with first-hand experiences in the care home sector thus allowed us to approach the care home and care work not as discrete theoretical or conceptual entities to be objectively studied, but instead offered an opportunity to use qualitative approaches to equalise the voices of researcher and participant. Using autoethnographic methods together with in-depth qualitative interviews allowed lived experiences of care assistants to permeate and work in dialogue with the media representations discussed in Chap. 3. We thus revealed a complex picture of what it means to ‘do’ care in Britain and exposed understandings of care work practices and of care homes as institutions which are obscured in the public imagination. The practices and depictions of care work captured in this book span nearly 30 years. At the outset of this project we anticipated documenting complementary and contrasting experiences of doing care work in Britain, though what emerged were profoundly similar narratives of care work separated by three decades. This suggests that although the care home sector has certainly changed dramatically over the years in terms of economic and policy directives (cf. Means and Smith 1998; Peace 2003), there remain unifying and common concerns for current and former carers. In this book the narrative themes that emerged most powerfully included issues surrounding training needs for performing care work and developing the emotional skills for ‘being’ a care worker, especially in the wake of problematic media portrayals of care as cruelty. Despite exploring the recollections of carers who worked in the late 1980s and early 1990s notions of good (and bad) practice in the performance of care work were often analogous with the reflections of those employed as care workers today.

Time to Care We found that good and bad care is always conceived around the notion of time. Conceptualisations of time as a scarce and valuable resource in the care home environment emerged strongly throughout the narratives of  See Chap. 1 for an overview of current care home research and disciplinary approaches.

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current and former carers and in the fictional representations of care work on screen. From the importance of mealtimes (see Hannah’s autoethnography in Chap. 2) to rushing residents through personal care tasks (see Chap. 4) the experiences of current and former carers confirmed the arguments of previous research (cf. Henderson 1995) that time is an influential commodity in the care home environment. Current and former carers argued forcefully that to do their jobs well, it is vital to have more resource within the care home environment. Low staffing levels (a consistent experience across the 30-year period we explored in this book) were seen to have a significant impact on the quality of care that care workers are able to offer. In tending to physical care needs such as continence care and hygiene, carers reported that tending to the psychosocial needs of care home residents is often relegated. Time structured the conversations with all carers, though some differences in the experiences of the time taken or allowed to perform care work did emerge. Kate’s remembering of former colleagues who risked being reprimanded for ‘taking too long’ bathing and blow-drying residents’ hair, for example, can be contrasted with Ros’ autoethnographic reflections on working night shifts in the early 1990s in which she recalled having more time to spend with residents. This book therefore adds detail to the concept of the ‘cult of time’ within care homes. We argue that carers often find ways to subvert care home cultures around time, making opportunities to spend time with residents in multiple ways which sometimes come at a personal cost. The focus on time that emerged throughout the research process forms the subtitle to this book: Time to Care. We argue that finding time to care has always been problematic for those employed as paid care workers in British care homes, and that care work is woefully under-resourced. A dearth of time makes for fertile ground for instances of malpractice and abuse to occur when care workers experience threats to their own moral identities and personhood, and when the psychosocial needs of residents go unmet by carers tasked with an impossible workload. Whilst policy and economic directives have an important role to play in the creation and persistence of this inimical environment, when instances of abuse are uncovered and made public, we contend that care workers themselves end up as scapegoats in the media for an underfunded and undervalued system of care.

