The social consequences of living with and dealing with incontinence—A carers perspective

Abstract

Incontinence is a discrediting and stigmatising condition for those who experience it, as it signifies a person who is lacking in self-control. For their carers, the very nature of undertaking ‘dirty work’ signifies a low status and low paid job. Those health care professionals higher in status and financial reward put distance between themselves and bodywork, especially bodywork that deals with bodily decay. However, little is known or has been highlighted about the social consequences that living with and dealing with incontinence can have on informal carers. In this paper we examine the notion of dirty work and ‘unbounded’ bodies in the role of informal carers. Through qualitative interviews with carers of stroke survivors the negative social consequences of dealing with incontinence for both the survivor and the carer are explored. We also examine the strategies employed by carers and stroke survivors in order to manage the symptom in an attempt to prove the adult status of the survivor and to protect both the identity of the survivor and the carer. The embarrassment of leakage and the moral danger of odour can lead some carers and survivors to make decisions that can isolate both within the confines of their home. In this sense the very meaning of home is transformed into an isolated and marginalised space.

Introduction

A neglected area in both formal and informal care is research into the notion of ‘bodywork’ or ‘dirty work’ (Twigg, 2000). Twigg (2000) argues that bodywork is ambivalent work and verges on areas of taboo in connection with sexuality or human waste. Hughes (1984) phrased the term ‘dirty work’ as part of the process of caring for someone, and in doing so highlights how this type of work transgresses social and personal boundaries within our society. Through a moral division of labour those with higher status are able to leave potentially stigmatising work to others lower in status. Professionals who work more closely with the body employ strategies to manage the associated stigma that working with it can pose (Bolton, 2005; Jervis, 2001). Paid roles which, and professionals who, work with the body are accorded status and higher remuneration by placing a distance between themselves and the body, sometimes through the use of technology (Lawler, 1997; Twigg, 2000). For example, although medicine deals with patients and bodies it does so by constructing them in terms of the object of science and investigation which leads the body to become distant and depersonalised (Lawler, 1997). Roles that work most closely with the body and its waste are seen as low in status (Jervis, 2001).

Although Twigg (2000) primarily looks at the formal setting for care work this concept can also be applied to the informal process of caring. Twigg, drawing on the analyses of disgust in the work of Miller (1997) and Douglas (1966), Douglas (1970), highlights how in our ‘ordered’ society disgust relates to other people; it is other peoples’ dirt that threatens our ordered boundaries. For Douglas (1970) there is no such thing as absolute dirt. Dirt is ‘matter out of place’ and is defined socially and culturally in the eye of the beholder. She points towards the idea that the physical experience of the body is controlled and modified by the social categories through which it is seen. Fluids and seepage violate the boundary of the body as it throws the integrity of the body into question. Bodily decline and decay have always elicited revulsion or disgust but it is seen as particularly problematic in society today (Lawton, 1998). Our desire for self-contained and bounded individuals is threatened by symptoms such as incontinence. For Lawton (1998), incontinent individuals are ‘unbounded’ and, if dying, are hidden in hospices. The hospice in Lawton's analysis acts as the physical container whereby unbounded individuals can exist; their seclusion enables society to maintain ideas about living bodies being hygienic, sanitised and somatically bounded (Lawton, 1998, p. 123).

Disgust arises not only from what we see but also from what we smell. Odours challenge the notion of bounded individuals because, by their very nature, they escape and transgress boundaries (Lawton, 1998; Twigg, 2000). Lawton, in her description of Annie, highlights how the smell emanating from her body meant that she was eventually segregated from other dying patients to a side ward of the hospice. This strategy was employed by staff to try and contain the odours emitted from the body to be ‘contained within a more bounded space’ (Lawton, 1998, p. 133).

Herskovits and Mitteness (1994) argue that incontinence is a symptom that transgresses our industrial age and biomedical values whereby it is an individual's responsibility to achieve mastery and control over their health. The incontinent person in this sense is lacking self-control through loss of control of their bodily functions; this loss is “embarrassingly non-adult”. The management of incontinence is critical for women to maintain their self identity as competent adults (Peake & Manderson, 2003). Herskovits and Mitteness (1994) go on to argue that the failed incontinent body evokes particularly destructive assaults on a person's adult status because there is both symbolic and actual filth that emanates from their body. Filth in this sense is powerful in that it contaminates aging, thus requiring older people as a whole to prove and re-prove their adult status through general and specific strategies. The unboundedness of the body and its leakiness also undermine the identity of that dying body. In contemporary Western culture a person's selfhood and identity are tied up to the ‘possession of a physically bounded body’ (Lawton, 1998, p. 131). Leakiness or unboundedness can lead those individuals to curtail their activities and withdraw from social participation (Grimby, Milsom, Molander, Wiklund, & Ekelund, 1993; Lagro-Janssen, Smits, & van Weel, 1992; Mitteness, 1987a). The ‘loss of physiological autonomy’ is embarrassingly non-adult and can elicit feelings of shame (Eisenhandler, 1992). Furthermore, odours, sights and textures can all disrupt social relationships (Isaksen, 2002).

For many, incontinence is seen as being the last frontier of the social life, the point beyond which it is no longer possible to engage actively and equally in society (Twigg, 2000). Its social and psychological impact on a person's life has been well documented (Brown et al., 1998; Dugan et al., 1998; Fultz & Herzog, 2001; Herzog, Fultz, Brock, Brown, & Diokno, 1988; Johnson et al., 1998; Lagro-Janssen et al., 1992; Seim, Hermstad, & Hunskaar, 1997). The prevalence of depression, anxiety and stress amongst carers living in the community has also been thoroughly researched (Draper, Poulos, Cole, Poulos, & Ehrlich, 1992; Greveson & James, 1991; Jones & Peters, 1992; Wade, Legh-Smith, & Hewer, 1986). The impact that urinary incontinence can have on the emotional health and social life of the carer, however, is a neglected area (Cassells & Watt, 2003; Fultz et al., 2005). Only a few small studies have explored the impact that incontinence can have on the lives of informal carers and these have highlighted the loss of personal time and space available to a carer (Gallagher & Pierce, 2002), how the space of home changes to incorporate the needs of both the carer and incontinent person (Forbat, 2004) and how incontinence and frequent toileting cause sleep deprivation for both (Cassells & Watt, 2003). The aim of this paper is to build on existing literature that highlights the impact of urinary incontinence on a person's life and to explore the notion of the bounded body and dirty work in light of the role of informal carers looking after someone with incontinence. The data presented here are drawn from a study that explored the impact that caring for an incontinent stroke survivor can have on the life of the carer, with a specific focus on the effects of urinary incontinence on this relationship.