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Burdens
of care Helping home caregivers to be mindful of their own health |
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Burdens
of care Helping home caregivers to be mindful of their own health |
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By
Mary Ann Hellinghausen Taking care of a loved one who is acutely or chronically ill or disabled can be exhausting, depressing, frustrating, and in many cases hazardous to the caregiver’s health. Just ask any of the more than 25 million Americans caring for an ill relative or friend at home. Those who provide strenuous caregiving have a depression rate six times higher than the general population. And more than half don’t get enough sleep, which can lead to other health problems, according to a survey from the National Family Caregivers Association (NFCA), a group based in Kensington, Md., that promotes public awareness of caregivers’ concerns and offers them support. Common problems Back problems, headaches, stomach and eating disorders are also common health concerns for caregivers, experts say. "We are asking families to do so much more, and we’re not giving them the means to do it," said Suzanne Mintz, NFCA president, who has cared for her husband—who has multiple sclerosis—for the last 25 years. "It’s making them more vulnerable to becoming patients themselves." Rebecca McGee, RN, a hospice nurse who teaches skills courses for caregivers through the Greater Houston Chapter of the American Red Cross, said severe fatigue is the most common problem for caregivers. "I’ve had people actually collapse on me. They’re just exhausted," she said. Isolating experience A belief that "nobody else can do this as well as me" tends to isolate caregivers in their homes and makes them reluctant to ask for help, McGee said. Nurses should always ask caregivers about exhaustion and depression and help caregivers find support and resources. "They need all the help they can get," she said. Dealing with the healthcare system—which sometimes makes caregivers feel "nobody’s paying attention"—is also stressful. "Stress leads to a weakened immune system and leaves you more vulnerable to autoimmune diseases," said Carol Levine, director of Families and Health Care Project at the United Hospital Fund of New York, a health services and philanthropic association. In a survey titled "Rough Crossings: Family Caregivers’ Odysseys Through the Health Care System," headed by Levine, home caregivers said they often felt invisible in the healthcare system. Nurses who treated them kindly and took time to listen were remembered with gratitude. "It goes back to the caring part of nursing," Levine said. "Nurses have become technical experts, which is great, but they may not appreciate how much the caring part means to the caregiver. Nurses can make a big difference in how [caregivers] feel about themselves and their roles." Treating caregivers
with respect and as part of the healthcare team is important, Mintz
said. "We’re not just weepy people sitting in the waiting room.
Teach us the right medical lingo. Teach us how to report symptoms. Recognize
that we’re part of the team, but because we’re family, there’s a lot
of emotion in everything we do." Nurses can ease the hardships on family caregivers by giving them concrete advice on how to care for patients once they leave the hospital. Things that seem basic to a nurse, such as how to change an occupied bed or check for bedsores, are foreign to most family caregivers. Teach the basics Celi Adams, RN, founder of Home Care Companions in San Francisco, once watched a woman change her adult son’s bed by draping his leg, which was dead weight, over her neck. "The fact she didn’t break her neck is a miracle," Adams said. "You need to teach [caregivers] the basics. You don’t send them out of the room when you’re giving a bath [to the patient]. You say, ‘Come here. This is how you do it.’ "The bottom line is: Teach these people absolutely everything you can think of. The more they know, the better things will go emotionally, psychologically, and physically," Adams said. Providing caregivers a safe place to complain about their problems and relieve their stress is also important to their health, said Priscilla Hartung, director of social services at Cancer Care Inc. of New York, a national support group. "Be able to listen to their pain and feelings, which may be anger and frustration directed toward the medical community and the patient, and don’t be judgmental," she said. Help caregivers prioritize their responsibilities so they can focus on what’s really important. "Help them find hope and energy to move on and move forward," Hartung said. And advise caregivers never to turn down help, even if they’re not sure what kind of help they need, Adams said. "If the question is ‘Is there nything I can do for you?’ the answer is always ‘yes,’ even if [the caregiver] doesn’t know exactly what that is." |
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||Related
sites|| Cancer Care Inc. A national toll-free counseling line, teleconferencing programs, and a resource guide, A Helping Hand. Call (800) 813-HOPE. The National Family Caregivers Association Information on caregiver support. Call (301) 942-6430. United
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