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Wednesday, November 14, 2012
Caregivers for relatives with dementia need help and support
From the Cleveland Plain Dealer:
Caring for a family member with a debilitating illness such as dementia can be an exhausting responsibility.
Nearly 65 million Americans provide the day-to-day needs of ailing family members at least 20 hours weekly, according to AARP. Of those, 15 million take care of people with Alzheimer's disease, a brain disorder that results in loss of memory and intellectual functions.
In many cases, these caregivers, generally family members, are not getting paid and not getting much physical or emotional relief. Fatigue can be a danger, whether the care is given in their own home or a relative's home, experts say. Or even making decisions long distance.
"Most people who are providing care tend to be doing it in isolation, and their journey can be very lonely," said Eric Hall, president and CEO of the Alzheimer's Foundation of America.
Other family members sometimes don't know how to react, and friends tend to back away, leaving the caregiver alone," he said. "There is no cure, there is no silver bullet. It comes down to care. The question is: What do we do now to support the families?"
Experts say that caregivers need to avoid burnout by learning about the illness, asking for help, being organized, setting aside time for themselves and facing their own emotions. Often, there is one person in the family who takes on a large part of the responsibility.
Happily sacrificing but exhausted
Jeff Jenkins, 50, spends his days as a nurse at the Cleveland Clinic caring for critically ill patients and his evenings at home caring for his mother.
"My mother sacrificed everything for me," the Avon Lake resident said. "I want to do the same. It's my choice."
That's why Jenkins, a divorced father of three daughters, decided to keep his mother at home rather than in a care facility.
Though he has help at home when he's at work, Jenkins said, the routine can be draining.
"Sometimes I don't have any time to unwind. It's like my drive home is my only downtime," Jenkins said.
Though she has not been formally diagnosed, Jenkins' 78-year-old mother, Victoria Jenkins, likely has dementia, he said. Jenkins first noticed a change in his mother four years ago following surgery to repair her broken wrist after a fall.
"She wasn't enjoying things that she typically enjoyed. She was an avid reader, but began saying, 'I really can't get into this book. I don't know what's going on,' " he said.
This was a noticeable change because his mother, who had worked in the bridal boutique of a department store and then in food service for a school system, had always been active and independent.
Jenkins said his mother would be more confused and scared in a facility. She's more likely to maintain her abilities longer living at home.
In-home support good for caregiver
More people appear to be choosing the in-home route.
The at-home senior-care industry has been growing by about 15 percent annually in the past several years, said Larry Mason, executive director of Senior Helpers of Northeast Ohio. The agency provides nonmedical personal care and companionship.
Mason said about 40 percent of the people his employees look after have dementia or Alzheimer's.
Families, who often pay out of pocket, contract for outside help from a few hours a week to around the clock. Hourly rates for this nonmedical care can be as much as $25.
Experts say that caregivers who regularly schedule activities outside the house ultimately lengthen the time they can do the job effectively.
Jenkins agreed. "Church is big for me. It gets me back in order so I can function and not lose my mind."
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