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An ethic of care and sibling care in older age Marian Barnes

Delivered by Ingenta to: University of Brighton IP : 194.81.199.54 On: Thu, 21 Jun 2012 20:55:04 Copyright The Policy Press

Feminist care ethics emphasises the relational nature of care. This suggests the importance of understanding the different dynamics of care in different relational contexts.This article applies such a perspective to exploratory interviews with carers looking after siblings in older age.While some attention has been given to sibling care following the death of parents of people with learning difficulties and, to a lesser extent, those with enduring mental health problems, older sibling care can take place when siblings become ill, or when they have had close contact over a lifetime. Motivations to care are strongly embedded in family responsibility, but the precise meaning and consequences of this vary. Such relationships may not be more egalitarian than other familial caring relationships, although caregiving can bring siblings closer together.

Introduction The literature on feminist care ethics has made a significant contribution to the analysis of relationships through which care is given and received, including intimate personal relationships within families; friendships; and paid or professional caring relationships (Bowden, 1997; Kittay, 1999; Barnes, 2006, 2012; Brannelly, 2006). It has also been applied to thinking about ethical social relations with more distant others in the context of international relations and development (Held, 2006). Care ethics has developed far beyond its origins in Gilligan’s (1982) work, which challenged gendered assumptions about moral development, by naming a ‘different voice’ in which moral reasoning might be expressed. Gilligan identified the distinction between the application of abstract, universal principles to determining what was the ‘right’ or ‘just’ response to a moral dilemma, and an approach requiring exploration of the specific context before reaching a decision. This psychological approach to understanding moral reasoning has since been developed in diverse disciplinary contexts, in particular through the work of political philosophers such as Tronto (1993) and Sevenhuijsen (1998), but the core insights remain.These concern the impossibility of detaching ethical sensitivity from awareness and understanding of the particular circumstances in which judgements need to be made, and the relational ontology of what it is to be human. Ethic of care theorists have named the ‘privileged irresponsibility’ (Tronto, 1993: 120) that enables some to disregard the necessity of care to human survival and wellbeing. In doing so, they have also challenged the assumption that care is naturally ‘women’s work’, and that it is relevant only to the private domain. Attentiveness to the context in which needs are produced and experienced, and in which care is given and received, necessitates an understanding of the cultural and social dimensions of these, as well as the personal Key words

siblings • family responsibilities • carers • ethic of care

Families, Relationships and Societies • vol 1 • no 1 • 2012 • 7-23 http://dx.doi.org/ 10.1332/204674312X633135

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© The Policy Press • 2012 • ISSN 2046 7435


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and interpersonal dimensions. Decisions about social policies can usefully be both developed and evaluated in the light of care thinking (Sevenhuijsen, 2003). Above all, an ethic of care reminds us that we need to understand care as a moral practice, as well as labour (whether of love or not). In this article I consider what an ethic of care perspective can offer to understanding a largely neglected area of family life: care for siblings in older age. Reflecting on earlier work in which I explored the biographies, or ‘care histories’, of carers of both children and adults, I became aware that none of those I had talked to were carers of siblings (Barnes, 2006).This article addresses that lacuna. Based on a small number of exploratory interviews, I consider what these reveal about sibling relationships as a context in which care is given and received, and what they suggest about the nature of care. I use the moral principles of care outlined by Tronto (1993) as a framework within which to consider these relationships. There is much research to be done in this area and this article opens up some of the issues that would benefit from more detailed exploration. First, I consider the way in which the identity of ‘carer’ has been constructed within social policy in the United Kingdom (UK). This is an important dimension of the context in which caring relationships between siblings are enacted.

Naming carers The identification of ‘carers’ as a distinct social group resulted from action by unmarried daughters whose capacity to undertake paid work was compromised by unpaid care for elderly parents. The National Council for the Single Woman and her Dependants (NCSWD) was established in England in 1963 and was the first organisation to represent the interests of women who felt disadvantaged by the expectation that they would ‘naturally’ care for older family members. The identity of ‘carer’ emerged following the realisation that it was not only unmarried, but also married and divorced women who were unable to take up paid work because of caring responsibilities. In response, NCSWD campaigned for financial help, securing the payment of the Invalid Care Allowance to single women carers in 1976, and 10 years later, following an appeal to the European Court of Justice, to married and divorced women. A change of name from NCSWD to the National Council for Carers and their Elderly Dependants retained the focus on care for older people, but broadened the scope of those identified as carers. In 1981, the establishment of the Association of Carers marked a further expansion of this identity to include ‘all carers, regardless of sex, age, marital status or relationship to the person they cared for’ (Barnes, 1997: 103). While the name of this organisation has undergone further change (it is now Carers UK), the existence of a national campaigning organisation focused on the needs and interests of those who care for older people, disabled children and young people, people who live with mental health problems and others, is a significant feature of the UK social care policy scene.The carers’ movement has achieved notable successes, including: legislation providing for carers’ needs to be assessed separately from those they care for (the Disabled Persons Act 1986 and the Carers (Recognition and Services) Act 1995); services in their own right (the Carers and Disabled Children’s

