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.