Looking after ill family members for the long term
requires emotional support and extra patience
Sunday, October 3, 2004 | 12:00 a.m. CDT; updated 6:39 a.m. CDT, Tuesday, July 22, 2008

The phone call you hoped would never come just did. Someone you love needs continuous long-term care. Now what?

“If you don’t care for yourself, you can’t care for your loved one,” said Dorreen Rardin, the coordinator of Boone Hospital Center’s palliative-care program. The program prepares patients and their families to deal with terminal illness.

Many caregivers fail to recognize the importance of meeting their own physical and emotional needs, Rardin said. They tend to keep the struggle inside rather than seek help. Such help should not be viewed as charity, she said.

Caring for a loved one can range from helping with basic functions such as bathing and getting dressed to assistance with more practical responsibilities such as paying bills and picking up groceries. It also includes simply spending time together.

Many Americans are under the mistaken impression that Medicare will cover nursing-home costs and other long-term care expenses.

“Medicare does not pay for long-term care. We recommend that people get private insurance to cover these costs,” said Julie Brookhart, a regional spokeswoman for the federal Centers for Medicare and Medicaid Services.

A 2003 survey by the Henry J. Kaiser Family Foundation and the Harvard School of Public Health showed that 39 percent of respondents believed Medicare would cover these costs for people ages 65 and older. Twenty-three percent weren’t sure if they could tap the federal program.

In a similar poll by AARP, 55 percent of those interviewed thought that long-term stays in nursing facilities were covered by Medicare in their home states. Another 23 percent of respondents in the 2001 survey weren’t sure.

When it comes to the cost of long-term-care insurance, four primary factors are involved, said Duke Fennewald, a Columbia insurance agent who specializes in long-term care policies. He said those factors are age, health, minimum coverage levels and length of the desired benefits period. Some of the insurance plans even allow users to declare the costs as pre-tax expenses.

“I don’t plan on Medicaid or Medicare to be there when I need it, and I don’t want my children to pay for me,” Fennewald said.

Jennette Skirvin had to face many of the challenges herself, leaving her family in Missouri for nine months to care for her terminally ill mother in Ohio. She hadn’t been prepared for the emotional toll, she said.

“I did not know I could do it,” said Skirvin, a Centralia resident.

But she did do it, and the experience led to a dramatic career change for the former office worker. Today Skirvin is the live-in manager at Bristol Manor, a residential-care facility in Centralia.

She is required to be on the premises at all times, and her husband and college-age children must visit her there.

The unusual living arrangement took some getting used to, Skirvin said.

“The kids were not comfortable around so many old people,” she said. “But now it’s like they have 12 grandparents.”

It takes a lot of organization and tenacity to provide long-term care, Skirvin said.

She advises those who do care for a loved one to establish routines. “It will help both you and them,” she said.

Skirvin said she also relies on humor and prayer.

“You can’t lose your patience; you can’t raise your voice,” she said. “Don’t look for trouble — choose to be optimistic.

“If you’re not this person, find someone to help you. But by all means, try it. I didn’t know I could do it myself.”

For the first three months she worked at Bristol Manor, Skirvin was all alone. “That was hard — you’re up fixing them breakfast in the morning, and you’re not done until you have set the table for breakfast to prepare for the next morning,” she said.

Caregivers need a proper support team and must take regular breaks, Skirvin said.

Rardin gave the same advice.

The support team can help the caregiver with daily tasks such as cooking dinner or offering to stay home with the patient while the caregiver goes to a ballgame or the beauty salon.

“Your whole life revolves around the patient,” she said. “As a caregiver, it is sometimes hard to know what help you need.”

Support groups and caregiver seminars, including an ongoing series at Boone Hospital Center, are essential for sharing ideas and experiences, Rardin said.

“These people have been where you are, and sometimes they have solutions that we as professionals have not even thought of,” she said.

For Skirvin, time away from the job meant joining a group of free-spirited women with a penchant for colorful clothing.

“If your mother is depressed, join the Red Hat Society. It will cheer both of you up,” she said.

The Red Hat Society is an organization for women over 50 to celebrate life’s foibles through unrelenting optimism and humor. With a stated belief that “silliness is the comedy relief of life,” the women dress in red hats and purple dresses, drawing inspiration from the Jenny Joseph poem “Warning,” which features a similarly attired older woman.

Skirvin attends the group’s teas and gatherings with Mary Eva Squires, a Bristol Manor resident.

Even with coping mechanisms, not everyone is capable of caring for ill relatives — nor should they be expected to carry out that obligation, Rardin said.

“I know that being a caregiver is a blessing, but at the same time, I don’t want my children to have the burden of caring for me,” she said.

For those who can do it, however, rewards beyond the obvious can emerge.

“Caring is very gratifying,” Rardin said. “You learn patience, compassion, listening skills and organizing skills. These are all skills that you can use in other places in life.”

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