Families, Relationships and Societies • vol 1 • no 1 • 2012 • 7–23 http://dx.doi.org/ 10.1332/204674312X633135


An ethic of care and sibling care in older age

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Act 2000); continuing recognition of the financial impact of caring, including a Carer’s Credit (the Pensions Act 2010); recognition of carers as a group to be protected from discrimination and exclusion from work and study (the Carers Equal Opportunities Act 2004); publication by central government of overarching Carer’s Strategies (DH, 1999; HM Government, 2008). This policy and legislative recognition has built on and been part of a strategy to encourage daughters, mothers, wives, sons, partners and other family members and friends who provide care to put aside their differences and to claim, individually and collectively, the identity of carer. However, not only do many of those who do the work of care not identify themselves as carers, some are reluctant to do so, emphasising instead their prior relationships. They care because they are in an already existing relationship and the care they give is provided through a continuation of that relationship; albeit a changed one, and one in which care giving can lead to conflict and stress as well as being experienced as an act of love. Politically, encouraging people to identify themselves as carers has been an effective strategy. This is helped by the economic significance of unpaid care – in 2011 it was estimated that carers save the state £119 billion through their labour (www.carersuk. org), and by the recognition that becoming a carer is something that can ‘happen’ to anyone. While many carers continue to feel and are in fact unsupported, and while many become isolated and suffer poor health, the profile of carers has been enhanced and their collective influence radically transformed in the 50 years since NCSWD was launched. Kittay (1999) argued powerfully that those she referred to as ‘dependency workers’ should themselves receive support so that the vital work they do should not disadvantage them. This is precisely what the carers’ movement has fought for. Its impact was evident in the interviews I discuss in this article. The sisters and one brother I spoke to had all identified themselves as carers, were in contact with an organisation of carers and none had experienced any difficulty in being recognised as the carer of their siblings by service providers. But there are also more ambivalent political, personal/interpersonal and theoretical consequences of a strategy of distinguishing carers and basing policy around their needs. Raising the profile of the demands of caring contributes to the construction of disabled people as ‘burdens’ on care givers, and to a perception that the needs and rights of care givers and care receivers are in tension if not in conflict with each other (Fine and Glendinning, 2005). Naming carers as a group with legislative rights requires determining who carers are – who can claim these rights? Thus, the category ‘carer’ becomes separate from ‘not carer’, and in particular from that of care receiver. Empirically, that distinction cannot be sustained. Some ‘spouse carers’ are reluctant to identify themselves in this way because they see care giving as part of a continuing relationship, and it may be hard to say which partner gives and which receives care when both are experiencing frailty and illness associated with old age (O’Connor, 2007). There are other contexts in which a blurring of boundaries between care giver and care receiver is evident: when people with learning difficulties care for older parents (Walmsley, 1993; Ward, 2011); when grandparents take on the care of



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grandchildren (Richards, 2001); or when people living with mental health problems support each other in the context of partnership relationships. A categorical distinction between care giver and care receiver suggests that the need for care is restricted to distinct groups of people who can themselves be defined by this need. In the case of particular caring relationships, it also focuses attention on the two distinct individuals, rather than the relationship through which care is given and received.The way in which policy for social care has been constructed reinforces this competitive, individualised approach (Lloyd, 2000). As is often the case within systems relying on categorical definitions of entitlement, the term ‘carer’ has become an administrative convenience with pragmatic benefits for both public officials and carers themselves, but it also obscures the distinct and particular characteristics of the lives of those who give and receive care. Molyneaux et al (2010) have argued that the term ‘carer’ should no longer be employed, but rather that the relationship involved should be referred to in those terms. We need to consider the different dynamics within different caring relationships. This is important not only in relation to support needs, but also to understand the moral choices made about care in different relational contexts, and what their consequences are.

Brothers, sisters and care giving Sibling relationships generally last longer than any other close familial relationship. Whether they are active or not they usually start before we enter into partner relationships or become parents, and outlive relationships with our own parents.They change over time.They can be the source of competitiveness and power struggles; the repository of shared memories; a foil for our own developing subjectivities; take on the characteristics of best friendships or distant companionship; involve care and support, or jealousy and rivalry. They can be egalitarian and reciprocal, but not necessarily at all times (Cicirelli, 1995; Mauthner, 2005; Rowe, 2007). Emotional closeness and frequency of contact among older siblings have been found to relate to gender, to marital and parental status, as well as to geographical proximity, age and education (Connidis and Campbell, 1995).We cannot generalise about sibling relationships: they are diverse in all but their typical longevity. But it is the latter that is a key factor in highlighting the increasing significance of sibling relationships in the context of care giving.This has been recognised for some time in relation to care for people with learning disabilities (Zetlin, 1986), where care for adult siblings after the death of parents can often pass to brothers or, more usually, to sisters. There has also been work considering sibling care in the context of enduring mental ill-health (Jewell and Stein, 2002). In both cases, an important aspect of the dynamics involved is the long-term expectation that siblings will take on responsibility for care in later life. In part this is influenced by parental expectations. Brothers and sisters of people with learning difficulties or enduring mental health problems are also likely to have observed care being provided by their parents, and may have contributed to care giving before taking on primary responsibility for this. But increasing longevity generally, as well as diversity in what ‘family’ means (Williams, 2004), may mean that we also need



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to give attention to care giving between older siblings in old age that is not anticipated, and where there is no previous experience or expectation associated with this.

