'Mastering an unpredictable everyday life after stroke' - older women's experiences of caring and living with their partners

Introduction:  The shift from older persons living in institutions to living in the community naturally affects both the older persons and their partners. The informal care is often taken for granted, and the research that focuses on the diversity of older female carers needs is scarce.

Aim:  To explore and learn from the older women how they experience their life situation and formal support as carers of their partners after stroke and to suggest clinical implications.

Method:  The design of the study is qualitative being based on the focus group method. Sixteen carers, median age 74 years (range 67–83), participated in four focus group discussions, which each met once for not more than 2 hours.

Findings:  The discussions resulted in one comprehensive theme; ‘Mastering an uncertain and unpredictable everyday life’. Three subthemes emerged from the material: ‘Living with another man’ where the carers discussed not only the marked change in their partner’s personality, but also the loss of a life-companion and their mutual intellectual contact; ‘Fear of it happening again’, comprising the carers’ experiences of fear and confinement, of always having to be ready to help and of being trapped at home; ‘Ongoing negotiation’, referring to the carers’ struggling and negotiating not only with their partners, but also with themselves and formal care for time to themselves.

Conclusion:  This study helps us to understand how these older women tried to master an uncertain and unpredictable life. Their life had changed radically; now they were always on call to help their partners and felt tied to home. The results draw attention to the carers’ need for time to themselves, a greater knowledge of stroke and continuous support from formal care.