The Loneliness of the Long-Term Care Giver
- Schilling, Carol
- Date of entry: May-26-2015
- Last revised: May-28-2015
Carol Levine began a roiling odyssey as a caregiver when a car accident left her husband paralyzed and in need of 24-hour care. She regards her husband’s survival as “a testament to one of American medicine's major successes — saving the lives of trauma patients.” But once he returned to their home, Levine encountered a healthcare system that was fragmented, chaotic, and inequitable. Unprepared to address chronic care, it remained oblivious to her needs as her husband’s primary medical “provider,” as they would say. Written nine years after the accident and eight years into her care giving, Levine’s essay recounts the stress and isolation she experienced attempting to navigate that system, to perform unrelenting chores, and to sustain her employment. Her job was, after all, the source of her husband’s managed care insurance, which regularly managed to leave Levine with unpaid bills. Even her work in medical ethics and healthcare policy could not help her locate the assistance she needed to assure the well being of her husband or herself. Or of other care-giving families.
NEJM (May 20, 1999) 340(20):1587-1590
New England Journal of Medicine