Source of data This article is based on interviews with five people who responded to an invitation circulated via the newsletters of two carers’ organisations. This stated:

Looking for sibling carers


Are you an older person looking after a brother or sister? People who care for others because they are ill, frail, disabled or otherwise in need of particular support may be mothers, sons, daughters, husbands and wives, or they may be friends or partners.We know quite a lot about caring relationships in these situations, but we know much less about situations in which someone may be looking after a brother or sister, or where siblings are looking after each other. I followed up all who contacted me in response to this, and interviewed all but one person who was looking for information rather than wanting to take part in an interview. These were exploratory, narrative interviews designed to enable carers to tell their stories and to develop an understanding of what caring meant to them and the circumstances in which they had come to be carers. Thus, they started by asking people to describe their current situation, and then to reflect back on their relationship with their sibling when they were younger, and to describe how they became a carer. I made no claim that I was undertaking formal research, but I did explain that I would want to use their stories to write and teach about caring. I provided written information explaining this and that I would change names and leave out any specific information that might identify them when writing about their stories. All agreed to take part on that basis. I produced a summary of each interview transcript that I sent to them and asked whether it contained any inaccuracies or whether there was anything that they would not wish me to use. None responded. My perception was that interviewees were interested in the opportunity to reflect on their experience and were glad of the interest being shown. Although all were on the mailing list of carers’ organisations, only one appeared to have significant contact with that organisation and none were active in other forms of campaigning for carers. Interviews were transcribed and analysed manually by reference to ethic of care principles.The aim was to consider both how these experiences might be understood by reference to care ethics, and also whether an understanding of sibling care in these contexts might contribute to a development of work on care ethics per se. This is part of broader work in which I am involved (Barnes, 2012).


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Circumstances of sibling care in old age I start with brief descriptions of the circumstances described to me. Lydia was in her mid-eighties and caring for her older sister Jeanie. Lydia’s second husband had dementia and had recently been admitted to a nursing home. Jeanie had mobility problems and was quite deaf.They had lived together for many years, and at one stage been part of a household that included Lydia’s son from her first marriage, their father and Lydia’s second husband. I spoke to Jeanie after interviewing Lydia. Diana cares for her brother Jeff. Diana is in her early seventies and Jeff is two years younger. Jeff lives alone in the house he has lived in all his life and Diana and her husband visit him weekly. He receives daily visits from care workers. Jeff has Parkinson’s disease, and has had two strokes. Diana has power of attorney following evidence that her brother had been financially defrauded. His self-care was poor and Diana first became concerned when he visited and she realised how dirty his clothes were. Jacqueline had cared for her sister Clara in the final years of her life when she had dementia and cancer.They were both in their sixties.They were born in Trinidad, but Jacqueline had lived in England since her late teens. Clara had travelled throughout her life, but settled with Jacqueline when it became evident that she could no longer live alone. Jacqueline also cares for the woman with whom she had lived when she came to England and who is now in her nineties. Mary’s brother John has lived with her since she was in her mid-thirties. Their mother had died and their father went to live with their younger sister. She is now in her mid-sixties and John is a few years younger. He has learning difficulties and little speech. Mary’s husband lives with them. John goes to a day centre and sometimes to respite care. He was there during my interview with Mary, but I found it difficult to include him in this. Greg lives with his brother Jim who has learning difficulties. They were the youngest pair of siblings – Greg is in his late forties and Jim is three years younger. Greg has never married and they both live in the house in which they grew up.There are four other older siblings. Greg gave up work five years previously when he was looking after his father, who subsequently died, as well as Jim. Jim was unwell and in bed when I undertook the interview with Greg. Immediately we have confirmation that it is not only when people have learning difficulties that siblings become carers.This small selection gives an indication of the diversity of contexts for older sibling care, as well as hinting at some of the similarities.