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The Legacy of Media Representations of Care Work and Care Homes We argue that the longevity of media representations of carers as cruel or ineffectual has a powerful impact on the value placed on care both by society and by care workers themselves. One of the most enduring legacies of working in an undervalued care home for those we interviewed for this book was that they could rarely imagine their own old age spent within a care home, and that choosing care homes for loved ones is, as a consequence of first-hand experiences, a difficult process. In the media depictions of care homes as prisons to be escaped from and of care workers as guards, parallel escape narratives further the depiction of the care home as a place to fear, a place where unwanted relatives are interred, policed by uncaring staff. In his eponymous ‘great escape’ Grandpa leads his fellow ‘prisoners’ to break free from Twilight Towers, and protagonist Mrs Caldicot leads her fellow residents in an uprising that results in her taking over the management of the home. Unlike the transformation narratives found in texts like Grandpa’s Great Escape and Mrs Caldicot’s Cabbage Wars, where regimes are overthrown, homes are transformed and residents encounter a better quality of life as a result, current and former carers struggled to imagine any such positive care home futures. When care workers are represented as either fools or monsters in news media texts, we contend that these portrayals infiltrate fictional narratives, depictions which construct care homes as institutions with varying degrees of abuse, control, malpractice and stupidity. These constructions position care workers along a spectrum which ranges from benign ignorance and micro-aggressions to full on assault. Whilst we acknowledge that abuse in care homes does happen, we argue that the impact of this focus on malpractice in care homes is that, in the public imagination and in the imagination of current and former care workers themselves, the care home becomes either a depressing or a terrifying place to consider placing yourself or a loved one into. As we argued at the outset of this book (see Chap. 1) the growing importance of care homes and care workers cannot continue to be undervalued if we are going to meet the demands of a rapidly ageing society in a holistic, empathetic and compassionate way. Faced with uncertainty in the face of increasing political and economic turmoil in contemporary Britain, it is important to continue to question and critique the systems and structures that influence the provision of elderly care in Britain.

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Crucial to this is the ongoing interrogation of popular media texts and news media constructions about ageing, care work and care homes.

Looking to the Future: Implications for Policy and Practice As we have demonstrated throughout this book, class, gender, age and race have a powerful impact on how carers perform care work and how they encounter and process their portrayals on screen and in print. Instead of viewing care workers as a homogenous group, we argue that care home managers, policy makers and media producers must recognise the intersectionality which shapes the face of contemporary care work. One way to improve the quality of care in British care homes and to improve public perceptions of care work more generally, we argue, is to draw upon the rich resource already existing within British care homes: experienced, hardworking, empathetic care workers. The benefits of intergenerational exchange are highlighted in this book, both in terms of carer-to-carer role modelling and in terms of wider development of care work practices. We suggest that opportunities for intergenerational sharing of best practice should be encouraged and promoted at all levels. This was a small study which drew upon the reflections and experiences of a select sample of current and former carers, distinctive in their socioeconomic, educational and demographic backgrounds. The scale of this study has resultant limitations, and as outlined in Chap. 1, this study makes no claims for replicability or representativeness. It does not claim to account for the experiences of all carers in British care homes, but it does offer a potential methodological approach which privileges the voices of current and former carers at the centre of debates on care work. Significantly, whilst representing the demographic makeup of care workers in the homes we worked in and those our carers were employed in, and mirroring the focus on gender and care work in previous research (Cancian and Oliker 2000; Harrington Meyer 2002), this study featured the views and experiences of very few male care workers. Future studies might enhance the growing body of scholarship on care and masculinity (cf. Harrington Meyer 2002; Cameron and Moss 2007; Hanlon 2012) by exploring more closely the experiences of male care workers in the British care home environment.

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Similarly, as we explored in Chap. 1, there is a distinctive ‘whiteness’ in our sample. As noted above, this means we can make no claims for representativeness, nor do we wish to. Whilst the Panorama documentary exposés and other media texts we examined in Chap. 3 offer important and intriguing insights into the narrative constructions of race and care work, we have been unable to treat the topic in as much depth as is necessary in this short book. Whilst other studies explore the relationship between race and care work from economic and sociocultural perspectives (cf. Duffy 2011; Treadwell 2019) we wonder how far media portrayals of non-white care workers align with the lived experiences of real care workers from diverse ethnic backgrounds. This forms an important avenue for future research. It is now well-documented that Brexit will have a significant impact on the health and social care sector (Baird and McKenna 2018; Dolton et al. 2018; Esler 2019). With EU nationals currently comprising an estimated 104,000 of those working in care in Britain (Age UK 2019, online) the uncertainty around employment laws and ‘freedom of movement’ regulations post-Brexit will compound the health and social care crisis in Britain. Studies are already emerging which analyse the media discourses which surround Brexit (cf. Gorodnichenko et  al. 2018; Ridge-Newman et  al. 2018), and others focus on the rise of racism and xenophobia in its wake (cf. Rzepnikowska 2018; Wilson 2016). As noted above, there has not been space in this short book to examine in detail the media treatment of care work performed by EU nationals, though it is an important topic to pursue. We propose that an important area for future research will be to document and explore the experiences of EU nationals who work in British care homes to better understand the impact of Brexit and associated media discourses on real care workers and the homes they work in. Throughout this book we have argued that the media portrayal of care homes and care workers obscures the complexity of care home cultures in Britain. We have contended that the legacy of the ‘care as cruelty’ narrative both is detrimental to those who work in care homes and fuels negative public perceptions of care workers, care homes and old age. In these depictions, all three are respectively constructed as people, spaces and states of being that should be feared. Rather than embracing the potential energies and continued contributions of the majority of older people in society, older people are ‘lumped together’ in popular media representations as a new modern ‘folk devil’ (Jennings 2015) and represented as little more than a net drain on public resources if they become frailer and

