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Eddie Taylor awoke one morning at his home in California unable to speak or to move the right side of his body, but able to understand other people around him. After 3 terrifying days in a hospital and 3 frustrating weeks in a stroke rehabilitation center, Eddie failed to improve. Because he no longer required hospital-level care, he became ineligible for Medicare hospital coverage. Since his spouse, James, was wheelchair-bound with crippling rheumatoid arthritis and unable to care for him, Eddie was transferred to a nursing home. Medicare did not cover the $245 per day cost. After 2 years, Medicaid began to pick up the nursing home bills. Much of the couple’s life savings—earned during the 50 years Eddie worked in a men’s clothing store—had been spent to allow Medicaid eligibility. Because Medicaid paid only $130 per day, few recreational activities were offered, and Eddie spent each day lying in bed next to a demented patient, who screamed for hours at a time. Unable to voice his complaints at the inhuman conditions of his life, he became severely depressed, stopped eating, and within 3 months was dead.

On high school graduation night, Lyle celebrated with a few drinks and drove to his girlfriend’s house. He lost control of the car, hit a tree, and suffered a fractured cervical spine, unable to move his arms or legs. After 9 months in a rehabilitation unit, Lyle remained quadriplegic. He returned home, with a home care agency providing total 24-hour-a-day care at a cost of $300 per day, not covered by insurance. Lyle’s father, a businessman, became increasingly angry at his wife, the principal flutist in the city’s professional orchestra, because she refused to leave the orchestra to care for Lyle. After 1 year and $110,000 in long-term care expenses, Lyle’s parents were close to divorce. One night Lyle’s father awoke in a cold sweat; in his dream, he had placed a plastic bag over Lyle’s head and suffocated him.

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INTRODUCTION

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Time and again physicians and other caregivers witness the tragedy of chronic illness compounded by the failure of the nation’s health care system to meet the social needs created by the illness. The crisis of long-term care is twofold: Thousands of families each year lose their savings to pay for the chronic illness of a family member, and long-term care often takes place in dehumanizing institutions that rob their occupants of their last remaining vestiges of independence.

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Long-term care includes those health, social, housing, transportation, and other supportive services needed by persons with physical, mental, or cognitive limitations sufficient to compromise independent living. The need for long-term care services is usually determined by evaluating a person’s impairment of activities of daily living (ADLs; e.g., eating, dressing, bathing, toileting, and getting in or out of bed or a chair) and in instrumental activities of daily living (IADLs; e.g., laundry, housework, meal preparation, grocery shopping, transportation, financial management, taking medications, and telephoning) ...

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