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Caring for Mom and Dad from afar

  • Story Highlights
  • Caregiver group: 5-7 million Americans care for an older relative from afar
  • Expert: Pick one sibling to be in charge of Mom and Dad's care
  • Ask doctor if she/he is willing to communicate by e-mail
  • Don't expect your help to be instantly welcomed
  • Next Article in Health »
By Elizabeth Cohen
CNN
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Empowered Patient, a regular feature from CNN Medical News correspondent Elizabeth Cohen, helps put you in the driver's seat when it comes to health care.

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Dr. Patricia Harris, center, flies cross-country bimonthly to care for her parents, James, 91, and Flora Harris, 84.

ATLANTA, Georgia (CNN) -- It was shortly before midnight, and Dr. Patricia Harris was getting ready for bed. The phone rang. On the other end of the line was a woman about to break a promise.

The woman was her mother's neighbor. Flora Harris had made the neighbor swear she wouldn't tell her daughter she'd had a heart attack and was in the hospital, for fear her daughter would worry. The neighbor wisely decided to defy orders.

Harris desperately wanted to get to the hospital immediately, but she couldn't. She lives in Washington, D.C., and her mother lives in California. Harris had to wait seven agonizing hours until the first flight to Los Angeles, and then, she still had another seven hours of travel ahead of her.

"I was worried the whole time," she says.

For the past year and a half, Harris has commuted to Los Angeles every other month to take care of her mother, who's 84 and has heart disease, high blood pressure, and recently had back surgery and bypass surgery. Flora Harris takes care of her husband, James, who's 91 and has Alzheimer's disease. They live in their own home, and a caregiver comes in a few hours a day. Video Watch Harris deal with her heart-rending dilemma »

Harris is one of many Americans facing the heartache of how to take care of aging parents from afar. She's often worried and always guilt-ridden, not to mention intensely busy with a demanding job, two teenage daughters and the frequent trips to California.

"I fear there's going to be a huge disaster and nobody will be able to come right away," Harris says. "That's the huge fear -- that there will be something horrible and nobody will notice and it will be hours before I can get there."

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Between 5 million and 7 million Americans care for an older relative from afar -- at least one hour away, according to the Family Caregiver Alliance.

"The need is so great, and the out-of-town kids feel so helpless," says Dr. Eric De Jonge, director of geriatrics at Washington Hospital Center, where Harris works.

In some ways, Harris is lucky. She has the resources to make the trips to Los Angeles, and her mother is cognitively fully intact. Plus, Harris is a geriatrician -- a doctor who treats the elderly. She's treated countless patients whose children live far away, so if anyone should know the drill, she should.

"But it's still tough," she says. "I can anticipate what the next few years are going to look like, and it's not a pretty picture. My father's going to need diapers. There will come a time when he won't recognize me....and he's easily agitated. I worry he's going to be violent and hurt my mother."

Harris' mother so far has resisted her daughter's efforts to help, and actually swore her neighbors to secrecy when she had her heart attack.

So what do you do when you live a continent away from your aging, ailing parents? As the AARP aptly puts it, there are no magic answers. You can hire someone to help -- there's a cottage industry of companies that help far-flung family members (to learn more about selecting a caregiver from afar, click here) -- but you can't outsource it completely. Here from Harris, De Jonge, and AARP is some advice for making a heart-wrenching, exhausting situation easier.

1. Appoint a sibling, appoint a doctor

As an only child, Harris didn't have any choice. But other families should pick one sibling to be in charge of Mom and Dad's care, and in charge of communicating with doctors. "Don't have multiple siblings calling the doctor," De Jonge advises. The appointed sibling should also have the parents' health care power of attorney.

Similarly, appoint a doctor who's "captain of the ship," as De Jonge puts it. Elderly people tend to have lots of specialists, each prescribing medications that can interact -- and not in a good way -- with drugs another doctor has prescribed. "Often nobody's coordinating all their medications, and that's a huge problem," he says. The appointed doctor ideally would be a geriatrician, but could be one of your parent's specialists.

2. Fly in for a visit with the appointed doctor

If you're the appointed child, go with your parent to one or more appointments with the "captain of the ship" doctor. "Come in person at least once and establish a relationship," De Jonge says.

3. Find an e-mail-friendly doctor

Communicating with your parent's doctor via e-mail is "extremely valuable," De Jonge says. "It's efficient, it's quick, and you don't end up leaving voice mail messages for each other." If you're shopping for a new doctor, specifically ask how they feel about communicating via e-mail; not all doctors are keen on it.

A bonus: Find a doctor who's also willing to put your parent's medical records on the Internet. That way, you can see what happened at each doctor's visit. A number of Web sites offer services to upload medical records.

4. Get a network going

Harris has enlisted the aid of her parents' friends and neighbors (the ones who wisely broke the promise and called her when her mom had the heart attack).

"I don't feel I need to be there the minute disaster happens. But I have to know there's a system in place," Harris says. "You need a telephone tree -- someone who at any time of day or night will be the first-response person."

5. Don't expect your parents to welcome your assistance

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If you think your parents will welcome your help with open arms, think again. Harris says that in her experience, most elderly people will resist your help, wanting to remain totally independent.

Certainly don't think your parents will be willing to move to your city, even if you think that would make things easier on them (and you). "I asked my parents to move to Washington, and I got a resounding 'no,' " Harris says. "It's rare for parents to move out of their house, away from their neighborhood and friends. All the cajoling in the world doesn't help. Don't expect it."

This might be a good thing, Harris says.

"Be careful what you wish for," she says. "Change is hard, and when I have seen parents move, they have trouble making new friends, they get depressed, and their health deteriorates."

And here's a little logistical advice from AARP: have your parents' Social Security numbers, insurance policy numbers, and other financial information close at hand. Plus, click here to find local services (such as Meals on Wheels, senior centers) available in your parents' hometown. It wouldn't hurt to also have your parents' local phone book on hand, too.

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Perhaps the most important advice is to take care of yourself. "Give yourself credit for doing the best you can," advises AARP.

Even so, there will be many heart-wrenching moments, such as when it's time to go back home at the end of a visit. "I feel terrible when I leave. I look at them, and I look at the paid caregiver, and I think, 'I should be doing that,' " she says. "I feel guilty when I'm not with them. I feel guilty when I'm with them and I'm not with my family and I'm not working. There's a lot of guilt to go around." E-mail to a friend E-mail to a friend

Elizabeth Cohen is a correspondent with CNN Medical News. Senior producers Jennifer Pifer and Saundra Young contributed to this report.

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