Caring and coping: How family caregivers manage

Every morning at 7, Barb Haines starts her day. Depending on how her husband, Bob, feels, the hours between daybreak and bedtime can be challenging or not so stressful. They are always rewarding, though.

For two years, Bob has been living with amyotrophic lateral sclerosis, or ALS, a degenerative muscle disease. She is his chief caregiver, making sure he is cleaned, fed, medicated and driven to doctors' appointments.

To accomplish all those tasks, many days she has to lift her 74-year-old spouse out of a reclining chair into a motorized wheelchair.

“When I think of it, I have to do everything for him that I have to do for myself,” she said. “We take for granted the little things we do every day like brushing our teeth. For me, I can go quite a long time until (the stress) catches up with me. Then, I feel overwhelmed.”

Thankfully, she has her grown son, Daniel, who lives close to his parents. He helps by going to their house regularly during the week and doing some of the lifting. He provides relief with some of the round-the-clock physical and emotional demands of being a caregiver.

The Les Turner ALS Foundation helps too. Its monthly support group gives Barb and Bob, both retired West Dundee employees, more encouragement.

“When the group meets, we talk about ways to make things easier for us. We share tips, advice and encouragement,” Barb. “Before this started, I never knew anyone with ALS. I'm learning about it as I go along.”

This month's meeting was especially appropriate because November has been designated National Family Caregivers' Month.

The West Dundee family is not alone. According to AARP, it is among 40 million families nationwide who are choosing to keep their family members at home and take care of their needs from problems triggered by birth defects, chronic illnesses, crimes, and accidents.

Instead of placing their loved ones in nursing homes or other long-term care facilities, many families are bearing the financial and emotional strains to ensure the mothers, fathers, husbands, wives, sons and daughters receive care in familiar settings.

Many do it with memories of how active and vital their loved ones were before their lives changed. Those memories can be comforting or unsettling.

“Bob was always active. He was the building inspector for West Dundee. He loved to rebuild cars and remodeled most of our home,” Barbara said. “We never saw this coming.”

A life-changing accident

The Mravik family of Elgin never saw their life-changing incident coming either. Nineteen years ago, their 15-year-old son, John, fell from his bicycle, hitting his head and crushing two vertebrae.

Since then he has been a quadriplegic, depending on his parents, Gerald and Joyce, to help him function and even thrive. Since his accident, John has graduated high school, earned a bachelor's degree and later a master's degree in teaching English. These days he's a full-time English instructor at Elgin Community College.

“We're used to caring for him,” said Joyce. “On the days he's at school, we wake up at 3 a.m. It takes three hours to get him ready.”

That includes lifting, showering, shaving, dressing and feeding the 34-year-old man.

“When he was younger he wasn't as tall or heavy. Now, we have a lift that helps him out of bed into his wheelchair,” she said. “It's become a way of life. We have been doing it for 19 years, but thank God his brain wasn't injured.”

Months after the accidents, well-meaning medical professionals suggested placing him in a nursing home.

His parents wouldn't hear of it.

The quality of his family care cannot be matched by an institution, she said. They know his moods. They know when he's having physical problems, and they know how to calm him.

Most importantly, John is still at home living with his family.

“He has nieces and nephews who come over and see him. His 3-year-old niece loves to climb on his (motorized wheelchair) and feed him Cheetos.

Challenges and worries

The devotion comes with a price for the Haineses, Mraviks and millions of other family care givers.

Joyce and her husband worry about John's care in future. Both are in their 60s.

Barbara Haines is troubled with her husband's condition as it worsens.

“Right now, we are on a plateau, but I worry about what symptoms will come next,” she said.

The Les Turner Foundation is helping her prepare just as family and friends are helping the Mraviks plan for John's future care.

Meanwhile, both families realize their well-being is as important for them to continue and deal with the daily stress.

Barbara continues exercising and walking her dogs. Joyce is working as a fourth-grade teacher.

“I was going to school to get my teaching degree when John had his accident,” Joyce said. “He told me if I stopped studying and doing what I wanted, his accident would be tragic.”