The Challenge of Long Distance Care-Givers

by Bob O'Toole, MSW, President, Informed Eldercare Decisions, Inc.

In a society that has become increasingly mobile in recent years, it is not uncommon to find different generations of an extended family, living hundreds, or even thousands, of miles apart.

Whether by personal choice or economic or professional necessity, the 50 year old "adult child" of an eighty year old frail parent, is increasingly likely to live too far away to provide the care, support and supervision their parent now needs.

In fact, according to a recent article in the Boston Globe, if you're among America's 76 million baby boomers, and you thought finding childcare was a colossal hassle, you are about to get smacked between the eyes with an even bigger problem. Globe writer Judy Foreman describes this new phenomenon as "... the tip of a huge iceberg that, some worry, could come close to sinking the Great Ship Baby Boomer."

"Call it the geographic crunch, suitcase care giving or long distance care management. By whatever name, managing the care of a frail or disabled parent, especially from far away, is ... a true nightmare, and one that will almost certainly get worse as boomers and their parents age."

Patricia Brans, an editor of American Demographics, cites the story of one woman who chose the alternative of quitting her job and moving her mother into her home, to provide the care she needed while her four children were still living at home. The woman told Brans that ... "the experience was satisfying, but the financial drain was something else. It's a money saver if you are not dependent on a salary, but once I quit that money was gone."

The elderly parent may choose to move to an Assisted Living facility or to a nursing home to receive the care they need when they can no longer manage on their own. But as Foreman points out in her Globe article, 'most want to live out their lives in their own homes. With the right kind of help - nursing services, home health aides and someone to help with errands, housekeeping and yard work, they can do so. The trouble with that, however, is that while services are available, especially for those who can pay for them, finding them usually means cutting through miles of red tape."

Scott Bass, Dean of the graduate school at the University of Maryland at Baltimore County, told Foreman ". . . it's tough enough to do if your parents live next door, and it can be truly overwhelming if they don't." Merril Silverstein, of the University of Southern California, reports that an estimated 7 to 9 million aging parents do not. That gap will continue to widen as both baby boomers and their parents grow older.

When the long distance caregiver tries to contact local social service or health care agencies for help they discover that, while the population of frail older persons is growing steadily, the care and services available for them is shrinking rapidly. According to Albert Norman, Executive Director of the Massachusetts Home Care Association, "Over the past ten years, publicly funded home care programs in Massachusetts have fallen from 45,000 elders in 1988, to less than 31,000 in 1996. Those who do receive home care," says Norman, receive an average of only $6.21 per day for services."

Once they recover from the shock that Medicare and other health care insurance for retirees, covers very little of the care and support needed by their parents, long distance caregivers, as well as those with demanding jobs who live closer to home, are discovering the private professional care manager. These professionals, usually experienced social workers, nurses and others with geronotoly credentials, can serve as "surrogate family members."

Private care managers can perform an assessment to get an accurate picture of how well or how disabled an older person is. They prepare a set of recommendations to help both the elder and family members make the difficult decisions. If a home care plan is needed, the care manager who is familiar with local resources, can help locate a reliable home health service, and can provide ongoing monitoring of the home care plan to insure quality and to make adjustments to the plan whenever necessary.

Professional care managers work on a fee basis, much like accountants or attorneys. Fees range from as low as $50-$75 per hour in some parts of the country to $100-$150 in large urban and suburban areas.

While this may appear costly, the care manager can often save a family far more than their fees. Employing a professional care manager can reduce the amount of time lost from work by the working caregiver, reduce or eliminate the family caregiver's cost of traveling back and forth, prepare a care plan that is far more cost effective than a family member, unfamiliar with the complex and costly long term care system, could put together on their own.

While hands-on care - bathing, shopping, giving medications - is the most demanding help that children can provide to aging parents, the managerial role - the hours on the phone arranging and monitoring help given by others, handling day to day financial matters and safety concerns - is no small task.

In fact, lining up care for aging parents is "much more complicated than setting up child care for kids," according to Dorothy Howe, acting manager of Health Advocacy Services for the American Association of Retired Persons in Washington.

Professor Bass told the Globe's Foreman "You can call state agencies and you get a recording, or someone's not helpful. Or it's the wrong number... This is probably the hardest thing a family can go through. It defies the complexity of what people experience with children."

For one thing, "you're not dealing with a dependent," says professor Bass. "You don't have the authority, necessarily, to intervene." Added to that is an often complex family history, sibling disputes over who should help, how - and the distance.

Reflecting the growing demand and popularity of these professionals, the National Association of Professional Geriatric Care Managers, based in Tucson, AZ, a twelve year old professional organization that sets standards in this field of practice, reported a 50% increase in membership in 1995-96 according to the Wall Street Journal.

Currently, 2 million working Americans - most often of them women - help older relatives with activities of daily life. But the "greater geographic dispersion of families, smaller family sizes, and the large percentage of women who work outside the home, are straining the capacity of this care source," according to a report from the government's General Accounting Office.

Al Norman, of Mass Home Care, a trade organization of elder service providers, told the Globe "I couldn't agree more. I found this out personally - and I am in the business."

When his mother needed help for his father, who had Parkinson's disease, Norman had "a devil of a time trying to just locate an Area Agency on Aging in Maryland ... We never did find the right service for overnight care."

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Informed Eldercare Decisions, Inc., provides the following services:

• Health, social & functional assessments to determine the services best suited for each individual.
• Care Planning and care management: arranging & monitoring home & community care, assisted living, nursing care facilities & other services.
• Support for family caregivers who live far from their parents or siblings.
• Advisory services to guardians and conservators.
• Counseling and assistance with methods of financing the high cost of long term care including: Long Term Care Insurance, Reverse Mortgages, Life Settlements and other long-term care financing strategies.

Informed Eldercare Decisions, Inc. is a private company dedicated to helping people make the best choices for long term elder care of their relatives. We are Experts in Long Term Care insurance and Elder Care planning.

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