Dec. 25, 2000 -- During most of Marty Sandfelder's extended battle with a rare blood malignancy, he did not need extensive home care. But as his condition worsened, he was unable to climb the stairs to his bedroom. By then, emotions were running so high and decisions were needed so quickly that his family had little input. Instead, an oncologist and a home health nurse did much of the planning, recalls Sandfelder's wife, Paula.
"I knew there was no way I could move him or bathe him," she tells WebMD. "I thought he'd be devastated at the sight of a hospital bed in the family room. But he saw it and breathed a sigh of relief and said, 'I don't ever have to deal with those stairs again.'"
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Until her husband's final days, Paula Sandfelder didn't believe they needed to think about home care. In retrospect, she admits she should have sought help earlier. Indeed, more than one in every four adults was involved in caring for sick friends or relatives during the past year, according to the National Family Caregivers Association. But experts fear that most are unprepared for the caregiver role that often is thrust upon them.
"At discharge, families are told, 'See a doctor in two weeks and here are the meds,' but that is not a plan," says Jody Pelusi, a nurse practitioner who last month gave a presentation on caregiving at the Oncology Nursing Society's annual meeting in Charlotte, N.C. "When somebody is diagnosed, the rest of the family immediately says, 'Oh my God, I don't know anything about this.' Having a plan calms people and educates them about the disease process. It also helps them prioritize, which reduces the feeling of being overwhelmed, and shows that everybody has something to offer.
"It is not overburdensome if everybody does something once a week -- paying the bills, running to the pharmacy. The critical focus should be, 'How, as a team, can we make this work?'"
The demands of home care can vary widely, from maintaining high-tech feeding devices and IVs to helping with activities of daily living, such as cleaning the house, cooking meals, and assisting with pain management during a patient's end stage of illness.