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Shouldering the Burden of Care
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Shouldering the Burden of Care

TW, a fifty-two-year-old Ohio woman, cares daily for her elderly mother. Shortly after TW's father died, TW's mother became increasingly forgetful and easily flustered. After several medical consultations, doctors diagnosed Alzheimer's disease. Within a few years, TW's mother required constant supervision, so she came to live with TW and her family.

Since TW could not afford a home health aid during the day, she reduced her hours and now works part time. Keeping her job is a struggle, but TW finds solace in it. Being unable to focus on her career frustrates her. A similar conflict arises regarding her family. TW senses they would like more time with her, just as she wants more time with them, but her current schedule does not allow it. TW strongly believes that she has a responsibility to care for her mother, but she finds little satisfaction in her caregiving role. She feels guilty about this.

In recent months, TW's mother has declined rapidly. She is more agitated and less aware of her surroundings. TW must take a more active role in helping her mother use the bathroom, bathe, and eat. As her mother's needs multiply, TW becomes more stressed and easily angered. She can't concentrate at work and has even less time and energy to give her husband and children. Her mother often does not recognize TW and cannot acknowledge or appreciate the care she gives. TW misses conversing with her mother and feels depressed.

TW's mother told TW on many occasions that she never wanted to be placed in a nursing home, but TW is now considering it. She has one brother who lives in Texas. He also has a career and family. He calls often and visits sometimes, but finds it difficult to get away. He strongly opposes nursing home care. TW's husband also is reluctant to place his mother-in-law in a nursing home, but he is more aware of the toll that caring for her takes on his wife. TW is reviewing the application process for a Medicaid-sponsored bed in a nursing home.

TW faces a dilemma. She can place her mother in a nursing home to ease her own burdens, despite knowing her mother did not want to live in one. Alternatively, she can respect her mother's stated wishes by continuing to care for her at home, despite the unforeseen personal and financial difficulties the situation causes her and her family. What aspects of this case are most important to help TW reach an acceptable decision?

Like many family caregivers—particularly those caring for a loved one suffering from dementia—TW has reached an impasse. Faced with her mother's inevitable decline, she wonders whether she should continue to care for her in her home. But the more important question is, can she?

Whether TW ought to continue to provide home care to her ailing mother hinges on her capacity to do so. In many cases, a family's ability to provide care reaches a critical point at which they no longer have the skills necessary to give adequate care, or the burdens of providing it overwhelm them. Nursing home placement then becomes the only viable option. TW's mother has reached a point at which she requires continuous supervision by a medical professional, and so, because of multiple reasons beyond TW's control, nursing home placement is necessary.

The burdens of caring for a chronically ill loved one are well documented. Caregivers consistently report feelings of frustration, anxiety, helplessness, depression, and exhaustion. They suffer physical problems, often linked to chronic stress. Financial strains beset them. Many spend a portion of their income or savings on caregiving expenses. A substantial number must take unpaid leaves of absence from work, work fewer hours, quit jobs, or turn down promotions in order to care for loved ones.

Despite these burdens, the majority of care for the chronically ill in the United States is provided in an informal family setting. Formal services are underused due both to prohibitive cost and to families' reluctance to take advantage...