When Caregiving Becomes Desperate: Subjectivity, responsibility, and ethics in contemporary mother-daughter narratives of care

Abstract

To be a caregiver while also being next of kin is emotionally charged. This article discusses narratives of care that goes beyond what Amelia DeFalco calls “caregiving at the limit”, i.e. care necessary for basic survival. In these narratives of what we call desperate care, not only is life at stake, but the care is partly done against the will of the care recipient. The modus of care is urgent and anxious, the caregiver exposed and vulnerable. To explore the concept of desperate care we analyse two contemporary Swedish narratives, in different media and from different perspectives. Marie Tillman’s graphic novel En trasig historia (2020) depicts a young girl, Mia, trying to care for a mentally ill and unpredictable mother. Sara Gordan’s prose work Natten (2022), tells the story of a mother who tries to prevent an unruly adolescent daughter from mismanaging her diabetes. A fundamental similarity between the works is how desperate care shapes the identity of the caregiver: their subjectivities become tied up in an intense, dyadic dynamic and highly calibrated towards and dependent on the care recipient. Through these works, the article explores the narration and practices of desperate care, discussing the subjectivity, responsibility, and hyper-attentiveness of desperate caregivers, as well as their defeats, when the dyadic dynamic is abandoned as the caregiver turns to institutions for help. The article also discusses the ethics of narrating desperate care: its ethical challenges, as well as how the narration can be regarded as an ethical care practice in itself.To be a caregiver while also being next of kin is emotionally charged. This article discusses narratives of care that goes beyond what Amelia DeFalco calls “caregiving at the limit”, i.e. care necessary for basic survival. In these narratives of what we call desperate care, not only is life at stake, but the care is anxious and urgent, partly done against the will of the care recipient, and the caregiver is exposed and vulnerable. To explore the concept of desperate care we analyze two contemporary Swedish narratives, in different media and from different perspectives. Marie Tillman’s graphic novel En trasig historia (2020) depicts a young girl, Mia, trying to care for a mentally ill and unpredictable mother. Sara Gordan’s prose work Natten (2022), tells the story of a mother who tries to prevent an unruly adolescent daughter from mismanaging her diabetes. A fundamental similarity between the works is how desperate care shapes the identity of the caregiver: their subjectivities become tied up in an intense, dyadic dynamic and highly calibrated towards and dependent on the care recipient. Through these works, the article explores the narration and practices of desperate care, discussing the subjectivity, responsibility, and hyper attentiveness of desperate caregivers, as well as their defeats, when the dyadic dynamic is abandoned as the caregiver turns to institutions for help. The article also discusses the ethics of narrating desperate care: the ethical challenges, as well as how the narration can be regarded as an ethical care practice in itself