The Key is Teamwork
By Lori Solomon
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.'"
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."
Barg says families must make many adjustments. There are role changes, such as when a parent or spouse becomes a patient, and the possible economic impact if the patient or caregiver must, of necessity, change working patterns. Caregivers also find themselves questioning whether they have found the right resources or chosen the right course of treatment -- a source of significant stress for some. Then there are the challenges of communicating effectively with the health care team as well as other family members.
Thus, it is in a family's best interest to act as a team and quickly design a care plan that meets its needs. "The window of openness to buy books and read articles is in the early stages of adapting to and coping with an illness," says Peter Houts, PhD, professor emeritus of behavioral sciences at Pennsylvania State University College of Medicine. "When the patient is in the midst of treatment and struggling, [family members] are not information seekers, they just feel overwhelmed. The time to reach people is early."
Houts advises family members of cancer patients to seek support and resources from organizations such as the American Cancer Society, which published his book, Caregiving -- A Step-By-Step Resource for Caring for the Person with Cancer at Home.
As the U.S. population continues to age, more responsibility falls upon the shoulders of family members. Barg and others see the need for policy changes at the federal level in order to relieve families and a financially strapped healthcare system of the burden of caring for ill family members at home. They are encouraged, however, by the growth of community-based support for patients and caregivers, including the rising number of hospice and faith-based programs. While the availability of these varies greatly by community, all agree they can offer very powerful support infrastructure to families struggling with home care.
"Out of the best of intentions, caregivers can wear themselves out and undermine their ability to take care of the patient," says Houts. "They think, 'Only I can do this.' Make the caregiver aware that their needs are important to the patient. It is a wonderful conundrum because they are being truly altruistic. Get their attention by saying, 'You'll be a better caregiver if ...'"
Caregivers, especially those who themselves are elderly or chronically ill, should be advised to network and not be afraid to ask for help.
"Caregivers often have physical problems of their own," says Barg. "We know that elderly caregivers are much more at risk and may find themselves more ill after several months [of caring for a loved one]. They may neglect their own healthcare, nutrition, and exercise."
A reluctance to accept home care and financial barriers also prevents families from accessing home care services, says Jane Levy, director of patient assistance programs for Cancer Care, a New York nonprofit group. Levy says most private insurance plans will cover limited home care services for short periods. Government-sponsored programs, such as Medicare and Medicaid, those offered under Older Americans Act (administered through Area Agency on Aging offices) and by Veterans Affairs, cover home care for those who meet certain eligibility criteria, usually if they use preferred agencies.
"Because everybody is [eventually] going to be a caregiver, there is a need to start doing caregiving classes before it happens," says Pelusi, who has developed an eight-week course. "There should be a good assessment up front. Who is where and what are their strengths? In the long run, a written document saves everybody time because there is a direction."
Lori Solomon is an Atlanta-based freelance writer and regular contributor to WebMD.
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