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It began in the fall of 1990, when Andrea Cohen's mother began seeing a physician for increasing joint pain and falling. It looked like arthritis, but turned out to be more serious.
The diagnosis was amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig's disease, a progressive, fatal degeneration of nerve and muscle tissue. Cohen had to leave her home in Brookline, Mass., to fetch her mother in West Orange, NJ, to seek a second opinion at Columbia Presbyterian Hospital in New York.
"It was nerve-wracking, to say the least," she says.
That night, after Cohen completed the 300-mile drive to her parents' home, her father began complaining of chest pain. She reassured him that it was probably just stress.
But not long after she had gone to bed, her mother began screaming in panic. She took her father to the emergency room in the throes of a heart attack. Within ten days, he was in a coma; in two weeks, he had died.
"Everything was unraveling," Cohen says. "I hired help and tried to monitor it from home, but there were people who didn't work out. It was just awful and it got to the point where I said I couldn't do this anymore. I had to take a leave of absence and stay with her for a while."
Ironically, the job Cohen had to put on hold in order to care for her mother was at an elder care services company called Houseworks that helps people find care, assistance, housing and other services for their older friends and relatives.
Now, when she needed help from a three-state distance, she was stymied, frustrated, even feeling a bit baffled and defensive.
But not alone. Millions of Americans are caring for their parents from afar, many trying desperately, as Cohen was, to keep their parents at home while providing a good quality of life. And almost no one feels completely confident about the results they achieve.
"I can imagine what it feels like for people who don't know what they're doing" says Cohen. "A lot of the work I do now is reflective of the lack of power I felt when I had to provide the care my mother needed."
First, seek help
Daunting as it sounds, there are things you can do to make this process easier so that you can enjoy the time you spend with your older parents rather than running around putting out the latest fires.
For starters, you may want to seek out a geriatric care manager (GCM), a specialist in evaluating, selecting and monitoring services for older people, whether they're provided at home, in a nursing home, or an assisted living facility.
But, says Emily Saltz, an experienced GCM at Elder Resources in Boston, there are many things people can do to ease the troubles of caring for an older parent in a distant city.
When you visit, don't panic
Children who visit once year for Thanksgiving or the winter holidays walk into the home and freak out when they find a pile of dirty dishes in the sink, or a parent with an undressed cut.
Saltz recalls an older couple who were having difficulty taking care of their home and themselves. When their two sons came from California and Israel to visit, they wanted to make immediate changes but their parents resisted.
"Sometimes you have to go slowly," says Saltz. "We helped the parents understand that by making decisions on their own behalf earlier, they would avoid having decisions made for them later on. We wanted to keep them in the driver's seat."
If you think it's appropriate and have some time, leave some assisted living and nursing home brochures with your parents; then wait for them to bring up the subject with you.
Encourage your parents to spend their resources on themselves. "People of our parents' generation tend to think that they should sacrifice rather than use their money to take care of themselves," Saltz says. "Good kids are willing to say, 'We don't want your money.'"
Coordinate with siblings
Another thing you can do is to coordinate with siblings "on the ground." Brothers and sisters who live closer to your parents may feel left out of decision-making or conversely, that too much of the burden is falling on them. Talk to them frequently, and avoid making summary decisions without consulting anyone else.
You can also use brothers and sisters to "reality-test," according to Susan Spector, a Jamaica Plain, Mass., geriatric services specialist whose mother lives in Milwaukee.
"After I talked with my mother, I would call my sister in Madrid and tell her everything we talked about and how Mom sounded to me," she says. Her sister would call their mother soon thereafter to see whether Spector's concerns about her mother's memory problems were real, and whether it seemed that their mother could manage by herself at home.
When you visit, stay close to home. If you still have friends in the area, ask them to come to you at your parents' home. Don't expect to get a lot done during your stay.
Get technical
Use the Internet to locate and screen services. A wide variety websites and tools, like careguide.com allow you to take a cursory look at services for older people and their costs.
Carol Greenfield, founder, president and "chief web maven" of Senior Web Solutions in Boston, recommends getting started at medicare.gov to get acquainted with reimbursement rules. Advocacy groups like the Alliance on Aging, the American Association of Retired Persons and many others offer on-line information and support for caregivers.
Consider hooking up your parent to the Internet, perhaps providing email or even a web cam so you can see one another on a daily basis. Greenfield recommends WebTV as an easy way to provide older people with Internet access.
Perhaps the most important thing to remember when caring for parents who are far away is that, even if you have a GCM checking in on your parents periodically, you should visit and call as often as you can to keep yourself informed about your parents' status.
"We live in a hostile world of health care, particularly for older people," points out Emily Saltz. Frail, frail, older, demented people are particularly vulnerable, and no one can represent their interests as fully or honestly as a concerned, responsive child. Freelance science and medical writer JOHN F. LAUERMAN, is co-author of "Living to 100: Lessons in Living to Your Maximum Potential at Any Age," Basic Books, 1999. He lives in Brookline, Mass., with his wife and two children.
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Reactions to "Bridging the Distance"

Nicely written and conveyed thoughts. As a gerontology major, I see these situations time and again. Families ilequipped to deal with the degredation of an aging parents health. There's one thought I would add and one additional resource not listed. The thought I would add is dignity. Talk it scenarios thru with your parents about what they perceive to be their individual dignity prior to their declining years. This will make the road there easier for both of you. The additional resource would be a nearby church. Many churches -- are introducing a concept called parish nurses -- these are liasons to your community health care services available for your aging parents , often times they are nurses who can provide you with an accurate assessment and/or check on your parent regularly until the time comes when they truly "need" to make a decision.
Joyce Oravecz

Been there, done that. My FIL has Parkinson's Disease. He lives in NJ (the shore) and we live in TX. In any emergency situation, we are looking at 6-8 hours minimum to get to him personally. When we began looking for help for him so that he could continue to live independently in his home, we took time off from our jobs to travel to his city to hire help. Since we did not have any contacts we resorted to yellow page ads for hiring help. We got our wakeup call when one homecare giver (he was in pretty bad shape when he first moved) told my husband, "What kind of son are you, anyway? Are you REALLY going to leave him here alone?!" Talk about a punch in the gut! We were lucky enough to find a woman who is our eyes and ears on the ground in his city. She goes to appointments with him, she hires and fires any domestic/medical help as she deems necessary. And stays in constant communication with us. She is truly a blessing.
So don't give up, good, qualified help is there, it's just not as easy to find as you would think. It's alot like finding a good daycare for your child actually.
Have a great day!
Felicia Krumbeck
Communications Director, VNSM
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