Sick To Death > Chapter 1 > Perspective: The Loneliness of the Long-Term Care Giver

Sick To Death book cover This extract from the online edition of Sick to Death and Not Going to Take It Anymore! is used with permission.

Perspective: The Loneliness of the Long-Term Care Giver

Carol Levine

On the icy morning of January 15, 1990, my husband lay comatose in the emergency room of a community hospital after an automobile accident. . . . My husband did survive. . . . But he will never walk, and he is not the same person in any sense. . . .

Although I worried most about his mental functioning, it is his body that has recovered least. He is totally disabled and requires 24-hour care. He is incontinent of bladder and bowel. He is quadriparetic, with mobility limited to the partial use of his left hand. (His right forearm was amputated. . . .)

During my nine-year odyssey, I stopped being a wife and became a family care giver. In the anxious weeks when my husband was in the intensive care unit, I was still a wife. Doctors and nurses informed me of each day's progress or setbacks and treated me with kindness and concern. At some point, however, when he was no longer in immediate danger of dying, and as the specialists and superspecialists drifted out of the picture, I became invisible. Then, when the devastating and permanent extent of his disabilities became clear to clinicians, I became visible again.

At that point, I was important only as the manager and, it was expected, the hands-on provider of my husband's care. In retrospect, I date my rite of passage into the role of family care giver to the first day of my husband's stay in a rehabilitation facility, a place I now think of as a boot camp for care givers. A nurse stuck my husband's soiled sweat pants under my nose and said, "Take these away. Laundry is your job.". . . The nurse's underlying message, reinforced by many others, was that my life from now on would consist of performing an unrelieved series of nasty chores.

The social worker assigned to my husband's case had one goal: discharge. I was labeled a "selfish wife," since I refused to take him home without home care. "Get real," the social worker said. "Nobody will pay for home care. You have to quit your job and 'spend down' to get on Medicaid." . . .

When I brought my husband home, he had undiagnosed severe sleep apnea (which caused nighttime screaming), undiagnosed hearing loss, and poorly treated major depression. The first few months at home were nightmarish. Since the problems had not been diagnosed correctly, much less treated, I did not know where to turn. . . .

In addition to holding a full-time job, I manage all my husband's care and daily activities. Being a care manager requires grit and persistence. It took me 10 days of increasingly insistent phone calls to get my managed-care company to replace my husband's dangerously unstable hospital bed. When the new bed finally arrived - without notice, in the evening, when there was no aide available to move him - it turned out to be the cheapest model, unsuitable for a patient in my husband's condition. In these all-too-frequent situations, I feel that I am challenging Goliath with a tiny pebble. More often than not, Goliath just puts me on hold.

Being a care manager also takes money. I now pay for a daytime home care aide and serve as the night nurse myself. . . . Home care aides, disposable supplies, and most forms of therapy are not covered, because they are "not medically necessary." My husband recently needed a new customized wheelchair, which cost $3,700; the managed-care company paid $500. Medicare, his secondary payer, has so far rejected all claims. No one advocates on my husband's behalf except me; no one advocates on my behalf, not even me.

I feel abandoned by a health care system that commits resources and rewards to rescuing the injured and ill but then consigns such patients and their families to the black hole of chronic "custodial" care. . . .

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.

Excerpted with permission from Levine C. 1999. The loneliness of the long-term care giver. N Engl J Med. 340:1587–1590. Copyright © 1999 Massachusetts Medical Society. All rights reserved.