Caring responsibilities In naming ‘responsibility’ as the second of the moral principles of care (after ‘attentiveness’),Tronto (1993) and Sevenhuijsen (1998) seek to distinguish a cultural or sociological concept of responsibility from the way in which this is conceptualised in most political theory. Tronto (1993: 133) argues:



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‘Responsibility’ has different meanings depending upon one’s perceived gender roles, and issues that arise out of class, family status, and culture, including cultural differences based on racial groupings. In arguing for the inclusion of care as a political and philosophical notion, I am suggesting that we are better served by focussing on a flexible notion of responsibility than we are by continuing to use obligation as the basis for understanding what people should do for each other. The most powerful message that comes from the stories told by the five carers who I interviewed is the sense of responsibility that they felt because of their family relationships.While this was expressed in different ways and linked with the particular relationship histories within which care giving was embedded, there was a sense that responsibility was more formally acknowledged in these contexts in which care giving was not as ‘typical’ an aspect of familial relationships as it is in the case of spouses or parents, for example. Thus, for Lydia and Jeanie, the current caring relationship can be seen as a continuation of a lifetime in which they had had close contact, if not a close emotional relationship. Jeanie had never married; she had lived with Lydia and other family members for a long period of time and before that had taken jobs that had enabled her to be physically close to her sister and to see her regularly. Lydia had grown up with an expectation that she should look after her sister: ‘I have always had the feeling that I have got to look after her. Mum always sort of conveyed that to me in “look after Jeanie” and yet she’s not really that, looking back over it, she lived her own life, she, but she had some funny ideas, well I say funny ideas, they weren’t funny ideas, but how can I put it? I can’t really describe her. She was, I was just going to say non-descript, there was nothing, she had no interests, sort of thing, her life just went along….’ Lydia’s awareness that there was nothing identifiably wrong with her sister, but that she somehow needed to be looked after, was embedded within a powerful sense of the importance of family. She herself had worked as a live-in housekeeper in a job that also involved responsibility for her employer’s children and, when she found herself unable to have children, had adopted a son. She became very emotional when, in response to a question from me about whether she got satisfaction from looking after her sister, she said: ‘I tell you what, I know you are going to think I am silly but the most satisfaction I get out of looking after Jeanie is I think there is a heaven and I know my mum and dad will be there because they have been so good parents and that and I should be able to look them straight in the eye and say “Mum, I looked after her.”’ The emotional characteristic of Lydia’s experience of responsibility for her sister was very different from Mary’s sense of responsibility for her brother John, although this was equally strongly located within the cultural expectations of family. Her account



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offered a sense of inevitability that she should end up caring for him after her mother died and then her father went to live with another sister:“it just happened”. One sister was looking after her father and another had three young children at the time. She commented that when people are young they tend not to look ahead and anticipate what is likely to be involved, but her account noted personal and interpersonal costs resulting from her acceptance of responsibility for John. She spoke of the cost to her son in the degree of attention she was able to give him and of not being able to protect him from abuse from another family member; and the cost to herself of not following up two miscarriages, even though she would have liked more children: “because I had enough to do”. She had also given up a job she enjoyed because of the company of other women: “I have always had men round me, and they are hard work aren’t they....”The tone of her interview overall was one of regretful acceptance of the impact of the responsibility that she had taken on. Diana also located her care for Jeff within the expectations of family: “It’s family, blood, blood’s thicker than water and I promised my mum before she died that I would look after him or keep my eye on him.” Her story has similarities with Lydia’s in that there was always a sense that her brother would need looking after. Although he had worked for much of his adult life, he had never mixed when he was a child, he had been diagnosed with a brain tumour when a young adult and lived with his parents until their death. Diana reflected that when she had married and had children of her own she realised that when she was young she had had to care for her brother in a way that was unusual. She had to protect him and make sure he wasn’t picked on by other children. Diana suggested that her mother had “made a rod for my back, for her own back, and dad’s....” by not teaching Jeff how to look after himself or deal with his own problems. She also described Jeff ’s relationship with his mother after his father’s death as a “working partnership” that was “just like husband and wife. Really funny. Peculiar.” Diana was the only one of the five who did not live with her sibling and this contributed to a sense of greater emotional distance. Early in the interview she said she did not like him when he was a child and her account focused primarily on the tasks involved in caring for him at this stage in their life: managing his finances, ensuring that his washing and shopping were done and liaising with health and social care services, rather than on more personal aspects of their relationship. She had accepted responsibility for aspects of the practical work of care giving and of taking care that other aspects of care were provided by others. But this did not appear to be accompanied by an emotional commitment that was evident when she spoke about care for her grandchildren, or, to some extent, when she referred to caring for her uncle. In this case she said: “I enjoyed looking after my uncle ’cos he was a lovely man, absolutely lovely man and his house was spotless, absolutely spotless, yea, and so I used to try and keep it going....” Greg said he ‘got lumbered’ with looking after his brother after his father became too ill to care for him. He said that when Jim was born there was a family discussion and vote on whether he should go into to a home, but after this initial decision his account indicates that an intense loyalty took hold. Greg was the ‘default’ carer when his father became ill as his three older sisters and older brother all had problems of their own. He said: “I was more or less the only choice.” But having accepted this




