Caring for a dying person at home is often an excruciatingly exhausting task for the caregiver. What kind of support do caregivers get in a society that is proud of its individuality? Does that support help the caregiver's transition to bereavement?
To find answers to these questions, Andrea Sankar, PhD, director of the medical anthropology program at Wayne State University, Detroit, and research scientist at the University of Michigan, did an in-depth ethnographic study of 1 6 caregivers. The study showed that the kinds of social support given to the caregiver "affirm the notion that the caregiver is not alone but instead is part of a larger social collectivity."
"By choosing to be intimately connected with death, those providing support are crossing into an area that in our society is outside the normal social boundaries," Sankar said. "Those who choose to participate in the caregiving along with the caregiver form a spontan- eous community reacting to the challenge and significance of impending loss."
Social support in the care of the dying person is basically of two types. One is aimed specifically at the dying person and is limited to brief visits or possible phone or letter contact. The other kind of social support takes on the task of helping, and those who help become part of the social support effort that aid in sustaining the caregiver through this difficult and demanding period.
"Those providing social support," according to Sankar, "offered basic instrumental and emotional assistance to the caregiver in a way that was extraordinary, that is, outside the boundaries of normal social interaction, in three specific ways: it was nonreciprocal; it allowed caregivers to relinquish some of their adult roles; and it was marked by a loss of the public/private distinction."
In her study, Sankar also found instances of negative support, ie, expected support that does not materialize. "The case of remarriage provides a particularly good example of how support or its lack demonstrated the potential supporter's relationship to the caregiver." Sankar noted that in all five cases of remarriage, the family of the dying person did not participate in the care or did so on a limited basis.
"Several factors might explain this finding," Sankar said, citing the intense intimacy of the caregiving experience, the difference between the family's involvement in an individual's first marriage and subsequent unions, or the fact "that all the remarried caregivers were women suggests that gender may have influenced this pattern."
"The research," Sankar said, "suggests that social support for the caregiver of a dying person is extremely important (in adjusting to bereavement)." This support, however, "is most effective when it serves to relieve the caregiver of competing adult roles. Those caring for dying spouses in a remarriage situation appear to be most at risk of receiving inadequate social support."
For more information, contact Linda Harootyan, The Gerontological Society of America, 1275 K Street, NW, Suite 350, Washington, DC 20005-4006; 202-842-1275.