Answering a Long-Distance Call for Help : Health: Caring for a sick relative is tough enough. Trying to do it from far away can be traumatic, experts say.
A young mother in Connecticut shuttles back and forth to Florida to attend to her ailing parents: Her 82-year-old father has leukemia, her 69-year-old mother a painful, rare autoimmune disease. Both die in a six-week period.
A couple from North Dakota is on vacation in a remote part of Idaho when the husband has a heart attack and is flown for emergency surgery in Utah. While he recuperates during the next month, his family must travel back and forth between the two states.
A college student from Baltimore has an asthma attack in Boston and winds up in an emergency room. Her parents, who are traveling in Israel, must decide whether to cancel the rest of their trip and return to the United States.
Coping with illness long distance is a growing problem for many American families as they fan out across the country and around the world. Increasing mobility makes it more difficult to communicate in the event of a medical crisis or chronic illness.
Smaller families impose more responsibilities on fewer people. And with the graying of the population--the fastest-growing age group is “eightysomething”--as many as four generations can be separated by thousands of miles.
The situation is further complicated by the staggering array of medical options available to treat patients and prolong their lives. Distance heightens the tension in emotionally difficult choices, especially about high-tech treatments.
“Aging and the mobility of our society are making all this into a national issue,” says Lucy Y. Steinitz, executive director of Jewish Family Services in Baltimore.
“Care-giving is not only hands-on but involves coordination, financial backup and emotional assistance,” she adds. “Long distance, it’s very frustrating. There are studies that demonstrate loss of productivity in the workplace, higher absenteeism and departure from jobs by care-givers responsible for a relative’s health.”
Each case is different, but there are common concerns when a medical crisis occurs and must be handled from miles away. Among them:
* How to communicate with a hospital, nursing home or busy medical specialists.
* How to judge medical treatment--or conflicting medical judgments--from a distance.
* How to plan for medical emergencies.
* How to arrange for a family member or friend to seek medical care or go into a nursing home when the person is against it.
* How to know when it’s time to drop everything and go to the sick person’s bedside.
* How to redefine your relationship with the family member once you become the long-distance care-giver.
* And how to balance day-to-day concerns with the pressing medical needs of that faraway person.
While there is no simple, remote-control solution, medical specialists and families who have already traveled the long-distance medical road can provide guidance to those who must negotiate the sometimes treacherous route.
Most of the time, parents concentrate more on what courses their children will take when they go off to college than on what kind of medical care is available if a crisis occurs.
Elaine Weinstock of Baltimore remembers getting a call several years ago while she was traveling in Israel informing her that her 18-year-old daughter, a freshman at Boston University living away from home for the first time, was in an emergency room with a severe asthma attack.
“It was frightening to have to handle it long distance. My reaction was hysteria,” she recalls. In the end, the parents did not rush home and were able to manage their daughter’s care from afar. “Knowing that my daughter was going away to college and that she had a chronic illness, I should have concentrated ahead of time less on where she was going to live and what courses she was taking and more on identifying a physician,” Weinstock says. “You may be lulled into a false sense of security when a child is an adult going off to college.”
Joann Rodgers, a medical writer and director of media relations for Johns Hopkins Medical Institutions, found out how difficult it is to take care of a sick child from afar when her freshman son wound up in the Duke University infirmary with a case of mononucleosis at exam time. She monitored his medication from home, double-checking with her local internist on the treatment he was getting. “It’s very hard to let go. . . . I couldn’t put my hand on his forehead. I learned from that experience to line things up ahead of time,” she says.
When her second son went off to UC Santa Cruz, Rodgers arranged for a score of referrals, everything from a pediatrician to an oral surgeon. “He never had a use for them, but it made everyone feel better,” she says.
Medical concerns may also arise with younger children going to camp or visiting out-of-state grandparents. Divorced parents whose children shuttle back and forth should share complete medical information on their health, including immunizations.
Suggestions: Check with a physician for possible medical referrals in the city where your child will be. Also check with the medical society, friends or acquaintances there. See what services the college or camp health facility provide. Make sure insurance coverage is in order and that your child, and those caring for him or her, are aware of it. For minors, sign a permission letter for obtaining emergency medical care. Make sure information about your child’s medication is available.
The aging of America puts more pressure on families with elderly relatives, but time and distance may encourage the ostrich approach until an emergency strikes.
“Any time a close family member is seriously ill, it is a direct confrontation with your own life. It’s a change, another level of growing up,” says A. Steven Cain, a cardiovascular surgeon in Ogden, Utah.
Being far away complicates this process. “There is always conflict about what to do,” Cain says. “How do you leave your own profession and own family and go there? Should you jump on the first plane and be completely devoted or wait? Distance dislocates you.”