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responsibility, he guards it fiercely. He is uninterested in respite care as he regards this as an indication of failure and does not think anyone else could look after Jim as well as he can. He battles officialdom on both their behalves – to ensure that Jim gets the services he needs and that he, Greg, gets recognition. He said that the whole family would turn out “like a mother tiger with her cubs” if there was any threat to Jim, and that his ambition was to live five minutes longer than his brother as he had difficulty imagining what his life would be like without caring for him. Jacqueline was no longer caring for Clara who had died 18 months before the interview. She was the only one who had not anticipated the possibility that she would care for her sister and the period of intensive care, when Clara lived with her, was by far the shortest of the five – approximately three years. Their individual and shared biographies were very different from the others, not only in their different cultural background and, for Clara in particular, the impact of racism on her life in England, but also their life experience. Clara was the only one of the siblings receiving care who had worked in a professional capacity and Jacqueline also described Clara’s love of travel and her inability to settle in one place for any length of time. In contrast, Jacqueline had lived in the same part of England since arriving in her late teens.Thus, the history of their relationship was partly about the adventurous Clara coming and going around the stable centre of Jacqueline’s life. They had not been particularly close when they were young and Jacqueline had felt badly treated by her father in comparison with her other siblings who she described as more attractive than her. Nevertheless, in this case too, the familial relationship was an important reason for care giving: ‘[T]here wasn’t anybody else to do it and it was my duty to do so.... I also felt that she was my sister and if I would, if I had a friend who needed me, and I told her that I would be doing the same thing for them ... she’s my sister and there was no way I was going to put her into a home, it wasn’t going to happen because we don’t come from that kind of culture and it saddened me because knowing her, the kind of person she was, this was a great sadness for me, a woman who was so independent ... until she started to degenerate memory-wise.’ These five different accounts thus all emphasise the cultural context of a felt responsibility to care within familial relationships. But they embody very different emotional responses to this in the context both of different pre-existing relationships and of the experienced consequences of caring. While all feel responsible, what that means is rather different in each case.This becomes clearer as we look at other aspects of the experience of care on the part of these five siblings.

Intimate knowledge, intimate care? The principle of ‘attentiveness’ refers to awareness and understanding of needs experienced by the other. It is often assumed that those who are closest to others will


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be most attentive to their needs as they will know them best. For example, speaking of care for close relatives and intimate others, Engster (2007: 56) suggests:


We have special responsibilities to care for these individuals because we are usually best situated to provide them with the most attentive, responsive, and respectful care. We are also likely to have a relational history with them that may allow us to better understand and anticipate their needs and may make them more comfortable expressing their needs to us. Others have also suggested that competence is helped by good knowledge of the person being cared for (Barnes and Brannelly, 2008). In view of the longevity of sibling relationships, it might be appropriate to assume that familiarity and the knowledge that comes with that offer a good basis for attentive, competent care. What do our five stories suggest about that? What was perhaps surprising, but also common to the five accounts, was the fact that none of those interviewed described themselves as having been close to their siblings when they were younger. Diana said that she had not really liked Jeff; Mary said that she got on all right with John, but had not been either close to him or protective of him when he was young; although Lydia and Jeanie had lived in close proximity for much of their lives, Lydia did not think that they had been emotionally close as children or teenagers; Greg said very little about his youth or childhood; and Jacqueline’s account of her childhood and youth emphasised her experience of being excluded from activities and privileges enjoyed by her siblings. Yet all, again in different ways, evidenced a form of intimate knowledge based in a lifetime familiarity and, in some cases, the development of intimacy through the process of care giving and receiving. The latter was most evident in Jacqueline’s account.The compassion she felt about the physical and psychological changes that Clara experienced as a consequence of illness was partly expressed in embodied care.This was based in a particular knowledge of what was important to her sister in terms of her physical presentation, and a more general understanding of how to care for the hair and skin of a black woman. Our conversation started in response to a photo of Clara that she had put on the table. Jacqueline noted that the photo had been taken after Clara’s hair had grown back following chemotherapy and Jacqueline had taken her to a specialist centre that understood black people’s hair. Towards the end of the interview she described aspects of the physical care that she gave to Clara: ‘I put colour in her hair and stuff like that and relaxed it so I did everything that I think my sister would have done because I knew her and knew her standards ... I would remind her of all the things that she used to do and she shouldn’t let herself go, so get dressed in the day ... we went out shopping ... she bought some beautiful things ... and you know I would always remind her: “Put some cream on your face.” I used to do her back because of the pains she was having in the back after she had a bath, I would put stuff on her back for her.’




