The strains of long-distance caregiving

When Jacqueline Byrnes moved to Port St. Lucie, Fla., last year, her elderly mother seemed to be in good health. "We knew she was getting older, but she's spunky, she's independent, we thought it would be fine," Byrnes, 47, said. "And then it hit."

Only months after the move, Byrnes' mother, Margaret Rietvelt, 79, was diagnosed with cardiac problems requiring a pacemaker and blood thinners. In February, the East Patchogue resident had a pulmonary embolism, requiring emergency surgery. Byrnes flew back to Long Island following the surgery but, after a week, had to return to her job as a social worker. "It was very hard," she said.

"I think the hardest part is the not knowing," Byrnes said of her long-distance concerns. "She's going to sleep alone at night. Is she OK? What is she not telling me? You just don't know."

The National Institute on Aging estimates that as many as 7 million Americans live an average of 450 miles from a family member for whom they have primary care responsibility. The problem may be particularly prevalent here because "many children cannot afford to live on Long Island," said Jolene Boden, Long Island district director for JASA (Jewish Association for Services for the Aged), a not-for- profit social service agency affiliated with the Jewish Federation.

Long-distance caregivers who were interviewed say they are involved in a constant balancing act, forced to make choices between often-critical obligations in two places. In flusher times, some of the stress of long-distance caregiving might have been mitigated by hopping a plane or hiring more help, but current economic realities have made a tough situation tougher still.

"The fares go up, you may have to rent a car, and there's no tax deduction for taking care of a parent," Byrnes said. And missing work means missing pay, with a dose of insecurity in a soft job market.

The National Alliance for Caregiving (caregiving.org), a not-for-profit agency for caregivers, estimates that long distance caregivers spend on average $8,700 a year on caregiving expenses. Nearly half of those surveyed in a poll last year reported increased financial worries and 38 percent said they had reduced or stopped saving for their own future. "The No. 1 problem [for long distance caregivers] is finances," said Robyn Berger-Gaston, division director, Youth, Senior and Intergenerational Services for the Family Service League in Riverhead. "Unfortunately, the amount of money people have can make a huge, huge difference."

In many cases, long-distance caregivers may be employed but no longer have extra funds to pay for help, frequent visits or other expenditures that would allow them to feel secure while far away. It's even more difficult for the unemployed who may be finding it hard to pay for their own necessities. And a study by the U.S. Department of Health and Human Services showed that 35 percent of caregivers are over age 65 themselves and may be struggling with retirement on a tight budget, according to the National Alliance for Caregiving survey.

If the caregiver can afford it, experts and families agree that a geriatric care manager can be immensely valuable by organizing home care and referring families to services when there's a medical emergency. "They don't come cheap, but they can have information that a family really needs," Berger-Gaston said.

Byrnes has found a degree of comfort with her situation because her mother is still active and has a well-established support system of friends in case of an emergency. A social worker from JASA visits Rietvelt every other week and phones her daily.

And Rietvelt said she's content to stay on Long Island. She brings treats to her friends and neighbors, walks on the beach, enjoys music and familiar surroundings. "I love my mementos, and I have a very cozy apartment," she said.

While it may seem an obvious idea to simply move a parent closer to family, experts said that uprooting the elderly is rarely a good idea because they end up feeling isolated with no friends and family members who are busy with their own lives.

Caregivers find that helping themselves is key to being able to cope with the stress of long-distance caregiving.

Westhampton resident Barbara Lade, 61, said that support programs at the Family Service League saved her life 10 years ago when she became overwhelmed with caring for parents. Her 86-year-old mother has dementia and lives in Albany.

"I was ignoring my home, my husband and my health," Lade recalled. She took a friend's advice and got help from a caseworker who showed her the value in setting priorities. "I was in all directions," Lade said. "Now, I look at my prioritization chart and say, 'What can I get rid of?' "

Although she has an understanding boss, she tries to set limits on when and how often to make the 51/2 hour drive to visit her mother. "I learned to back away from Mom a little -- to say, 'You're all right. I'm not coming up right now.' "

In addition to helping her find support programs and services, Lade said that the most critical thing her caseworker has done for her is to remind her to take care of herself. "I take yoga, I remember to laugh," she said. Lade advises others who are in similar situations to, "Give yourself a break. . . . It's learning to live with it, trying not to feel guilty, and just taking deep breaths." 

Experts' tips for long-distance caregivers 

-- Understand your limitations. Your parents have the right to make their own decisions even if you don't agree.

-- Develop a care plan. An agency with expertise in this area or a paid geriatric care manager can help.

-- Keep informed about your parents' condition through daily contact and be alert to changes.

-- Develop a support system of neighbors, friends and professionals.

-- Arrange to call in to doctor visits on speakerphone if possible.

-- Organize paperwork such as financial statements, insurance records, wills, health care proxy and safe deposit box information. Keep copies for yourself.