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Helping family members take care of their own

As a child, Luanne Santiago stopped at the house of her aunt, Elisa Rodriguez, every day after school and stayed with her on weekends.

Now, with Santiago, 41, and Rodriguez, 77, those visits continue.

But there's a difference -- now she's watching out for her aunt, who has diabetes, high blood pressure and heart problems. Santiago takes her to at least four different doctors and translates for her. She helps her buy beans and rice so she can cook the Spanish dishes that give her joy. She sorts out her medication.

As many do, Santiago willingly took on the task of helping a woman she considers her second mother, and it's made easier with a network of relatives pitching in.

Though Santiago remains the loving niece, she's also taken on a foreign role, that of a caregiver -- a world nearly everyone will eventually inhabit, either as a recipient or a provider.

Santiago wants to provide the best care she can, but it takes lots of planning. The current hassle is the new prescription drug plan.

"Every month her insurance company has to go for the cheapest medication," she said, "and then the pill is a different color or a different size and it throws her right off."

Santiago is among approximately 44 million Americans providing care to elderly spouses or relatives, a number that will, predictably, escalate as baby boomers enter their elder years.

For the first time, the American Red Cross -- the agency that preaches emergency preparedness for storms, fires, natural disasters -- is giving attention to individual caregiving, joining many agencies that have done so for years.

"In a caregiving situation, you can quickly be thrust into emergency and disaster," said Judith Rucki, Buffalo Chapter American Red Cross director of communications.

In response to what's likely to be occurring in home after home, the Red Cross national headquarters created the Family Caregivers Initiative to prepare Americans for what they are likely to encounter in the coming years.

For its part, the Buffalo chapter, in collaboration with WNED, has produced "Life Journeys: Solutions for Caregivers," which will air at 9 p.m. Thursday. It will be repeated at 9 p.m. Monday on ThinkBright TV. With funding provided by the John R. Oishei Foundation, two subsequent segments are planned, showing "A Day in the Life" and "Caring for Caregivers."

>Reaching out

As a starting point, experts suggest getting legal papers in order, including health care proxy for medical treatments, durable general power of attorney and HIPAA forms, as well as taking classes (the Red Cross will be offering them on an ongoing basis) on all aspects of caregiving.

Susan Hunt, the show's host, may be best known locally for appearances on "PM Magazine," but she's traveled the world covering play-by-play for U.S. Open tennis, rating luxury hotels and inns, co-hosting HGTV's "Designing for the Sexes" and appearing on her radio show "GolfChix."

Several years ago, she added "elder care" to her list of interests, as she helped her late mother, Alda 'Sis' Hunt, move into an adult living community.

"As a 'long-distance caregiver,' I struggled with home care, hospitals, prescription drugs, rehabilitation centers and nursing homes," she writes on a Web site. "In many ways, this 'system' triggered in me an acute awareness of how precious life is, especially those last years of one's life."

Besides interviewing experts, Hunt talks to local families that include Santiago and Bonnie Copeland in a folksy approach to what they are experiencing.

"We'd love to reach people so that they are prepared beforehand," said Stephanie Malinenko, Red Cross project director. "One of the great things is to see people in a class nod in agreement when others talk about what they are going through."

>Filling a need

Classes will be offered at the Delaware Headquarters in the just-opened William J. McFarland Community Training Center, focusing on legal and financial issues, as well as discussing safety, personal care and holding family meetings. Among presenters is Dr. Laura Anhalt, education specialist, who has been a first aid, CPR and AED instructor for the Red Cross since 2000.

One class will teach people how to position and turn people and transfer them from bed to wheelchair and toilet, using a slide board and a Hoyer lift.

"It'll be hands-on practice," said Malinenko. "We'll get participants into bed and wheelchairs. We want people to know what it feels like to be moved."

Miriam Callahan of the Erie County Senior Service Caregiving Center called this training particularly valuable. "Often a person will be discharged from a hospital into someone's home and that person doesn't know how to transfer them or give them a bath," said Callahan. "So that's really filling a need."

In Copeland's situation, it takes a village to care for her 89-year-old mother, who requires round-the-clock attention. "When she came to live with me, I made keys for everyone," she said. "I didn't want any excuses."

Seeing how frail her mother has become and knowing that she can't be left alone are difficult realities for Copeland, who is an assistant manager at St. John Tower, a residence facility for seniors.

"She's not nursing home material," said Copeland of her "take-charge mother," who once had a baking business in Lorain, Ohio, that attracted people from miles away to pick up strawberry whipped cream cakes, sweet potato pies and double-decker brownies.

While each story is unique, Lynne Bader-Gregory, senior producer, said she learned that caregivers are often very stressed, depressed and guilt-ridden, needing a break, but not knowing how to find time away.

"You have to carve time out for yourself, write it down and commit yourself to it," she said. "If you don't do that, you lose your own sense of identity."

The other thing she found was that she never had to look very far to find someone who was taking time off from work to be with a parent, looking in on a neighbor or nursing a spouse.

While caregiving starts with small chores and infrequent visits, she said, responsibilities inevitably increase.

"If you are a caregiver now," she said, "it'll only grow over time."



>Television Preview

"Life Journeys: Solutions for Caregivers"

9 p.m. Thursday on WNED and 9 p.m. Monday on ThinkBright TV

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