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I asked if they had gone clothes shopping together when they were younger and she replied that they hadn’t, she had not been close to any of her three sisters ‘as sisters’ and had always felt on the ‘periphery of things’. Her description of the three years during which they were living together at the end of Clara’s life suggested a time during which they became closer than they had ever been before. This was in spite of some difficult encounters between the two of them and with the health service. In spite of a lack of intimacy when they were younger, Jacqueline’s knowledge of her sister helped her to offer competent care and to understand the way in which her sister responded to this. Diana’s account contained a very different kind of reflection on embodied care. Her awareness of Jeff ’s physical decline was based in a familiarity that included a longstanding recognition that he was not good at looking after himself, although she was somewhat self-critical that she had not realised this earlier: “You shouldn’t be that close to somebody before you don’t notice, you notice little things and they don’t add up, not at first do they....” Her particular insight that he had had a stroke was aided by her experience as a nursing assistant. But in contrast to Jacqueline and Clara, Diana did not go on to provide intimate care for Jeff. Diana spoke of how paid workers chivvied him about his personal care better than her, and contrasted her experience of getting older patients to bathe when she was in the uniform of a nursing assistant, from her capacity to do this for her brother. Earlier I quoted Lydia in her struggle to capture her understanding of her sister Jeanie. Early in the interview she said: ‘She has always sort of been attached to me because she has never got married, she has never had a boyfriend and so when she had a day off she used to go at the weekends to mum and her day off she always came to me every week so I have never been without her really.’ Lydia said that they had never fallen out, but she also felt rather baffled in trying to understand her sister: ‘She’s not backward or anything, but she’s not quite as much with it as other people are.... She’s very much out to look after herself but, I can’t quite describe it, after all these years, I can’t describe it. She’s very much on her own. She’s never had any friends, all her life.’ Their proximal closeness throughout their lives did not include intimate sharing of thoughts, emotions and experiences, but appeared to have generated an unspoken capacity that enabled Lydia to care for Jeanie. Jeanie is deaf but understands when Lydia speaks in a way that she cannot understand others. Lydia recognises the importance of routine to her sister and, although she gets frustrated by the constraints this imposes on her, she recognises the trust that her sister has in her and the importance of the fact that “we have always known each other, we know each others’ ways”. Neither Mary nor Greg’s accounts suggested a personal intimacy based on the ‘good friendship’ that characterises some (but by no means all) sibling relationships. Greg



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talked of understanding his brother’s “individual language”, which others could not. He also suggested that his close knowledge of Jim meant that he could provide better care than anyone else. He knows what Jim enjoys, in particular what sorts of films and music he likes, and makes sure that he has access to these. Greg also recognises the importance of keeping to Jim’s routine and he cannot imagine anything other than living with him. For Greg, “Jim comes first” in a way that suggests a protectiveness that Tronto (1993) argues is rather different from care. Mary wondered whether her parents’ over protectiveness of John had been unhelpful: “They didn’t even send him to a day centre then, a bit protective sort of you know like that, he would have perhaps been better if he had gone to the day centre....” For her, familiarity also meant understanding John’s likes and dislikes, his routine and being able to communicate with him in a way that others couldn’t. She said that some people assumed that John was her son and the way she described their relationship suggested this. She puts his clothes out for him, reminds him to go to the toilet and helps him get into the bath using a chairlift. She also suggested that her son’s relationship with John had been like that of brothers when they were younger. Thus, once again, these accounts emphasise the importance of familiarity, but the nature of the caring relationships this enables is very different.

Relational, reciprocal, egalitarian? The principle of responsiveness encompasses the need to be aware of the way in which care receivers respond to care. Recent developments in an ethic of care have emphasised the importance of considering care receiving as part of the relational nature of care and have suggested that this principle needs further development. Mullin (2011) has suggested a focus on the ‘gratitude’ of the care receiver while Pettersen and Hem (2011) and Barnes (2012) have explored the notion of ‘reciprocity’ as a more appropriate way of conceptualising this. Much of the resistance to care among disabled people has been based in experiences of this as oppressive, paternalistic and disempowering (Beresford, 2008). Sibling relationships are often considered to have more egalitarian qualities than those associated either with intergenerational familial relationships or with relationships between paid care workers and those they support. While the perspectives I explored in these interviews were (primarily) those of the care givers, they offered important reflections on the responses of the siblings receiving care and suggest that some quite complex power dynamics are at play. Only in Jacqueline’s account do we see any resistance to receiving care, and this changed over time. Jacqueline was frustrated that Clara’s reluctance to seek medical advice, coupled with her nomadic lifestyle, meant that she left it very late to seek help, by which time both her dementia and her cancer were advanced.The intensive period of care giving during which they lived together thus followed a period of some years during which Clara’s rather odd behaviour had been the subject of concern and discussion within the family, and Jacqueline had been both trying to encourage her sister to seek help and negotiating with health services on her behalf. Jacqueline was hurt by Clara talking about her to others behind her back, and her accusations



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that she was using her money. At first, Clara sought to hold on to her own power by controlling aspects of care giving: ‘[F]irst of all I noticed that if I went into the room to give her medication, my sister would get up off the bed and she would say I am going to the toilet and I would be standing there with the medication till she went to the toilet and came back....’


