Crossing a Line: A narrative of risk-taking by older women serving as caregivers

- The roles of older women serving as caregivers include advocate and negotiator.
- Caregivers take risks in order to have their needs heard and opinions respected.
- Professional (health)care systems are viewed as disempowering informal caregivers.

BackgroundCaregiving carried out by adults for other adults is increasing around the world as the demographics of many industrialized countries shift toward an older population with escalating care needs toward the end of life. Although much has been written about caregiving, few studies document the experiences of providing care as narrated by the caregivers.AimTo explore the everyday experiences of older adults serving as primary informal caregivers to significant others.MethodsA process of narrative inquiry was used via repeated interviews with three older women caregivers providing care to family members or friends. The data were analyzed using storyboarding techniques and identifying critical turning points, culminating in a poetic transcription of the resulting narrative.ResultsThese caregivers describe a tension that exists across their experiences and communication with authorities on whom they rely for guidance and collaboration. Situations in which this tension pushes the caregivers to act in ways that represent risk to themselves or their care recipients are central to the collective narrative.Conclusion and significanceThe everyday experiences of older adult caregivers include not only familiar care routines, but also advocacy on behalf of care recipients and negotiations with external authorities, resulting at times in unwelcome risk-taking. Their narrative warrants attention due to the lack of power described by caregivers when acting on behalf of their care recipients and the need for those in authority to recognize their dilemma.