BOSTON – The holidays are over. Adult children and grandchildren have returned from visiting aging parents and grandparents over the winter break. And now the hard part begins.
Millions of adult children now have to deal with or continue dealing with the cottage industry known as long-distance caregiving. At present, there some 34 million Americans providing care to older family members, 15% to 25% of whom are considered long-distance caregivers, according to a 2004 MetLife study of the subject.
And for many caregivers, providing such long-distance care is at best difficult, overwhelming, expensive and anxiety-ridden, said Sandra Timmermann, director of MetLife's Mature Market Institute.
"Long-distance caregiving is even worse than short-distance caregiving," said Linda Thomson, author of "A Caregiver's Journey — You Are not Alone." "The family burden is worse than if you live close by."
Others agree. "It's a juggling act of monumental proportions," said Elinor Ginzler, co-author of Caring For Your Parents: The Complete AARP Guide."
So what can be done to ease the burdens? Timmermann, Thomson and Ginzler offer the following tips:
1. Assess the need
"You don't have the opportunity of day-to-day physical contact with a family member so it's important to establish a formal and informal or both types of support networks," said Ginzler.
Those who want a formal network should consider hiring for a fee a professional geriatric-care manager who at a minimum can assess a family member's needs and who, if need be, can provide ongoing case management, pay bills, read correspondence and the like. Ginzler says such managers are often familiar with the services that are available to aging parents, such as Helping Hands or Neighbors Who Care.
"I liken them to wedding planners," says Timmermann.
Finding a professional geriatric-care manager is easy enough. The National Association of Professional Geriatric Care Managers has a Web site that provides links to association members, many of whom are former nurses or social workers.
A professional geriatric-care manager might charge $100 to $500 for an assessment and $60 to $90 an hour for on-going care. Thompson also suggests working only with geriatric managers who are licensed or certified by the states in which they work and that you conduct a full background check of those you may hire.
Those averse to hiring a geriatric-care manager should consider visiting the Eldercare Locator's Web site, which can help caregivers find resources for older adults.
A word to the wise, however. Thomson says local Area Agencies on Aging, which are federally funded, will provide a list of services available but not make referrals. And that means adult children have the burden to research and select the services required. And that's no easy task, say experts.
Ginzler also suggests establishing an informal support network of neighbors and family members who live near an aging parent.
"You should use all the different people who come in contact with a family member to get a sense of how things are going," Ginzler said. In particular, you want to get a sense if what you hear on the telephone when talking to a family member matches the information that you might be getting from the informal network, she says.
2. Keep important documents in order
Timmermann says caregivers and their older family members should complete and distribute a "caregiver emergency information" sheet. They should write down the contact numbers for their family member's doctors, lawyers, neighbors and the like and distribute it far and widely, posting it on refrigerators, leaving copies in wallets, and elsewhere.
MetLife has a booklet available for download that outlines much of the contact information required for long-distance caregivers. And AARP's Web site has useful resources as well.
Timmermann also says caregivers might consider using a personal medical alert emergency response system, such as those offered by Lifeline Systems. And though it may be hard to talk about such things, Thomson says adult children also need to make sure all legal and financial paperwork, such as wills, living wills, durable powers of attorney and health-care proxies, are in order.
"You need to do this before a crisis happens because you can't make rational decisions in times of crisis," says Thomson. Experts also say adult children should ask their parents to complete privacy release forms and keep them on file with the parent's doctor's office. That way, the parent's doctor can discuss an older family member's health.
3. Visit as often as you can
Long-distance caregivers should visit their older family members every few months to check for signs of trouble, says Timmermann. Caregivers should look for changes in personal hygiene, the condition of the house such as old food in the refrigerator and signs of chores not being done such as bills piling up.
"Change in cognitive impairment may not be apparent on a phone call," Timmermann said.
Of course, long-distance caregiving can be expensive. MetLife says caregivers spend an average of $193 per month on out-of-pocket purchases and services for the care recipient and another $199 per month in travel and phone expenses.
Experts say splitting caregiving duty visits with siblings and loved ones can reduce some of the financial stress of long-distance caregiving. Ginzler also says caregivers should visit, not just work, when visiting family members.
"It's easy to get caught up with all the work that needs to be done," said Ginzler. "But you have to remember that you are visiting your parents so build in some intentional time, some pleasant time to just visit a family member."
Ginzler also says long-distance caregivers need to be patient and realistic. "You are juggling your life with your long-distance caregiving life."
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