This was not that Clara did not want to take her medication, but can be read as a way in which she sought to maintain her identity as a woman in charge of her own life. But after about two years, Jacqueline said that Clara started to say thank you to her for what she was doing for her. Jacqueline’s account of their relationship included accounts not only of physical care, but also of having good times together: ‘We went to London, go to the theatre, send her to the ballet, we’d go to the ballet and she, we went out, we didn’t stay in the house and if I made a comment like “live for today because for tomorrow” or something she would say “especially for me”.’ Jacqueline ultimately received recognition from her sister in a way that she had lacked for much of her previous life. Thus, in this case, care giving and receiving appeared to bring the sisters closer together and to enable them to develop a more equal relationship. In contrast, the other accounts indicate some expectation on the part of care receivers that they would be cared for. Lydia described how her life was built around the routine that her sister Jeanie preferred. When I asked how Jeanie responded to being looked after by her, Lydia said: Lydia: Author:

‘I think she takes it as a matter of course really and truly. I don’t think she ever thinks that I would ever sort of desert her or anything. She’s very trusting with me, never appears to get cross or....’ ‘Or resentful being dependent on you?’

Lydia:

‘No. She’ll almost feel as if it’s her right: “I’m your older sister.”’

My brief conversation with Jeanie reinforced the view that she was very content to be looked after by her sister. Greg and Mary also talked of lives built around the routines that worked for their brothers. For Mary, as I have indicated, this was experienced as a constraint on her life while, for Greg, care giving had become his life and he found it hard to imagine being without it. He suggested that his brother Jim had a “wonderful life” because he did not have to worry about money, food appeared “as if by magic” and “we wait on him hand and foot”. Diana considered that her brother Jeff was very self-centred and seemed content to remain alone with the support he received from paid care givers and from his sister and her husband. She considered that, when he lived with


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his mother, “he was quite happy being waited on hand and foot” and that, when his mother became ill, Diana had had to make clear to him that she was not going to do everything for him as well as look after their mother. These latter three sibling carers all expressed surprise when I asked them if their brother or sister did anything to care for or help them. However, Lydia identified help that she had received from Jeanie in the past:


‘She helped me with [son] with his clothes and everything and I’m always, I didn’t think about it I suppose but there was always the feeling that they would be, I didn’t feel on my own with him, I didn’t consciously think “they will help me if anything goes wrong”, but I always felt safe.’ And she talked of the value to her in the present of having somebody who “will always be with you whether they help you or not, they would never go against you, never speak to anybody else even if they knew all your faults, they would never run you down to anybody....You belong to somebody.” We need to be cautious about drawing conclusions solely from interviews with care givers, but these accounts do not indicate resistance to being dependent on siblings for care. Nor do they suggest that power is exercised solely by the care giver, or that caring within sibling relationships is less subject to the impact of what might be considered hierarchical familial relationships. The relationships described here do suggest gendered assumptions about the direction of care (in particular in the case of Diana and Jeff), but may also reflect cultural expectations that are changing both in terms of gender relations and as a result of action on the part of people with learning disabilities within the broader disability movement. Reciprocity within caring relationships takes a number of forms and should not be understood solely in terms of exchanges of help. Both Lydia and Jacqueline experienced a form of reciprocity that was not contractarian. Rather, their accounts emphasise the need to understand reciprocity as particular to the specific context and history of the caring relationship, as well as the social and cultural context in which it is embedded.

Conclusion This article has opened up a consideration of sibling care in older age and the way in which an ethic of care can be applied to understand key aspects of this.Theoretically, it highlights the importance of understanding caring relationships in context, as well as of understanding both the compassion and the conflict associated with care giving and receiving within family relationships.What are nominally more equal relationships between siblings in comparison with, for example, parent–child relationships, appear to be just as subject to such tensions. They raise similar questions about how power operates, as well as about how knowledge and intimacy can facilitate care that enhances wellbeing. My major focus in this article has been on the moral and relational characteristics of sibling care. From this perspective, the normative expectations of familial relationships are very evident, although the emotional and relational consequences of these vary




