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Caring for the caregiver: UM program reaches out to minorities

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CAREGIVERS' PROJECT: LOCAL FAMILIES NEEDED

The video equipment in the Alzheimer's program is available in English, Spanish and Creole.

All told, 71 caregivers are taking part in the video segment. In addition to the video project, participants maintain journals.

The program is still searching for Haitian-American families to participate, said Dr. Sara Czaja, co-director of UM's Center on Aging.

For more information about the project, which will be complete in two years, call 305-355-9200.

eberas@MiamiHerald.com

In the United States, someone develops Alzheimer's disease every 72 seconds.

Someone, too, must rearrange their life to become a caregiver. A daughter must be there to remind her mother who her grandchilden are. A husband to brush his wife's teeth. A grown child to keep a parent from turning on the stove.

''It is the most terrible thing in the world to have someone go through,'' said Iraida Garcia, 55, of Kendall, who takes care of her 79-year-old mother Irma. ``The body is there but the mind and the memory are not. You sit and you look at them and talk to them. And there is no connection. And as selfish as it may sound . . . it's really hard on me.''

While the consquence of caregiving has been a trendy subject among sociologists, very few have studied the impact on Hispanic, African-American and Haitian-American caregivers in South Florida.

Until now.

The University of Miami's Center on Aging is rolling out a two-year project that will evaluate the toll of taking care of a loved one on nearly 200 caregivers of color in South Florida. Nationwide, 9.8 million people provided unpaid care for someone with the disease in 2007, according to the Alzheimer's Association.

''People don't plan on becoming caregivers,'' said Dr. Sara Czaja, co-director of the center and principal investigator on the project. ``It's something that just happens to them. It's not one size fits all. Culturally, we have different ideas about family, about caregiving -- maybe technology can play a big role.''

MAKING A CONNECTION

Part of the program involves connecting caregivers to others through video phones installed in their home. Through their video monitors, they can reach out to other caregivers, social workers or medical experts and watch pre-recorded videos about caregiving and Alzheimer's.

''I've never been able to get out to a support group,'' said Celestine McCrea, 63. McCrea spent much of the last 10 years taking care of her mother, Leona Cooper, who passed away in July at 87. ``I never left my mother alone.''

In her years of caretaking, McCrea had read a lot of literature on the disease but didn't know many other caretakers until she started attending the tele-support groups from her home.

''I've never met them,'' McCrea said. ``But I do feel like I know them. I knew other people went through this, but I had no idea how much so.''

McCrea, an only child, moved her mother from South Carolina to her Miami Gardens home after she had her first heart attack in 1998. Five years later, ``she started acting a little differently.''

It was Alzheimer's, the mind-destroying illness that robs people of their memory, their personality, their perceptions of reality. While there is no cure, a new experimental drug is showing promise in halting the progression of the disease, according to research presented last month at an Alzheimer's medical conference.

For McCrea, the next five years were consumed by doctors' appointments, pharmacy runs and worry over her mother's erratic behavior.

''She went through quite a few stages,'' McCrea said. ``She was very violent, she would throw things at me. She would try to leave the home. She would just start walking. Then I'd find her and she'd say I wasn't her daughter.''

Her mother broke her shoulder, had several more heart attacks and eventually stopped walking.

''Caregiving is socially isolating,'' Czaja said.

McCrea, a retired great-grandmother, gave up much of her life. ``I used to be very active in my church, singing in the choir, volunteering. I have not attended church in 10 years.''

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