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in need of support. When older people are viewed in such negative terms then there are knock-on implications for the role and status of their paid carers. Thus, while there is a growing demand in western societies for residential and nursing care for older people, media reports and experiential accounts documented in this book suggest that in many cases, care workers are struggling to provide the level of care that is expected by the Care Quality Commission, let alone the individualised and dignified care essential to older wellbeing (Twigg et al. 2011). In order to challenge embedded cultural perceptions of ageing and future care needs as a terrifying spectre, a significant implication of this study surrounds the importance of developing more holistic approaches to media training. Whilst exposing instances of poor practice and abuse remains an important function of investigative journalism in neoliberal society, we suggest that media producers should seek out current and former care workers, to enter care homes and try to understand them and their staff in all their complexity. We argue that media producers can do better and that their representations of carers and care homes can go far beyond the staid-yet-insidious tropes of carers as fools or monsters. We propose that care homes devise and implement active public relations and media engagement strategies, wherein examples of excellent practice, a culture of openness and transparency, and the human complexities of care work can be shared and promoted. We suggest that care homes seek to reverse the dominant model of engagement between care home and media, wherein care homes are more often the target for sensational stories rather than the source of positive narratives about the work that is carried out behind their doors. This would mean care homes and their staff might counter the impacts of negative representations in the popular media with real, lived experiences of life and work in a care home, selected and promoted on their own terms. Policy makers and care home managers are already proponents of such strategies (cf. Neville 2013), and the use of social media to enhance the reach and reputation of care homes is already having some success in care homes in England. The Anchor Hanover Group, for example, is one of the largest providers of long-term care for over 55 years olds in England. With nearly 5000 followers, the Anchor Hanover Group Facebook page draws interaction from staff, residents’ families and members of the public. The site regularly features posts and pictures of care workers and residents engaged in activities, blog posts written by care staff on a range of topics and links to news stories affecting the care home sector. Through rich

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multimedia and multi-stakeholder engagement, the Anchor Hanover Group Facebook page is but one example of the power of social media, which offers an insight into the lives of care staff, care home residents and their families, an insight which works to counteract dominant negative representations of the care home and care work. The success of approaches to media engagement like those of the Anchor Hanover Group offers valuable exposure of the excellent care practices that go on every day across the care home sector in Britain. We are advocating for a collaborative approach to the media treatment of the care home sector in which policy makers, care home managers, media outlets, care workers and care home residents ‘work together to think about many different ways in which long-term residential care in late life could become something desirable rather than necessary’ (Chivers and Kriebernegg 2018, 19). This book has brought together the voices of current and former carers and autoethnographic reflections on ‘doing care’ work alongside a detailed media analysis to critique and challenge depictions of paid care work in the British media. The book has developed a picture of ‘vocations of caring’, which we see as deep commitments to provide appropriate acts of caring based in understandings of the diversities of ageing and care work as intersectional elements of individual identities. This book represents a small contribution to the developing canon on care homes, but comes at a crucial time, when a crisis in care looms ever large. No longer can we afford to allow negative representations of care work and care homes to dominate the popular cultural imagination and, in so doing, undervalue the important contribution care workers make to the quality of life for thousands of older people on a daily basis. It is time to care more and think more carefully about questions of representation. It is time to work together to establish carer-centred perspectives in relation to old age that might be drawn upon to generate a more mutually satisfying, fair and compassionate relationship between older people and the people who are paid to care for them in Britain today.