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considerably. Ethical decisions about ‘the right thing to do’ in terms of care for family members extend to relationships beyond those between parents, children and spouses. This study suggests the importance of understanding the particular histories and contexts of sibling caring relationships and not assuming either a greater egalitarianism or reciprocity in this context than exists in other family caring relationships. An ethic of care perspective is useful in sensitising us to the motivations, experiences and impact of sibling care giving and what this means to those involved. It also reminds us that, in focusing on the need to support care givers, we cannot isolate such support from the caring relationships in which they are involved. Empirically, changes in family structures, non-kin relationships, and increased longevity, will generate diverse types of care relationships and it is likely that the role of sibling care will increase. Research on friendship and care in the context of same-sex relationships (Adam, 2004; Roseneil, 2004) suggests that we might need to understand care differently in these different relational contexts. We need both to know more about the extent and nature of sibling care in old age, and to better understand the experiences and consequences for both sibling care givers and receivers. This may be very different for those who anticipate taking on this role from an early age, and those who find themselves in this position unexpectedly. This exploratory study suggests that broadening the range of relationships to include siblings as carers is not problematic in terms of formal recognition of brothers and sisters in this role, nor in their self-identification. However, it is not yet clear that support services have fully recognised the likelihood that many who do take this on will carry these responsibilities for very many years, and that their needs for support will reflect the impact of enduring demands.An emphasis on enabling service users to exercise greater control over the services they receive should not be at the expense of recognising the relational character of care giving and receiving, either over a lifetime or during intensive periods at the end of life. And in pursuing the shared interests of carers, the differences between the experiences of carers in different contexts should not be forgotten. References Adam, B.D. (2004) ‘Care, intimacy and same-sex partnership in the 21st century’, Current Sociology, 52 (2): 265–79. Barnes, M. (1997) Care, communities and citizens, Harlow: Longman. Barnes, M. (2006) Caring and social justice, Basingstoke: Palgrave. Barnes, M. (2012) Care in everyday life:An ethic of care in practice, Bristol:The Policy Press. Barnes, M. and Brannelly,T. (2008) ‘Achieving care and social justice for people with dementia’, Nursing Ethics, 15 (3): 384–95. Beresford, P. (2008) What future for care?,York: Joseph Rowntree Foundation. Bowden, P. (1997) Caring: Gender sensitive ethics, London: Routledge. Brannelly, T. (2006) ‘Negotiating ethics in dementia care: an analysis of an ethic of care in practice’, Dementia, 5 (2): 197–212. Cicirelli,V.G. (1995) Sibling relationships across the life span, New York: Plenum. Connidis, I.A. and Campbell, L.D. (1995) ‘Closeness, confiding and contact among siblings in middle and late adulthood’, Journal of Family Issues, 16 (6): 722–45.



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DH (Department of Health) (1999) Caring about carers, London:The Stationery Office. Engster, D. (2007) The heart of justice: Care ethics and political theory, Oxford: Oxford University Press. Fine, M. and Glendinning, C. (2005) ‘Dependence, independence or inter-dependence? Revisiting the concepts of “care” and “dependency”’, Ageing and Society, 25: 601–21. Gilligan, C. (1982) In a different voice: Psychological theory and women’s development, Cambridge, MA: Harvard University Press. Held,V. (2006) The ethics of care: Personal, political and global, Oxford: Oxford University Press. HM Government (2008) Carers at the heart of 21st-century families and communities: ‘A caring system on your side. A life of your own’, London: DH. Jewell,T.C. and Stein, C.H. (2002) ‘Parental influence on sibling caregiving for people with severe mental illness’, Community Mental Health Journal, 38 (1): 17–33. Kittay, E.F. (1999) Love’s labor: Essays on women, equality and dependency, New York, NY and London: Routledge. Lloyd, L. (2000) ‘Caring about carers: only half the picture?’, Critical Social Policy, 20 (1): 36–57. Mauthner, M.L. (2005) Sistering: Power and change in female relationships, Basingstoke: Palgrave. Molyneaux, V., Butchard, S., Simpson, J. and Murray, C. (2010) ‘Reconsidering the term “carer”: a critique of the universal adoption of the term “carer”’, Ageing and Society, doi:10.1017/S0144686X10001066. Mullin,A. (2011) ‘Gratitude and caring Labour’, Ethics and Social Welfare, 5 (2): 110–22. O’Connor, D. (2007) ‘Self identifying as a carer: exploring the positioning process’, Journal of Aging Studies, 21 (2): 165–74. Pettersen, T. and Hem, M.H. (2011) ‘Mature care and reciprocity: two cases from acute psychiatry’, Nursing Ethics, 18 (2): 217–31. Richards,A. (2001) Second time around:A survey of grandparents raising their grandchildren, London: Family Rights Group. Roseneil, S. (2004) ‘Why we should care about friends: an argument for queering the care imaginary in social policy’, Social Policy and Society, 3 (4): 409–19. Rowe, D. (2007) My dearest enemy, my dangerous friend: Making and breaking sibling bonds, London: Routledge. Sevenhuijsen, S. (1998) Citizenship and the ethics of care, New York, NY and London: Routledge. Sevenhuijsen, S. (2003) ‘Trace: a method for normative policy analysis from an ethic of care’, Paper prepared for the seminar ‘Care and Public Policy’, University of Bergen, November. Tronto, J. (1993) Moral boundaries: A political argument for an ethic of care, New York, NY and London: Routledge. Walmsley, J. (1993) ‘Contradictions in caring: reciprocity and interdependence’, Disability, Handicap and Society, 8 (2): 129–41. Ward, N. (2011) ‘Care ethics and carers with learning disabilities: a challenge to dependence and paternalism’, Ethics and Social Welfare, 5 (2): 168–80. Williams, F. (2004) Rethinking families, London: Calouste Gulbenkian Foundation.



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Zetlin, A.G. (1986) ‘Mentally retarded adults and their siblings’, American Journal of Mental Deficiency, 91: 217–25.


Marian Barnes School of Applied Social Science, University of Brighton, UK [email protected]
