Watching a loved one sink into Alzheimer's, dementia can be harrowing

Barbara Center has raised four children, but now, at 59, she's helping care for her mother, who has Alzheimer's.

She's also dealing with two elderly aunts in nearby institutions. Both have Alzheimer's, and one is in the final stage of the disease.

"Sometimes it is really hard," says the Springdale, Ark., resident. She says she has seen her 86-year-old mother, Vera Romine, become more confused and difficult.

Center is one of 10 million Americans who struggle with the task of caring for a relative with Alzheimer's or some other form of dementia, according to the Chicago-based Alzheimer's Association.

Family caregivers help out with household chores and perform all kinds of services, including personal care. One in four caregivers have the equivalent of a full-time unpaid job: They're spending at least 40 hours a week providing services to a loved one, the association says.

Caregivers who don't get any relief can develop anxiety and depression and are prone to getting sick themselves, says Jan Busby-Whitehead, a spokeswoman for the American Geriatrics Society.

Alzheimer's often forces caregivers to step in and make decisions for a relative who's showing signs of impairment, says Larry Wright, director of the Schmieding Center for Senior Health and Education in Springdale.

About two years ago, after her mother ran a red light and got into a minor fender-bender, Center had to take away the car keys.

Her mother disagreed with the decision. "She got very angry," says Center, adding that her mother still insists she is a safe driver.

Kathryn Betts Adams, a researcher at Case Western Reserve University in Cleveland, says people with Alzheimer's and their family members will try to stick with familiar routines. Even as the confusion gets worse, they'll deny that a problem exists.

Center found that out the hard way.

She already had been providing care for her aunt with Alzheimer's when Romine, who had already been showing signs of confusion, was diagnosed about a year ago. Center thought she knew how to handle the situation.

"I just went full force into helping her," she says. But she soon found that her efforts sparked arguments with her mother, who didn't or wouldn't acknowledge the disease or the impairment in her thinking ability or memory.

Romine insisted she was fine, and Center's father agreed, so Center had to back off — even though she was left with constant worry.

"It's so frustrating, because they don't allow me to help the way I should," she says.

She has tried to hire caregivers to help out, but her parents have rejected each one for different reasons. So the family muddles along.

Center, who works part time as a clerk in a Cracker Barrel store, does the grocery shopping for her parents. She buys lots of frozen dinners that her father can easily pop in the microwave.

Center says her mother still wants to cook, even though she has started at least one fire. To avoid an argument, she tells her mother that the stove is broken: "There's just no reasoning with her."

Alzheimer's destroys the brain regions that govern thinking ability, judgment, and even emotion and behavior. People who have the disease can lash out in anger, and that makes the job much harder, Wright says.

Adams says many families resist getting help until a crisis occurs.

Center says her mother, who has balance problems, still takes a bath by herself. She worries that Romine will slip and fall, but she can't get her parents to agree to any assistance with the routine.

"It's going to take an accident of some kind before my father ever agrees to get help," she says.

The stress and worry has driven Center to seek out some solace, which she gets by going to a support group for people who care for relatives with Alzheimer's. She says just talking to others who are going through the same thing can help. Her children — she has three grown daughters who live nearby — also help out from time to time.

People with Alzheimer's can live for 10 years with ongoing destruction of brain tissue, Wright says. The disease starts off with mild memory loss and other subtle problems. But then they have more and more trouble performing even routine tasks. In the end, people with advanced disease are completely helpless and mute. They usually die of an infection or some other complication.

Center has seen this dreadful progression up close: One of her aunts is bedridden and doesn't recognize her. She has stopped eating.

For now, Center's mother still lives at home but has become increasingly difficult. She puts household items in odd places. She lashes out and is sometimes paranoid. She repeats things over and over and sometimes can't remember past events — even the good times.

"I see the deterioration and it scares me," Center says. "I don't know what we'll have to go through in the future."

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