Elder care from afar
“I had the feeling that all wasn’t well with my father,” Claire Milne recalled.
It was Christmastime in 2003, and Milne had flown from her London home to visit her 82-year-old father in Maryland. Milne noticed that her dad struggled to stay upright as he walked -- early signs of a mysterious neurological condition.
Over the next four years, Milne, 56, would travel across the Atlantic every few months to watch over him, standing by during hospital stays, offering support as well to her ailing stepmother.
She helped arrange electronic payment of their bills. She helped them think through the pros and cons of moving into an apartment. She made sure her siblings were up to date on the latest health news.
“I don’t think of it as a duty,” Milne, a telecommunications consultant, explained shortly before her father died last month. “I think of it as what I want to do.”
Like Milne, millions of adult children now find themselves faced with the challenge of caring from a distance, a problem that has a peculiarly modern side. Medical advances keep the elderly alive longer than ever, and the globalized economy enables their adult children to pursue careers hundreds or thousands of miles from home.
Americans over 85 are the fastest-growing segment of the population, according to the National Institute on Aging. This group -- which will include increasing numbers of parents of the baby boom -- is expected to swell to 21 million by mid-century from 4.2 million in 2000.
Yet distant children are often in no position to help. In a further modern twist, an industry of local care coordinators is emerging to bridge the gap between far-off relatives and aging parents who may be overwhelmed by the labyrinth of medical and other services designed to help the aged and infirm survive in their own homes.
Even now, “we don’t have enough geriatric case managers to go around,” said Cheri Lattimer, executive director of the Case Management Society of America, a group composed largely of healthcare professionals.
As many as 200,000 workers, including nurses, social workers and family therapists, may be devoting at least some of their efforts to helping old people and their younger relatives confront a maze of support services, she said.
A new website is devoted to issues of caring from a distance: www.cfad.org.
“There will only be an increasing need as the boomers come into the senior population,” Lattimer said.
Care managers often employ nurses, social workers and counselors. They typically assess a troubled situation, then make referrals or help arrange needed services, including personal care or professional guidance.
Such coordinators may continue to monitor a household, serving as “eyes and ears” for far-flung family members.
“We had four calls from children this week,” said Bunni Dybnis, director of professional services at LivHome Inc., a Los Angeles-based company that coordinates care for struggling seniors.
Dybnis and others note that it is often during a holiday visit or other infrequent trips home that an adult child notices an unsettling change.
Packets of prescriptions lie unopened on the counter. A once-immaculate house is unkempt. A cool-headed individual is suddenly given to erratic swings in mood. Sometimes such details might flag a decline, perhaps the result of Alzheimer’s disease or other chronic woes.
“What’s it like in the refrigerator?” asked Elinor Ginzler, a specialist in long-term care at AARP. “Is there food in that refrigerator, and is it fresh? . . . It’s that kind of recognition while you’re visiting that all may not be as well as it was in the past.”
For relatives, that may be when life becomes more complicated. About 7 million family members in the U.S. regularly travel at least an hour to assist ailing relatives with transportation, errands, help around the house and other tasks, according to AARP.
For Milne, long-distance caring required a flurry of eight-hour trips across the Atlantic. The catalyst was seeing her father go outside to pick up a newspaper. “Whereas previously he would have just walked out and picked it up, he was extremely cautious and was worried about falling,” Milne recalled.
Ultimately, Milne, two half-brothers and a stepsister played roles in keeping the older couple independent, though she took the lead when it came to supporting her father.
“Though I live so far away, I have a kind of natural leadership role in all this for being the big sister.”
In other situations, scattered family members may rely on the emerging local care coordinator industry to help with arrangements they can’t handle from far away.
“I thought about moving back to Los Angeles, but it’s very difficult when you’ve made your career somewhere else,” said Evelyn Kahan, 61, a teacher who lives near Monterey. Kahan’s 86-year-old mother started having memory problems four years ago.
Instead, Kahan hired a local care manager to help her mother remain in the home she had occupied for half a century. The manager found a driver to take the older woman on errands as well as in-home aides to provide basic assistance in such areas as bathing and “to make sure she has a couple of decent meals a day.”