References Age UK. 2019. Brexit Could Worsen the Crisis in Care for Older People [online]. Available at: https://www.ageuk.org.uk/our-impact/campaigning/care-incrisis/brexit/ Baird, Becky, and Helen McKenna. 2018. Brexit: The Implications for Health and Social Care [online]. Available at: https://www.kingsfund.org.uk/publications/articles/brexit-implications-health-social-care

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Bourdieu, Pierre. 1984. Distinction. London: Routledge. Cameron, Claire, and Peter Moss. 2007. Care Work in Europe: Current Understandings and Future Directions. Oxon: Routledge. Cancian, Francesca M., and Stacey J. Oliker. 2000. Caring and Gender. Walnut Creek: AltaMira Press. Chivers, Sally, and Ulla Kriebernegg, eds. 2018. Care Home Stories: Ageing, Disability, and Long-Term Residential Care. Bielefeld: Transcript. Degnan, Catherine. 2015. Ethnographies of Ageing. In Routledge Handbook of Cultural Gerontology, ed. Julia Twigg and Wendy Martin, 105–112. Oxon: Routledge. Dolton, Peter, et al. 2018. Brexit and the Health and Social Care Workforce in the UK [online]. Available at: https://www.nhsemployers.org/-/media/ Employers/Documents/Cavendish-Coalition/NIESR-Report-Brexit-Healthand-Social-Care-Workforce.pdf Duffy, Mignon. 2011. Making Care Count: A Century of Gender, Race and Paid Care Work. Brunswick: Rutgers University Press. Esler, Gavin. 2019. Brexit Without the Bullshit. Kingston-upon-Thames: Canbury Press. Gorodnichenko, Yuriy, et al. 2018. Social Media, Sentiment and Public Opinions: Evidence from #Brexit and #USElection. National Bureau of Economic Research [online]. Available at: https://rahwebdav.swan.ac.uk/repec/pdf/ wp2018-01.pdf Hanlon, Niall. 2012. Masculinities, Care and Equality: Identity and Nurture in Men’s Lives. Basingstoke: Palgrave Macmillan. Harrington Meyer, Madonna. 2002. Care Work: Gender, Class, and the Welfare State. New York: Routledge. Henderson, J. Neil. 1995. The Culture of Care in a Nursing Home: Effects of a Medicalised Model of Long-Term Care. In The Culture of Long-Term Care: Nursing Home Ethnography, ed. J.  Neil Henderson and Maria D.  Vesperi, 37–54. Westport: Bergin and Garvey. Jennings, Ros. 2015. Popular Music and Ageing. In Routledge Handbook of Cultural Gerontology, ed. Julia Twigg and Wendy Martin, 77–84. Oxon: Routledge. Means, Robin, and Randall Smith. 1998. From Poor Law to Community Care: The Development of Welfare Services for Elderly People 1939–1971. Bristol: Policy Press. Neville, Ellie. 2013. Care Homes Advised to Harness the Power of Social Media. Carehome.co.uk [online]. Available at: https://www.carehome.co.uk/news/article.cfm/id/1559611/care-homes-urged-to-harness-the-power-of-social-media Peace, Sheila M. 2003. The Development of Residential and Nursing Home Care in the United Kingdom. In End of Life in Care Homes: A Palliative Approach, ed. Jeanne Samson Katz and Sheila M.  Peace, 15–42. Oxford: Oxford University Press.

