‘The balance in our relationship has changed’: everyday family living, couplehood and digital spaces in informal spousal care

Abstract

Building on an ethnographic approach, this study aims to explore how the notion of couplehood and family life is understood and negotiated in everyday life by older carers and their spouses. Inspired by Morgan's perspective on the doing of family life, and Hochschild's analysis of emotion work and feeling rules, the article shows how the process of becoming a carer/care recipient creates a new life situation for couples. The findings show that gendered tasks of family life such as housework and financial responsibilities change between spouses, and new practicalities emerge. This in turn changes the power balance between the spouses and how they do couplehood. The findings also reveal how the participants' sense of we and I are negotiated to do family life, with regards to their health, sense of moral obligation, personal autonomy, love and caregiving. A sense of social isolation is apparent, and social media, apps and online games are sometimes used to create digital spaces in which participants can maintain connections with friends and children, find solitude and regain energy by getting a temporary pause from spousal informal care. Such strategies enable couples to find balance and a sense of autonomy in their lives as a family.

Through Thick and Thin: The Meaning of Dementia for the Intimacy of Ageing Couples

“…Several qualitative studies of family caregiving touch on care and have addressed the perspective of older family carers [ 2 , 33 ], but persons with dementia have often been excluded from research [ 34 , 35 ]. Our study begins from the idea that it is important to include people with dementia in research to the extent that they can participate, in terms of the stage of the illness [ 4 , 8 , 36 , 37 ]. Five of the spouses with dementia did not participate in this research.…”

“…In addition to cognitive and functional decline, dementia affects an individual’s personality, emotional control, and behaviour. Hence, the condition often impacts the everyday interactions and intimacy between partners [ 2 , 3 , 4 ]. Our study aims to find out how people with dementia and their spouses describe physical and emotional intimacy when the other partner has progressive dementia.…”

“…However, the effects of dementia on a couple’s life depend on the type of illness and the symptoms the other partner has, as well as how far the dementia has progressed. Previous research shows that, despite everyday life challenges, both partners may aim to maintain a sense of couplehood [ 4 , 5 , 6 , 7 , 8 ]. In the early stages of dementia, in particular, each member of the couple often strives to continue their own activities as they did before the onset of the condition [ 8 ], in addition to their joint activities [ 6 , 8 , 9 , 10 ].…”

“…As the illness progresses, the spousal roles become challenged, and everyday life responsibilities may bring about feelings of anxiety for both partners when, for example, the gender-related roles that both are used to are crossed [ 11 ]. This results in situations where the household chores previously conducted by the other fall to the ‘wrong’ partner, such as cooking, clothing maintenance, or car maintenance [ 4 , 5 , 7 , 9 , 11 , 12 ]. Moreover, one of the essential elements of the couplehood, namely emotional and intellectual reciprocity, may disappear as the condition progresses [ 2 , 3 , 13 , 14 ].…”

“…The spouse whose partner has dementia may try to find closer physical intimacy and emotional bonds [ 18 ] and rebuild the relationship as the disease progresses [ 4 , 8 , 9 ]. However, dementia is often described as a loss of the person, despite their continued physical presence [ 3 , 27 , 28 ].…”