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.'"
Brenda Della Casa had been seeing her primary care physician for two years
and had brushed off her concerns about getting rushed care - until she had a
health scare she couldn’t ignore. She told her doctor she was experiencing
terrible back pain and stomachaches. Her doctor checked her, said she was fine,
and sent her on her way.
Five days later, Della Casa, an author and dating coach in Chicago, was
traveling and had pains so severe she could barely move. When she received a
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.
A survey released this fall by the National Family Caregivers
Association estimates that nearly 54 million Americans are caregivers -- twice
as many as previously had been thought -- and that men are increasingly
providing care to family members.
"Caregiving has changed dramatically," says Fran Barg,
PhD, director of the Family Caregiver Cancer Education Program at the
University of Pennsylvania School of Nursing. "The patient is discharged so
quickly, and the patient is sicker at home with more complex technological
needs. The family is also committed elsewhere -- raising kids, working full
time, and lots of geographic distance these days -- [making for] fewer
resources within the family."