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Ridge-Newman, Anthony, et  al., eds. 2018. Reporting the Road to Brexit: International Media and the EU Referendum 2016. Basingstoke: Palgrave Macmillan. Rzepnikowska, Alina. 2018. Racism and Xenophobia Experienced by Polish Migrants in the UK before and after Brexit Vote. Journal of Ethnic and Migration Studies 45 (1): 61–77. Treadwell, Henrie M. 2019. Wages and Women in Health Care: The Race and Gender Gap. American Journal of Public Health 109 (2): 208–209. Twigg, Julia, et al. 2011. Conceptualising Body Work in Health and Social Care. Sociology of Health & Illness 33 (2): 171–188. Wilson, Helen F. 2016. Brexit: On the Rise of ‘(in)tolerance.’ Environment and Planning D: Society and Space [online]. Available at: http://societyandspace. org/2016/11/21/brexit-on-the-rise-of-intolerance

Index1

A Abel, Elizabeth K., 70 Abuse definitions of, 74 emotional, 27 institutional, 86 physical, 27, 53 Affect, 8, 32–34, 58, 81, 85 Age/aged/ageing by culture, vii as decline, 81 by disability, 1n1 fear of, 2 fourth age, 2, 44, 55, 81, 85, 89, 91 studies, 1n1, 7, 11, 12, 91, 92, 100 successfully, 2, 51, 52 thinking with age, 10 third age, 2, 84, 85 Anchor Hanover Group, 105, 106 Autoethnography, viii, 4, 5, 7, 8, 10, 11, 17–37, 65, 68, 71–73, 76, 79, 87n7, 101 collaborative, 8

B Baars, Jan, 55, 92 BBC, 11, 40–42, 45, 86, 86n6, 89, 90 Best Exotic Marigold Hotel (Blueprint Pictures), 41, 44, 51–53 Bochner, Arthur P., 9 Body work, 52, 53 Bone, Anna E., 6, 80 Bourdieu, Pierre, 7, 9, 46, 47, 79, 100 Brexit, 104 Britain, vii, 1, 2, 4–7, 6n2, 12, 45, 51–53, 55, 56, 59, 66, 86, 100, 102, 104, 106 C Cancian, Francesca N., 6, 7, 58, 72, 103 Care home accountability, 74 cultures, 75, 78–80, 85, 101, 104 domiciliary care, 82 fear of, 47, 58

 Note: Page numbers followed by ‘n’ refer to notes.

1

© The Author(s) 2020 H. Grist, R. Jennings, Carers, Care Homes and the British Media, https://doi.org/10.1007/978-3-030-35768-9

109

110 

INDEX

Care home (cont.) funding, 5 and hidden cameras, 87 managers, 25, 27, 43, 48, 59, 73, 75, 103, 105, 106 outsourcing of, 51 power/hierarchies, 91 as prisons, 56, 57, 102 research on, 3, 57, 99, 100n1, 103 staffing levels and turnover, 71 Care Quality Commission (CQC), 28, 71, 72, 74, 74n3, 75, 87, 105 Care workers/carers burnout, 78 as fools, 105 invisibility, 2 and mentors/role models, 20, 23–25, 50 as monsters, 40–60 need for, 6, 80 professional identity, 11, 59 as scapegoats, 41 support for, 80 training, 6n3, 11, 42, 78, 79 vocations of care, 10, 12, 106 Cavendish Review, the, 6, 6n3, 66–68 Centre for Women, Ageing and Media, vii, 28 Channel 4, 40, 90 Chivers, Sally, 2, 3, 44, 49, 51, 52, 85, 88, 91, 106 Ciafone, Amanda, 51, 52 Class, 68, 103 Colditz Story, The, 56 Cruikshank, Margaret, 2, 81 Cultural capital, 7, 35, 45–47, 79, 100 D Degnan, Catherine, 99 Deitering, Anne-Marie, 18

Dementia, 3, 5, 18, 19, 23, 29, 36, 41, 44, 54–56, 58, 59, 73, 78, 81–86, 89, 90 Demographic growth, 6 Diamond, Timothy, 3, 91 Dignitas, 84 Dirty work, 31, 52–54, 69, 89 Documentary and dementia, 89 exposés, 86–88, 91, 104 Drag, 36, 57 Dress, 22, 28, 35, 36, 77n4 Dunbar, Laura, 68 E Education, 7, 18, 25, 27, 34, 35, 46, 47 Ellis, Carolyn, 7, 9, 92 Emotion, 6, 10, 18, 27, 35, 36, 43, 50, 54, 80, 85, 91, 92, 100 affect, 85 England, Paula, 67, 68, 70, 71, 92 Escape, 46, 49, 50, 56, 58, 102 Ethics, 87 Euthanasia, 83, 84 F Facebook, 105, 106 Faeces, 20–22, 31, 37, 50 Farmer, Bonnie C., 75, 91 Feminism, vii, 3, 8, 35, 36 Foner, Nancy, 76 Foucault, Michel, 44, 57 Frank, Arthur W., 10, 48 Froggatt, Katherine, 4 G Gender, 52, 57, 58, 68, 68n2, 82, 91, 103 Gentleman, Amelia, 45

