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Long-distance caregivers can tap tons of help

Beth Witrogen McLeod was 43 and living in California when she received the phone call that changed her life: Not one, but both, of her parents back home in Kansas were terminally ill.

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Ready or not, McLeod became a long-distance caregiver.

McLeod's learn-the-hard-way experience is one shared by many long-distance caregivers who find themselves overwhelmed with the emotional, physical and mental demands of their responsibilities.

"Financial, housing, social, medical: I had to deal with all of it from a distance, and I didn't know anything about anything," she says. "I didn't know anyone who was going through it; I didn't know there were services available; I didn't know there were support networks, though I discovered them and later built them."

With a home and family of her own, McLeod did what any good daughter would: She took the weight of her parents on her shoulders long-distance and nearly collapsed from the load.

"The worst mistake I made was to not take care of myself. That created severe health problems, emotional problems, psychological problems that, by the time I was finished, I went down the tubes for years, it took me years to recover. It's like they say on airplanes: You must put your own oxygen mask on first."

Today, McLeod is a journalist, counselor and speaker on spirituality and aging. Though she finds herself serving as caregiver to her ailing spouse, she's better able to deal with it now.

"I'm a totally different person. There are much healthier ways to do this, and it starts with really being honest with ourselves about what the real issues and needs are."

Her 1999 account, "Caregiving: The Spiritual Journey of Love, Loss and Renewal," was nominated for the Pulitzer Prize.

"We are socialized not to ask for help; we're supposed to be independent Americans, and be strong and buck up," she says. "That's all well and good, but it doesn't really get the job done; it doesn't allow you to care for yourself and it really doesn't allow for the best possible care. Asking for help is not a sign of weakness; it's a sign of love."

Rough road ahead
On life's highway, this sign would mark the approach of a caregiving situation: Rough road ahead. The 1999 MetLife "Juggling Act Study" found that while more than half of the caregivers surveyed said they expected to spend just two years caring for a family member over 50, the average length of time actually is eight years.

The experience of being a caregiver, long-distance or otherwise, is both common and quite often hidden. More than 44.4 million Americans, representing nearly one-quarter of U.S. households, provide unpaid care to another adult, according to "Caregiving in the U.S.," a 2004 update to the 1997 National Caregiver Survey conducted by the National Alliance for Caregiving and AARP. Of these, six in 10 work or have worked and have had to either adjust their work schedules or quit their job entirely to accommodate the care of their loved one. Eighty percent of all care received by older Americans is provided by a family member.

The value of the services family caregivers provide for free is estimated at $257 billion annually, according to the 2000 report, "Economic Value of Informal Caregiving" by Peter S. Arno. That's twice as much as the money spent annually on home-care and nursing-home services.

Experts agree that there are likely far more people in a caregiver role than the surveys indicate.

"We don't call ourselves caregivers; we're just doing what we're supposed to do, taking care of mom and dad," says Helen Eltzeroth, manager of the Eldercare Locator for the National Association of Area Agencies on Aging, or N4A, as it's called. "We don't identify as caregivers."

Long-distance care-giving offers its own particular challenges. The longer the caregiver has been away from their parent or loved one, the more daunting it may seem to piece together the puzzle that will improve life at both ends of the telephone. What makes it even more difficult is that many long-distance care-giving scenarios are triggered by a health crisis, such as a heart attack, stroke or injury, that places time at a premium. You may have to act fast, and probably won't have a clue where to begin.

Eltzeroth manages the best starting place: the Eldercare Locator. Located on the Web at or toll-free at 800-677-1116, Eldercare Locator is a national referral service funded by the U.S. Administration on Aging to help the elderly and their families quickly zero in on the best community-based services available anywhere in the country.

-- Posted: June 22, 2005




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