Janet Kurland of Baltimore’s Jewish Family Services advises finding an occasion when the family is together “to get members to sit for an hour or two to consider options. We have found frequently that in every family there is a significant person a parent will listen to. Sometimes it’s a child, sometimes a grandchild, a neighbor, a doctor. Whoever it is, use that person to help effectively plan and work with whoever needs the help.”
There is sometimes the temptation to move elderly relatives after an incapacitating fall or loss of a spouse. “Don’t kidnap the parent and geographically bring them away from where they live,” she says. “If there’s any possibility, help them stay.”
Suggestions: Get your elderly relative’s medical care information down on paper. Who are the doctors? Which hospitals are nearby? What medicine is the relative taking and when? Who will pay?
Look ahead at possible living or medical arrangements should one member of an elderly couple die or a person living alone become incapacitated. Let the elderly share in the decision-making. Make sure that you understand their wishes in terms of life support and care in the event of a terminal illness or coma. When in doubt, consult a lawyer as well as family doctors about procedures, such as living wills, in your state.
Communication about a patient’s condition runs most smoothly if families, particularly large ones, appoint a representative to talk with the doctor or nurse in charge.
“It helps if there is one spokesman for the family who makes the calls and is responsible for telling everyone else,” says Gary V. Petersen, a Utah cardiologist.
“It works better for a family and patient if at least one representative is there in person. If everyone is from out of town, split the travel duty,” suggests Mary Wakefield, cardiovascular program coordinator for McKay-Dee Hospital in Ogden.
Many out-of-town family members want to be on hand for major surgery. But if time is limited, “I encourage them, if all goes well, to leave within a day or two, go home and then come back, especially if the patient lives alone. It’s important for family to be available when a patient goes home,” Wakefield says.
Suggestions: If you delegate responsibility to a family member on the spot, don’t micro-manage from afar. Get regular updates, but don’t expect a blow-by-blow report, particularly if things aren’t going well.
If you are the primary contact for the family, don’t be afraid to ask questions of doctors and hospital personnel. If you have concerns about the care, encourage the patient to get a second opinion or even to switch doctors. Most hospitals and medical facilities have a social worker or patient advocate to help work with the hospital system and arrange follow-up care after discharge.
There are services available to help manage long-distance medical care, particularly for elderly people separated from their families.
Work-Family Elder Directions of Boston and the Partnership Group Inc. of Lansdale, Pa., are two companies that coordinate national network services that can be purchased by businesses as a benefit to employees.
When a problem arises, employees are referred to local agencies that provide professional telephone consultations to outline medical options available in that area, including home health care, hospices, nursing homes, counseling and financial support.
“Say an employee in Oshkosh has a mother in suburban Baltimore, he is referred to us for help. We help cut through the bureaucracy long distance, doing the screening and investigation for the employee. Then it’s up to the employee to follow up,” says Jewish Family Services of Baltimore’s director Steinitz.
The agency is a contractor for both networks. It also participates in an elder support network that provides direct home-based services.
Hands-on help can also be purchased from private case managers-professionals such as social workers and nurses who take on the management and coordination of an individual’s care. Fees range from about $35 to $100 per hour. According to the Johns Hopkins Medical Letter, services include assessing health care needs, coordinating medical services, providing home care, transporting patients to medical appointments, checking medications and filing insurance forms.
Aging Network Services Inc. of Bethesda, Md., is a private service that deals with families with aging parents and adult children living in different cities. For a fee, the network can locate resources around the country, connect you with one of 250 social workers to manage your case or work locally with individuals and businesses in providing direct care services and counseling.
Suggestions: Contact local or state agencies on aging, senior centers or church groups or hospitals for information on available public and private medical and social services for the elderly. Government agencies also provide at-home assistance for the elderly.
Valerie Schirmer was 28 years old, married and living in Darien, Conn., with a 1-year-old son when her parents, who had retired to Sarasota, Fla., contracted life-threatening illnesses at about the same time. For more than a year, she found herself commuting between their sickbeds and her home, trying to satisfy everyone but herself.
“It’s very isolating. You live in one place, but your heart and mind are someplace else. There’s so much guilt involved. I was physically sick and exhausted at the end, with colitis and anemia,” Schirmer says.
“It’s all right to ask for help. Because I was gone so much, I didn’t want to bother my husband or friends. They said, ‘By God, you handled it so well,’ which really wasn’t true. By the time my parents died, I felt pretty much alone. It’s hard when your entire life revolves around the telephone.”
Care-givers need to be taken care of, too. Says Baltimore’s Kurland: “More than likely, one family member is the major care-giver in a family. Help that person so that he or she doesn’t burn out, too.”
Suggestions: If you’re a commuting care-giver, reach out to friends and family members for emotional and practical support. Set limits on what you can do. Give yourself enough time with the patient to get things organized to run smoothly in your absence. And give yourself enough respite time at home to recuperate between visits.