 INDEX 

Gilleard, Chris, 2, 40, 44–46, 50, 51, 55, 78, 81, 89 Google, 41, 42 Grandpa’s Great Escape (BBC), 41, 44, 46, 48, 49, 55–58, 89, 102 Grist, Hannah, 10 Gubrium, Jaber F., 3, 76, 91 Gullette, Margaret Morganroth, 1n1, 2, 81 H Habitus, 7, 9, 35, 46, 47, 79, 100 Healthcare studies, 74 Henderson, J. Neil, 3, 76, 77, 91, 101 Heyman, Janna, 90 Higgs, Paul, 2, 40, 44–46, 50, 51, 55, 78, 81, 89 Hillman, Alexandra, 81, 82 Hochschild, Arlie, 92 Hold the Sunset (BBC), 45 Howes, Candice, 70 Hughes, Everett, 89 Hughes, Heidi, 44, 47 I Intergenerational, 8, 10, 90, 103 Intersectionality, 103 J Jennings, Ros, 8, 10, 55, 56, 91, 104 Johnstone, Megan-Jane, 85 K Katz, Stephen, 2, 47, 81 Kriebernegg, Ulla, 2, 3, 44, 49, 91, 106

111

L Latimer, Joanna, 81, 82 Liebing, Annette, 86, 88 M Manthorpe, Jill, 86, 87 Media contexts, 35, 40, 41 impacts, 89 representation, 5, 7, 8, 10, 66, 81, 86–92, 100, 102–104 studies, viii, 4, 12 training, 105 Memory, 2, 41–43, 54, 56, 59, 85 negative memory sphere, 41–43, 56, 59 Motivation extrinsic, 67, 68, 70 intrinsic, 71 Mrs Caldicot’s Cabbage Wars (Evolution Films), 41, 44, 46, 48–51, 53, 55, 57, 102 N National Health Service (NHS), 6 National Institute for Health Research, 6n2 National Living Wage, 66, 67 Nelson, Margaret K., 70 Night shifts, 18, 29, 32–34, 37, 68, 69, 101 Nizzi, Maria-Christine, 82n5 O Office for National Statistics, 66, 69 Old People’s Home for Four-Year Olds (Channel 4), 90 Oliker, Stacey J., 6, 7, 58, 72, 103 One Foot in the Grave (BBC), 45 Ouellette, Laurie, 88

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INDEX

P Panorama (BBC) Behind Closed Doors, 11, 53–54, 87 Undercover Elderly Care, 26, 87 Personhood loss of, 82 maintaining, 78 Post, Steven G., 85 Q Qualitative interviewing, 9 and ethics/anonymity, 9 R Race, 7, 52, 53, 68, 90, 103, 104 whiteness, 51, 104 Registered Nurse, 68, 69, 72 Representation in film, 11, 41, 51 in news media, 12, 41, 102 in television, 11, 41 Resistance/rebellion, 44–47, 50 S Schweda, Mark, 86 Skills for Care, 6, 71 Social media, 40, 91, 105, 106

Spry, Tami, 18 Swinnen, Aagje, 86 T Textual analysis, 4, 8 Thatcher, Margaret, 45 Thematic analysis, 9 Time to care, 10, 37, 100–101, 106 chronological, 56, 92 cult of, 77, 78, 101 kairotic, 92 Twigg, Julia, 3, 6, 52–54, 58, 69, 92, 105 U Urine, 19, 30, 31, 33, 37, 50, 56 V Vesperi, Maria D., 3, 91 W Waiting for God (BBC), 11, 43–49, 55, 56, 58, 90 Whaley, Ann, 84 Whistle-blowing, 74