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Plans under way to provide help for caregivers

POSTED: June 11, 2008 5:02 a.m.

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Taking care of a person with Alzheimer’s disease often means putting your own life on hold.

"The caregiver, 24/7, cannot leave (the patient) alone. They just don’t get a break," said Jocelyn Pryor, executive director of the Guest House Adult Daycare Center in Gainesville.

But help is on the way. The Guest House is partnering with Legacy Link, the Area Agency on Aging in Gainesville, to create a new support group for caregivers of patients with Alzheimer’s and other types of dementia.

An informational session is scheduled from 10:30 a.m. to 1 p.m. Tuesday at First Presbyterian Church. Lunch is provided, and no pre-registration is necessary.

The meeting will feature a panel of experts on dementia, including Pryor and Sarah Carson, family support programs manager with the Alzheimer’s Association in Atlanta.

Carson describes caregiving as a "journey," and she said it’s a road you should never attempt to travel solo.

"Bring family and friends into the journey to support you," she said. "Some caregivers shut themselves off. But learning to care for yourself as a caregiver is not a luxury, it’s a necessity."

She noted that about 40 percent of caregivers become ill themselves, partly because of the stress.

"The caregiver is in a chronic state of grieving (because their loved one is not the same person they once knew)," Carson said. "It’s very common to become depressed. A support group helps them see that their feelings are normal."

Pryor said Alzheimer’s is different from other chronic diseases because of its slow but inexorable progression.

"It can go on for 10 years, and it just gets worse and worse. Often your sleep is disrupted because (the patient) is wandering around the house," she said. "A support group shows you that you’re not alone, that there are others who are going through this."

Carson said some caregivers find it difficult to accept their loved one’s condition, because other than the dementia, the person may seem healthy.

"They look the same, but they’re not the same," she said. "It’s an emotional roller coaster. One day (the patient) may be clear as a bell; the next day, the dementia is back."

Carson, who is also a licensed clinical social worker, counsels caregivers to try to have a sense of humor about the situation.

"Laughing is a great stress reliever," she said.

She added that it’s important for caregivers to learn to pace themselves. "This could go on longer than you ever anticipated," she said.

Through the support group, caregivers will learn about local resources that are available to them, including the Guest House.

"We (the Guest House) here so the caregiver can run their errands or just go home and relax," Pryor said. "We are about to expand our staff so we can take more people."

Roger Ray, communications director for Legacy Link, said after the June 3 orientation, participants will decide on a regular day and time for the support group meetings. He hopes to hold the first meeting later in June, at First Presbyterian.

Ray said he’s also working on setting up a respite care service, so that caregivers can leave their loved ones in a safe environment while they are attending the meetings.

For more information, call Legacy Link at 770-538-2650.



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