When Caregiving Requires the use of High Technology

Family life also can suffer when caregiving requires the use of high technology within the home. Slightly more than half of caregivers report providing medical or nursing care such as cleaning feeding tubes, caring for colostomies, and giving injections. John D. Arras and Nancy Neveloff Dubler suggest that this invasion of the home by hightech medical procedures, mechanisms, and supporting personnel exerts a cost in terms of important values associated with the notion of home. As they explain:

How can someone be truly “at home,” truly at ease, for example, when his or her living room has been transformed into a miniature intensive care unit?. . . Rooms occupied by the paraphernalia of high-tech medicine may cease to be what they once were in the minds of their occupants; familiar and comforting family rituals, such as holiday meals, may lose their charm when centered around a mammoth Flexicare bed; and much of the privacy and intimacy of ordinary family life may be sacrificed to the institutional culture that trails in the wake of high-tech medicine.

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Finally, caregiving brings with it numerous psychological costs, especially for the 50% of caregivers who report that they had no choice about taking on this role. Caregivers can easily become depressed when their efforts can’t stop or even slow the disease process. This is especially true when caregivers must routinely inflict painful treatments on their charges or when the burdens of caregiving are unceasing, as when a parent must suction the lungs of a child with cystic fibrosis hour after hour, day after day, to keep the child from dying. Moreover, as this example suggests, caregivers also often bear the enormous psychological burden of being directly responsible for another person’s life. In fact, family caregivers are now expected to manage in the home—often with little training or technical support—technology considered too complex for licensed practical nurses to manage in hospitals. Finally, caregivers of persons younger than themselves face anxieties about what will happen to their charges if the caregivers die first.