Identities in Transition: Women Caregivers in Bereavement

Abstract

Population aging and longevity due to medical advances over the past few decades have meant that the approximately 44 million caregivers in the United States and eight million caregivers in Canada must provide more intensive levels of care and for longer periods of time. Consequently, caregivers are often profoundly affected by their caregiving role in emotional, psychological, physical, and financial ways. Thirty years of research on this population have helped to create a caregiver profile and identify the significant challenges for caregivers. One area explored to a much lesser extent is the postcaregiving period, when the caregiver transitions into a period of bereavement. This period can be particularly challenging for caregivers given the commitment inherent in the caregiving process. Research has shown that the emotional reactions of caregivers as well as practical challenges do not end with the death of the care recipient. In fact, complex realities, tensions, and responses continue well after the death into the postcaregiving period. This study of bereaved women caregivers explored their lived experiences in the postcaregiving phase. One central theme emerged and suggested that the experience of caregiving had an effect on the caregivers' identities, which then influenced their bereavement processes and experiences.

What Does Death Preparedness Mean for Family Caregivers of Persons With Dementia?

“…Expecting and recognizing emotional responses such as anticipatory grief, guilt, anger, and ambiguous loss 38,67,71,76 Complexity related to PwD's neurological decline, unpredictable trajectory, prolonged grief from "psychological death" (eg, when meaningful communication ceased), often "surprising" intense grief with physical death 39,86,92 Receiving information about types/stages of grief to validate and normalize emotions experienced or expected 79,97 Supports feelings of control, ability to cope with emotions, and potential "reactivated grief" 47,53,56,65,74,83 3. Accessing and appraising supports needed to manage, plan and provide care around death Seeking, receiving, having access to experts, role models, and friends for psychosocial (eg, empathetic listening, validation, decision-making, and socialization) and practical support (eg, assistance with household chores, financial paperwork, providing physical care, and maintaining a bedside vigil) in line with preferences 41,77,84,90,94,95,99 Appraising personal capacity and seeking training/help to feel confident around EOL care/affairs 30,85,92 Receiving psychosocial support and communication with HCPs integrated into care of PwD to feel less alone in role, competent and in control of care 21,40,81,82,86,87,89,93 Resolving conflicts and strengthening support networks 23,51,70,83 4. Organizing affairs and completing tasks in advance Organizing legal and financial affairs, completing funeral, ritual and burial planning to avoid decision-making and decreasing tasks required at time of death when grief inhibits concentration/decision-making 23,…”

“…Death acceptance, 'coming to terms' refers to peaceful awareness of physical death and losses approaching and unavoidable, with uncertain timing 30,31,35,63 Reframing situations, making best of the time left, and identifying positive aspects of death 35 Acknowledging need for adaptation and assimilation of new reality/identity (which cannot be changed) without PwD 35,82 Intentionally making the best of time left, focusing on enhancing PwD comfort 21,38 Accepting that caregiving role/identity is fulfilled, and they are facilitating a good life and death for PwD to the best of their abilities 38,67,82 Self-blaming, guilt or avoidance of death interferes with acceptance and preparedness 38 6. Reflecting on caregiving, finding meaning, a 'silver lining'…”

“…Reconstructing meaning of life and death through 'sense-making' of loss, uncertainty and death and existential beliefs around human life, purpose, a higher power, freedom and responsibility 64,78,82 Benefit finding (reframing) and progressive identity change (adaptating to a new role) to support self-organization, self-efficacy, and control 78,82,90 Finding meaning/infusing structure into uncertain situations (ie, death) through spiritual or religious rituals 40,41,51,78 Acknowledging spiritual questions such as "why did this happen," "where is God in this situation," "what is the meaning of suffering," "where will my loved one go when they die" and aiming to resolve concerns 47,97 (continued) (information and knowledge), (2) affective (emotionally preparing), and (3) behavioral (tasks). Study findings from our concept analysis aligns with and clarifies understanding of preparedness dimensions, content areas, and conceptual relationships outlined in the Preparedness Framework.…”

Intergenerational Care in the Context of Migration: A Feminist Intersectional Life-Course Exploration of Racialized Young Adult Women’s Narratives of Care

“…A detailed description of interviews and lifelines is presented here as they make up the data sourced for the current article. During the first interview, after gaining a broad understanding of participants’ care contexts and asking them to map out their social connections (Campbell et al, 2019), the researcher asked participants to draw a “careography,” an innovative lifeline tool developed by Orzeck (2016) for eliciting conversations about carers’ important turning points. Using markers and a large piece of paper, carers created a lifeline of significant events in their own lives, as well as, in a parallel lifeline, significant events in the life of the care receiver (Orzeck, 2016).…”

“…During the first interview, after gaining a broad understanding of participants’ care contexts and asking them to map out their social connections (Campbell et al, 2019), the researcher asked participants to draw a “careography,” an innovative lifeline tool developed by Orzeck (2016) for eliciting conversations about carers’ important turning points. Using markers and a large piece of paper, carers created a lifeline of significant events in their own lives, as well as, in a parallel lifeline, significant events in the life of the care receiver (Orzeck, 2016). These lifelines provided a visual representation of participants’ care trajectories over the course of many years and facilitated conversations linking time and events.…”