Kahan described the help as an enormous “stress reliever” for her and her sister. “Whatever we need, we just call . . . and we know it will be fine,” she said.
Care managers say they can help even highly educated consumers contend with a plethora of care choices or put together the recipe of support that will enable the struggling older person to live in safety and independence.
“Even physicians come to us for resources for their own parents,” said Mary Winners, who founded About Senior Solutions this year in Monrovia. Winners, whose background is in healthcare business development, employs licensed clinical social workers and psychotherapists to evaluate clients’ needs.
Among others, she helped a daughter in Arcadia who was trying to figure out the best way to relocate her 98-year-old father from a nursing home in North Carolina to an affordable facility near her. “I try to look at what puzzle pieces are missing for the care they may need and direct them accordingly,” she said.
Dybnis of LivHome has helped out-of-towners contending with a parent’s mental breakdown, siblings fighting over who should provide help and seniors mistreated by in-home aides.
In one recent case, a man in his 90s broke his hip, which meant that he could no longer provide care for his wife, who had lost her vision. In another, a parking attendant informed a visiting son that the usual caregiver seemed to treat his mother rudely and abusively.
In yet another, Dybnis said, a woman with chronic mental problems cut electric wires in her apartment.
“You like to believe your parents are the same as they always were,” said Dybnis, a licensed marriage and family therapist whose firm has 19 sites in four states. “Everybody is in denial until something happens.”
Care coordinators vary in quality and qualifications, some experts caution. Costs may exceed the reach of some households and regulation is lax.
Nonetheless, an attorney who works on elder abuse issues said the emergence of care management as a specialty was a promising development and that such coordinators could help steer families toward safe assistance and away from shady operators who offer cheap in-home care.
“There aren’t enough of them,” said Mitchell A. Karasov, an attorney in Valley Village. The problem, he added, “is that a lot of frail people find someone to help them at bargain-basement prices with no credentials. These are the kinds of people who might take advantage of them.”
Within the care industry, meanwhile, a small but growing subgroup of experts is trying to raise standards. Currently, there are 2,000 members of the National Assn. of Professional Geriatric Care Managers, which numbered just 50 in the 1980s.
Membership requirements vary, depending on a person’s background, but involve a minimum of two years of supervised experience in senior care and may require a college degree in counseling, nursing, mental health or social work.
Cost may be an issue for some families. Private coordinators may charge $75 to $250 an hour, depending on where a client lives. In addition, some may charge more for an initial home visit.
“It can be a godsend, but the biggest pitfall is being able to afford the rate,” said Nora Jean Levin, executive director of Caring From a Distance, a nonprofit Web-based clearinghouse for information and sources of help for caregivers.
However a household contends with problems that may emerge when a parent grows old, concerns about long-distance care giving may become familiar to a growing portion of American families, including 78 million baby boomers.
“If you’re not dealing with this now,” Ginzler said, “you will be.”
(BEGIN TEXT OF INFOBOX)
Tips for choosing a care coordinator
Here are questions to ask before hiring a care manager for an ailing older relative:
What are your credentials, and are you licensed in your profession?
How long have you been providing care management services?
Are you available for emergencies?
Does your company also provide in-home care?
How do you communicate information to relatives?
What are your fees (in writing)?
Can you provide references?
Where to find help
Eldercare Locator, overseen by the U.S. Administration on Aging and state officials, can point consumers toward agencies around the country that are concerned with aging:
Phone: (800) 677-1116.
National Alliance for Caregiving, a nonprofit coalition of national organizations, focuses on issues of family care giving: www.caregiving.org.
Family Caregiver Alliance, a Bay Area-based nonprofit, offers a range of information, including an online handbook for long-distance caregivers: www.caregiver.org
Caring From a Distance is tailored to the long-distance caregiver. Much of the information on local services is for Washington, though the site is expanding: www.cfad.org.
Help that might be needed
Chores, laundry, yardwork, household maintenance
Personal care, such as dressing and bathing
Transportation to and from doctors and other important appointments
Help in paying bills and other financial matters
Making sure medications are handled properly and taken on time
Visiting and providing emotional support
Sources: National Assn. of Professional Geriatric Care Managers; Times research; “Handbook for Long-Distance Caregivers” from the Family Caregiver Alliance