Normalcy after Stroke: Spousal Caregiving and Management of Uncertainties

Stroke is usually characterised by sudden onset, and what follows may be a fluctuating and long-term recovery trajectory marked by uncertainties. In particular stroke, which is commonly considered a disease of old age, may pose various risks and uncertainties in the life course and biography of working age patients and their carers, who are often spouses. While chronic illnesses such as stroke have been widely conceptualised as ‘biographical disruption’ (Bury, 1982) for both patients and carers, this notion has also been contested on the basis that not all cases of chronic illness can be seen exclusively as ‘disruption’. In this paper, I explore experiences of spousal carers of people who have had a stroke whilst in their working age (25-55). Drawing on qualitative data collected through 17 ethnographic in-depth interviews with spousal carers in Victoria, Australia, this paper demonstrates that their responses to stroke and the caregiving role vary across different social positions and contexts. Some participants were striving to regain a sense of normalcy, others somewhat reluctantly accepted the ‘new normal’, while yet others embraced the ‘new normal’. Departing from conceptualising carers as agentively mobilising resources and navigating a biographically uncertain trajectory in an attempt to regain normalcy, I argue that their responses are better understood as a course of action enacted by a network of individual, medical and healthcare, social, and political actors. In this respect, I suggest that responsibility as necessarily distributed, and challenge the increasingly common construction in policy and healthcare settings of informal carers as choice-making service users. By doing so, this paper aims to generate a basis on which service providers, healthcare practitioners, policy makers and members of the wider society can engage in a constructive and critical discussion towards creating a ‘caring society’.