This has been the persistent pattern of how modern society has dealt with old age. The systems we’ve devised were almost always designed to solve some other problem. As one scholar put it, describing the history of nursing homes from the perspective of the elderly “is like describing the opening of the American West from the perspective of the mules; they were certainly there, and the epochal events were certainly critical to the mules, but hardly anyone was paying very much attention to them at the time.”
The next major spur to American nursing home growth was similarly unintentional. When Medicare, America’s health insurance system for the aged and disabled, passed in 1965, the law specified that it would pay only for care in facilities that met basic health and safety standards. A significant number of hospitals, especially in the South, couldn’t meet those standards. Policy makers feared a major backlash from elderly patients with Medicare cards being turned away from their local hospital. So the Bureau of Health Insurance invented the concept of “substantial compliance”—if the hospital came “close” to meeting the standards and aimed to improve, it would be approved. The category was a complete fabrication with no legal basis, though it solved a problem without major harm—virtually all of the hospitals did improve. But the bureau’s ruling gave an opening to nursing homes, few of which met even minimum federal standards such as having a nurse on-site or fire protections in place. Thousands of them, asserting that they were in “substantial compliance,” were approved, and the number of nursing homes exploded—by 1970, some thirteen thousand of them had been built—and so did reports of neglect and mistreatment. That year in Marietta, Ohio, the next county over from my hometown, a nursing home fire trapped and killed thirty-two residents. In Baltimore, a Salmonella epidemic in a nursing home claimed thirty-six lives.
With time, regulations were tightened. The health and safety problems were finally addressed. Nursing homes are no longer firetraps. But the core problem persists. This place where half of us will typically spend a year or more of our lives was never truly made for us.
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ONE MORNING IN late 1993, Alice had a fall while alone in her apartment. She wasn’t found until many hours later when Nan, who was puzzled at not being able to reach her by phone, sent Jim to investigate. He discovered Alice laid out beside the living room couch, nearly unconscious. At the hospital, the medical team gave her intravenous fluids and a series of tests and X-rays. They found no broken bones or head injury. Everything seemed okay. But they also found no explanation for her fall beyond general frailty.
When she returned to Longwood House, she was encouraged to move to the skilled nursing floor. She resisted vehemently. She did not want to go. The staff relented. They checked her more frequently. Mary increased the hours she spent looking after her. But before long, Jim got a call that Alice had fallen again. It was a bad fall, they said. She’d been taken by ambulance to a hospital. By the time he got there, she had already been wheeled into surgery. X-rays showed she’d broken her hip—the top of her femur had snapped like a glass stem. The orthopedic surgeons repaired the fracture with a couple of long metal nails.
This time, she came back to Longwood House in a wheelchair and needed help with virtually all of her everyday activities—using the toilet, bathing, dressing. Alice was left with no choice but to move into the skilled nursing unit. The hope, they told her, was that, with physical therapy, she’d learn to walk again and return to her apartment. But she never did. From then on, she was confined to a wheelchair and the rigidity of nursing home life.
All privacy and control were gone. She was put in hospital clothes most of the time. She woke when they told her, bathed and dressed when they told her, ate when they told her. She lived with whomever they said she had to. There was a succession of roommates, never chosen with her input and all with cognitive impairments. Some were quiet. One kept her up at night. She felt incarcerated, like she was in prison for being old.