More family members are nursing sick relatives at home

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She moves in a frenzied swirl as she reminds herself of the multitude of tasks she needs to do before leaving the house this morning. Jeannie O'Link-Kratzer needs to check her husband Ralph's blood sugar and pulse. If his pulse is off, he cannot take his heart medicine. Jeannie unwraps a syringe to inject insulin and carefully pokes Ralph, who cringes and lets out a slight cry.

"Did that hurt?" she asks.

Ralph nods.

"It wasn't supposed to," she tells him mournfully.

Now, she's getting breakfast for Ralph and a visiting nephew. Oh, and she probably should eat something, too, especially since she only had a couple of hours of sleep. Ralph, 65, is diabetic and recently suffered a massive right-brain stroke and a heart attack, leaving the former piano prodigy with limited mobility, considerable nerve damage, incontinence and a loss of cognitive ability.

Jeannie's day is not unusual for a growing number of Americans caring for ailing loved ones at home. As people live longer and more family members want to care for ill relatives at home, the need for caregiver services also is skyrocketing. Support groups for Alzheimer's or dementia caregivers alone have more than tripled to 154 statewide in the past decade, says John Kemp, executive director of the Minnesota-Dakotas chapter of the Alzheimer's disease and Related Disorders Association.

These caregivers are often juggling new responsibilities at home with careers and feelings of guilt. "You begin to think of yourself as a bad person," Kemp said of feelings common among caregivers. "You can validate each other's feelings and regain some of those feelings of self-worth."

Minnesota and Wisconsin residents are graying, mirroring national trends. According to Census 2000 figures, 12.1 percent of Minnesota's population and 13.1 percent of Wisconsin's population is 65 or older. Both hover around the national figure of 12.4 percent. With aging baby boomers accounting for the largest population increases nationally and statewide, many expect interest in caregiving and support groups will only continue to rise.

To meet this growing demand, support groups are expanding their reach. Lake Ridge Health Care Center in Minnesota is extending membership in its free support group from only those with relatives in its adult day-care program to anyone dealing with caregiver issues.

"They're wondering if they're doing enough," said Kathy Karr, community relations representative and former director of adult day care services at the health care center. "You can learn more from each other than actual professionals sometimes. I also think it's just really good to talk."

During the new group's first meeting, several members spoke about the difficulties of daily chores, such as moving someone on portable oxygen, arranging transportation and weaving through the maze of the health care system.

"You get so stressed out, you have to try and make light of some of the things happening to you 24-7," Karr, caregiver to her legally blind mother, told the group. "Sometimes it's so difficult that you're all saints."

One man talked about how a computer has offered him some respite from the rigors of caring for his wife, who has Alzheimer's. A woman spoke of the uncertainty surrounding her husband's condition and the emotional upheaval after he began losing touch with reality. Then Jeannie spoke.

The 49-year-old New Brighton, Wis., woman talks about her need for "normalcy" after Ralph had a stroke and then a heart attack this year. Ralph had several years of minor health problems, but the stroke in January changed their life drastically.

"He's a different person," Jeannie said. "He's been reprogrammed by the stroke. We're both getting adjusted to what's left."

Ralph was musically gifted, beginning piano at 10 and playing Rachmaninoff at the same age. He spent years as a church organist and piano tuner, but the stroke has hurt his tonal ability and left some memory loss.

Jeannie wants to be there for him always, but she is realizing her own limitations. One day, she told the group, she found Ralph on the floor after she accidentally fell asleep.

The couple had to shelve the tuning business for now, but Jeannie has taken a part-time job at a hardware store to pay mounting medical bills.

A doctor recently told them Ralph probably has no more than two years to live. She kept talking through a burst of sobbing. Group members tried to console her. She recently started bringing Ralph to adult day care, which she hopes will give her a break during the day.

"Quite honestly, going to work is like a break," she said. "Caregiving is the hardest thing I've ever done in my life. It's exhausting emotionally and physically."

Ralph laments the loss of the person he used to be. When he has the energy, he plays piano with one hand. As Jeannie flits around the house, Ralph studies a book of his mother's favorite hymns, hoping to jar some memory.

"For the first time, I put my hands on the piano and no music comes out," he said.

Friends are less a part of their life as well. "Most people don't want to deal with illness and death," Jeannie explained.

She believed the support group will help fill a need that others cannot.

"Just hearing other people talk about what they're going through, it's going to be a lifesaver for me," she said.

In the meantime, Jeannie and Ralph want to take more trips, like a recent one to Michigan. Time is all they have.

"You try to figure everything out, but you just go nuts," Jeannie said. "You just take it one day at a time. When there are bad days, just be glad that they're over and have a good cry."

Copyright © 2014, Los Angeles Times
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