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Hints and Information About Caring For Loved Ones Afar

By: Mary Beth Franklin
The Seattle Times, January 8, 2001

"My mother can still quote Dante, but she can't remember she just asked three times in a row what day it is," said Iona Givens, a corporate lawyer in New York. Her mother, retired college professor Azzurra Givens, is a widow who lives alone in Tallahassee, Fla.

Like more than 22 million Americans caring for elderly parents and other loved ones, Iona grapples daily with how to help her 87-year-old mother maintain her independence while providing the assistance she needs to compensate for her failing eyesight and fading memory. Her caregiving duties have an added, but far from unusual, twist: She has to manage her mother's care from 1,000 miles away.

Long-distance caregivers are a large and growing group. Approximately one-third of all caregivers orchestrate their duties from afar. Most of them are women, and many of them work full time, juggling careers and families of their own. They spend their days playing phone tag with social workers, scheduling transportation, paying bills - and holding their breath until the next crisis.

Despite the huge numbers, many caregivers never benefit from the experience of others, because they fulfill their duties in silence - often hiding their caregiving roles from employers and colleagues.

Such self-imposed solitude is as unnecessary as it is frustrating. While every care-giving situation is unique, you don't have to reinvent the wheel. There are plenty of resources and shortcuts to help you navigate the maze of public agencies, private services and volunteer organizations that can help you care for an elder far away. Use this compass to steer your journey.

Azzurra Givens' life revolved around Florida State University, where she taught French and Italian literature for more than 50 years. When she retired three years ago, she lost her focus, become depressed and ended up in a hospital and then a rehabilitation facility.

Her daughter Iona, who is 46 and an only child, worried about the next step. Thanks to Home Instead (888-484-5759), a national franchise that provides nonmedical caregivers by the hour, the next step was for Azzurra to return to her own apartment.

Initially, a caregiver visited every day to help with meal preparation, monitor her medications, drive her to the grocery and accompany her to doctor appointments. Once Azzurra was feeling better, the visits were cut back to three times a week.

"I feel really good that I have someone there who can help her - to make sure that she eats and listen to her," Iona said. "The rates are very reasonable ($10 to $12 per hour, depending on the task, higher in some parts of the country), and if you need more care, you can get it."

Iona is pleased she has found a way to keep her mother in the garden apartment she loves, close to the university and the local senior center where she teaches Italian.

She relies on the home-care agency to act as her eyes and ears. And she has a maid service clean the apartment twice a month, pays $15 a month for an emergency-response bracelet that her mother can use to summon help and phones every day - even if her mom doesn't always remember the calls.

The search for help

A discharge planner or social worker on a hospital staff may be the best adviser to assist in the search for a home-care worker or health-care aide to help when your loved one returns home, according to Kiplinger's Magazine. Otherwise, contact your local agency on aging for information about caregiving resources. (To find the number, call the national Eldercare Locator at 800-677-1116 for the number of the local agency on aging.)

If a parent needs skilled nursing at home after a hospital discharge, Medicare may pay the bills for a limited time. Most nonmedical home-care services are not covered by Medicare or regular health insurance but may be covered by long-term-care insurance.

Depending on local rules, your parent may be eligible for free or low-cost services such as homemaker aides, transportation and Meals on Wheels. When a parent's income is too high to qualify for free help, the local agency on aging may suggest how to find a home-care worker you can hire directly or refer you to private agencies or volunteer groups that provide such services.

In many parts of the country the Red Cross provides free rides to seniors for grocery shopping, and the National Senior Service Corps program provides free rides to medical appointments. If Meals on Wheels isn't an option, be creative: Establish standing carry-out orders with local restaurants, or order groceries online to be delivered.

Although going through a private agency may be more expensive than hiring someone directly, it lets you avoid all the tax headaches and paperwork that go along with being an employer. The firm should handle all of the administrative paperwork and the worker's training and find a replacement if the regular caregiver doesn't show.

When hiring a home-care worker on your own, check your parent's homeowner's-insurance policy for liability protection if the worker is injured on the job. And get a copy of IRS Publication 926, Household Employer's Tax Guide, by calling 800-829-3676 or visiting the IRS Web site.

Regardless of who cares for your relative, protect his or her private papers and valuables, and check phone bills for unauthorized calls, Kiplinger's recommended.

Be clear about the caregiver's duties, privileges and salary, and stay on top of the situation. Make sure you have a phone list of neighbors, friends and members of your parent's church or synagogue, and check with them from time to time about the care-giving situation.

A team approach

Shirley Poll of West New York, N.J., has been a long-distance caregiver for her mother and stepfather for five years. Every six weeks or so she flies to East Lansing, Mich., to visit them in a nursing home.

She created a five-member team of family, friends and health-care professionals to help her manage her parents' care. They advise her of her parents' health, handle finances and powers of attorney and are regular visitors. They write comments in a shared diary to keep each other up to date on new developments.

Her advice to other long-distance caregivers: Communicate regularly with the people responsible for your parents' hands-on care.

For long-distance caregivers, the telephone is a lifeline. It can also be a source of pain and frustration, reminding them that they are not with the elder and rendering them prisoners of voicemail hell, as they place calls on lunch hours and coffee breaks.

"I try really hard not to use my office time for personal use, but it's a dilemma," said Bonnie Atwood, a lobbyist in Richmond, Va., and sole caregiver for her 90-year-old mother, who lives 100 miles away. "The people you need to talk to are available only between 9 a.m. and 5 p.m. Monday through Friday. I stay late and work on weekends."

She drives to her mother's home at least once a month and uses vacation days to take her mother to doctors' appointments. Her mom relies on the regular Red Cross van service to take her to the grocery each week, and neighbors pitch in to shovel her walk when it snows.

Atwood, 53, said caregiving can be lonely and frustrating, something that friends and co-workers don't understand until they experience it themselves. She recently joined the National Family Caregivers Association (800-896-3650), which provides caregivers with support through a newsletter and volunteers available to listen to problems and offer solutions.

"All caregivers go through emotional ups and downs, including anxiety, sadness and frustration," said Suzanne Mintz, president and co-founder of the NFCA, based in Kensington, Md. "Long-distance caregivers have all that and the added sense of guilt because they are not there."

Managers for hire

Professional geriatric-care managers, who typically charge from $60 to $200 per hour, can be particularly helpful when you're trying to provide care across the miles.

They can assess your parents' condition, acquaint you with local services and residential facilities and recommend solutions in keeping with your parent's or your financial resources. You can get a list of managers at the National Association of Professional Geriatric Care Managers' Web site or by writing to the group at 1604 N. Country Club Rd., Tucson, AZ 85716.

One popular service, Care Quest (800-327-7138), which was previously available only as an employer-provided benefit, is now being offered directly to consumers. If you need immediate assistance, it costs $500 for unlimited consultations with a geriatric-care manager. If you expect to need help in the future, you can sign up for $99 a year, with consultations available after a six-month waiting period.