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Healthy You Archives |
Coping with Illness
Caring for Someone With a Chronic DiseaseRemember that the caregiver needs care, too!
A devoted caregiver — Vincent Fornieri (left) designed a home for his parents, Christopher and Josephine, in Whitehall to ensure they’d be well cared for. He and his son have their own space there. What Are Your Care Options?Home care is provided by nurses, home health aides, physical therapists and other professionals in the patient’s home. It’s ordered by the patient’s physician, often as a continuation of hospital care. Palliative care focuses on controlling pain and other symptoms and improving quality of life for anyone with a life-altering illness. It is not necessarily end-of-life care. “We’re here to help people deal with the physical, emotional and spiritual effects of their illness,” says Ruth Fillebrown, R.N., director of Lehigh Valley Hospital and Health Network’s outpatient palliative care program. “We connect you to community resources, help you make informed decisions and serve as an extension of your doctor’s care.” Hospice care is palliative care in the last six months of life. The hospice team helps patients and their families find comfort and meaning in this life stage. “Sometimes just knowing what to expect can lessen anxiety and help people focus on what’s most important,” Fillebrown says. “Hospice care is about living.” Now, 45 years later, Fornieri prepares all the meals for his parents, who live with him. His mother, age 77, has ongoing heart and lung problems. His father, Christopher, 92, recently had a pacemaker installed. An only child, Fornieri has structured his life around his parents’ needs. He moved them from Brooklyn to Whitehall 10 years ago, building a home for them with space for himself in the basement. He limits his construction management work to local jobs so he can be home every night. He wears numerous hats: short-order cook (preparing meals for different diets)…health care professional (overseeing multiple medications, monitoring blood sugar and giving daily insulin injections)…special chauffeur (driving to numerous doctor’s appointments with wheelchair and oxygen in tow)…and household manager (shopping, paying bills and managing health care finances). All this while trying to spend meaningful time with his 11-year-old son, Chris, who stays with Fornieri every other week. It’s a typical scenario for people coping with chronic disease, says Lorraine Gyauch, R.N., nurse educator in the John and Dorothy Morgan Cancer Center at Lehigh Valley Hospital. The key, she says, is to find resources to help you with practical issues as well as emotional needs. “Caregiving is stressful when those providing the care don’t know what to expect or how to solve problems,” Gyauch says. “Being out of control can make them feel vulnerable or even angry with the sick person. This is normal.” Gyauch teaches people how to solve problems in her caregiver support course. Some strategies are concrete, like what to do with a fever or where to find financial help. Others deal with communication skills, stress management and relaxation techniques. These tools are valuable whether you’re facing end-of-life issues or will be caring for someone for many years. “It’s important to maintain normalcy in the family,” she says. “Go to the movies or out to dinner. Write down details about the patient’s routine so others can help. Even the smallest child can bring someone a glass of water. Those who feel more comfortable sharing the burden are able to be better caregivers.” Vincent Fornieri recharges by bicycling and playing tennis and racquetball with Chris. He’s in a golf league and escapes to faraway places by reading fiction. His friends keep him going with weekly dinners and laughter. He also gets help through Lehigh Valley Home Care. Staff members visit his mother regularly, and a telemonitor transmits her vital signs to the home care nurses every day. “The telemonitor gives us a sense of security,” Fornieri says. “Mom has a tremendous will to live, and it’s comforting knowing someone is out there watching over us.”
Want to Know More? For information about home care, hospice and palliative care, call 610-402-CARE. This page last updated 2/12/08 04:08 PM
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Just for Women
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Raising a Family
Heart of Healthy You
Protecting Your Health
Coping with Illness
Aging Well
Keeping Up to Date
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