Caregiving: An exercise in frustration -- and love



Joyce Lindquist's day is an exercise in frustration -- hoping Ron Huston, her partner, is all right while she takes computer classes, then more "begging calls" to find services for Huston, who, at 61, has Alzheimer's disease.

"Do you know who offers help if you're under 65?" said Lindquist, 54, of Bloomington. "Just about nobody. It's bad enough if you're older, but if you're under that magic age, you're in trouble."

Before his diagnosis three years ago, poor performance nearly caused Huston to be fired from the aircraft-parts assembly job he had held for 28 years. He continued working for a few months, but retired rather than switching to a job sweeping floors.

For a year he helped Lindquist at a medical-records company. But his abilities continued to falter and he retired again. Then Lindquist was laid off last March when her employer moved her division to St. Louis.

Now she is trying to balance her studies with caring for a man who can carry on a conversation but no longer can drive, write checks or go for a walk by himself. Huston's condition will continue to deteriorate from the progressive neurological disease that afflicts about 4 million Americans.

Stories like theirs are the subject of a two-hour public television program called "And Thou Shalt Honor," airing Wednesday. It is an intense look at issues faced by 10 caregiver families from around the country.

The program also examines the work of the Rev. Lois Knutson of Montevideo, Minn., who ministers to aging members of her congregation and a nearby nursing home. Another segment features an innovative program at the University of Minnesota called the Aging Game, which teaches medical students what it is like to be old and frail.

An estimated 30 million adults -- one in five U.S. households -- are providing significant care for older loved ones, a number growing as the population ages.

"You know, as a state we're trying to find ways to help caregivers," said Jim Varpness, director of aging and adult services for the Minnesota Department of Human Services.

"When you help caregivers, you're helping families, you're helping older adults stay in their homes longer -- and you're saving taxpayers billions and billions of dollars," he said.

Minnesota spends more than $1 billion a year to help pay nursing-home costs of more than 25,000 people, driven into poverty by the high cost of care. The state spends millions more to help some of the poor and near-poor remain in their homes.

"Family caregivers are the first wave of assistance," he said. "If they weren't there, I don't know how society could cope. We simply couldn't pay the bills."

Grateful for the years

Every caregiver has a different story, a different set of challenges, a different way of measuring the rewards of caring.

"For me, I have to keep thinking about what we have now. So much of our future is leaking away," said Lindquist.

"We've been together for more than 12 years, and we're going to stay together. I'm grateful for the years we've had, and I'm grateful for the years we still have ahead of us," she said. But it will be different. She thought that she would retire at 62 and the couple would move to Arizona where both have relatives. "Now I'll probably still be working when I'm 70."

But first, she needs to get a job -- maybe as an administrative assistant in a hospital -- when her schooling ends in a few weeks.

"And to make that work, I've got to get some help for Ronnie. I can't just leave him alone all day," she said. "He needs help with everything. He'll forget to eat lunch."

One hope: Opportunity Partners, which offers supervised work for people with disabilities, will give him a two-week tryout to see if he can perform simple assembly work.

"Metro Mobility can get him there, although way early. But they can't tell me for sure that they can get him back home," Lindquist said.

"Tell me why things have to be so hard for people whose only crime has been to get sick," she said. "Ronnie has been such a good guy, and our friends and family are really trying to help out. But this is so hard, just so hard."

Getting the leftovers

A hundred miles west in Montevideo, the Rev. Lois Knutson, 53, has worked for about seven years with older people and their families in her congregation at Our Savior's Lutheran Church.

"Older people tend to get the leftovers in the spiritual life of the church, and it shouldn't be that way," she said. Knutson developed a program of ministry to seniors and wrote a book, "Understanding the Senior Adult: A Tool for Wholistic Ministry," to help other congregations.

But helping older people is not enough, she has found. She has been given a $12,000 grant from the Louisville Institute at Louisville Presbyterian Seminary to develop a program to help caregivers.

"Ministry to caregivers is something that I think we do even less well than ministering to older people," said Knutson, who helps care for her mother in southern Minnesota, making the 400-mile round trip at least monthly.

In Minneapolis, Dr. James Pacala is working with students who will become professional caregivers -- physicians.

In a program designed by Dr. Chad Boult at the University of Minnesota, Pacala puts about 190 students a year through a daylong experience of what their futures might hold, assuming that they will be old someday.

With adaptive equipment that simulates vision loss, arthritis and other chronic diseases common in old age, the students must put up with such life situations as impatient store "clerks" and condescending nursing home aides.

"This started as an elective in 1993, but it was so popular -- students told us it was so important -- that it's now a requirement," Pacala said. "We found that students who take the course have much greater empathy for the problems of frailty."

In Bloomington, Lindquist is resigned to a continuing struggle to find help caring for Huston.

"If I hire a personal care attendant to come in, at $30 an hour for two to four hours a day, it will mean that I'll be working primarily so that Ronnie can stay with me," she said.

"But we'll do whatever it takes to keep going. That's what you do with people you love."

-- Warren Wolfe is at wolfe@startribune.com.

© Copyright 2002 Star Tribune. All rights reserved.

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"Events in our past seem to slip further away with time. But what happens when they circle back and meet us head on....in the present? Before we allow ourselves to be consumed by our regrets, we should remember the mistakes we make in life are not so important as the lessons we draw from them.." Outer Limits(Last supper)