“The Loneliness of the Long-Term Care Giver”

Exerpt from, “The Loneliness of the Long-Term Care Giver” By Carol Levine
New England Journal of Medicine 1999.

“Care givers want education and training that recognizes their emotional attachment to the patient. Professionals seldom appreciate how much fear and anxiety complicate the learning of new tasks. Learning how to operate a feeding tube or change a dressing or inject a medication is hard enough for a layperson; care givers learn how to perform these procedures for the first time on a person they love. Fearful of making a mistake or simply upset by the idea of having to perform unaccustomed and unpleasant tasks, care givers may resist or fail, or persist at great emotional cost.

Months before my husband was ready to go home, a nurse insisted that I learn how to put on my husband's condom catheter. "I don't need to know this yet," I protested, "and besides, maybe he won't need it later." Ignoring our emotional state at the time, she forced me to do it (badly) until both my husband and I burst into tears. Later, when I complained to her supervisor, I was told, "We just wanted to break through your denial."

Families need emotional support. They frequently bring a patient home to a living space transformed by medical equipment and a family life constrained by illness. Privacy is a luxury. Every day must be planned to the minute. The intricate web of carefully organized care can unravel with one phone call from an aide who is ill, an ambulette service that does not show up, a doctor's office that cannot accommodate a wheelchair, an equipment company that does not have an emergency service. There are generally no extra hands to help out in a crisis and no experienced colleagues to ask for advice. Friends and even family members fade away.

If family care givers need education, professionals need it just as much. Education for doctors, nurses, and social workers should include understanding the needs of family care givers. Ideally, all professionals should have the experience of seeing firsthand what is really involved in home care. In-service programs can educate health care professionals about family dynamics as well as build communication and negotiating skills.
Family care givers must be supported, because the health care system cannot exist without them. And there is another compelling reason: Care givers are at risk for mental and physical health problems themselves.

Exhausted care givers may become care recipients, leading to a further, often preventable, drain on resources. Does my managed-care company realize, for instance, that during the past year it paid more for my stress-related medical problems than for my husband's medical care? "

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