All About Multiple Sclerosis

More MS news articles for May 2003

'The ultimate in giving'

Caring for an ill or aging loved one can take a toll. That's why it's important that caregivers get help before they think they need it

May 22, 2003
Suzanne Perez Tobias
Wichita Eagle

Marcia Newton wasn't sure what to expect when she moved to El Dorado six years ago to care for her aging parents.

But she did assume -- correctly, it turns out -- that it would be among the hardest things she's ever done.

"It's physically exhausting and it's emotionally draining, because it's really the ultimate in giving," Newton said.

According to recent surveys and census data, more than 50 million Americans are providing care for disabled or aging family members. Tasks range from driving someone to the grocery store or a doctor's appointment to providing meals and daily physical supervision.

Unfortunately, many caregivers don't think about the most important aspect of caregiving -- taking care of themselves -- until it's too late.

"People just don't look for help until they're burned out and stressed out," said Annette Graham, executive director for the Central Plains Area Agency on Aging. The agency coordinates seminars, support groups and other resources for caregivers in Sedgwick, Butler and Harvey counties.

Part of the problem, Graham said, is that many caregivers don't think they're caregivers.

"If you take your mother shopping every week, you are a caregiver," she said. "But they think it's something more or something different."

Suzanne Mintz, president and co-founder of the National Family Caregivers Association, says caregivers are reluctant to seek help for various reasons.

Some see caregiving as their sole responsibility --"it's not part of our culture to ask for help, especially for the older population," she said.

Because caregiving is such a private issue -- much of it taking place in bedrooms and bathrooms, or involving personal finances -- some people avoid asking for help in order to protect a loved one's privacy.

For others, feelings of grief, exhaustion and guilt overshadow any desire to take care of themselves.

"It's 'How can I possibly do something nice for myself when he can't?' " said Mintz. Her book, "Love, Honor and Value" (Capital Books, $14.95), chronicles her journey as a caregiver to her husband, who has suffered with multiple sclerosis for 30 years.

"We need to get the message out (to caregivers) that they are not alone, and that caring for themselves is actually the very best thing they can do to provide good care for their loved ones," she said. "Because if they fall apart, then what happens?"

Unlike many caregivers, Newton, the El Dorado woman, approached her new role with curiosity and gusto. "I knew there was a lot to learn, but a lot is just trial and

error," she said.

She took a six-week course through Prairie View that teaches stress management, coping skills and other strategies for caregivers. She also attends a monthly support group, where she has met others dealing with similar or even more difficult caregiving situations.

"For me, that additional perspective was so important," Newton said. "We get together and help each other or just vent -- and we laugh an awful lot."

The most important thing she's learned so far, she says, is how to set boundaries. That meant finding a home health aide to help with her parents' physical needs, as well as a professional adult care manager to coordinate everything from medical appointments to lawn care.

"The key for me is that I do what I can do with a willing and joyful heart.... I don't want to get to a point where I'm angry or resentful, because that's no good for anybody."

She's also learned to relish the joys of caregiving, like the afternoons spent with her 90-year-old father, Virgil Volk. She often massages lotion into his hands and feet, or helps him shave and dress and drives him to the grocery store.

"It's a lot of work, but I cherish these times," she said. "He knows I love him, because I get to tell him every day."

Copyright © 2003, Wichita Eagle