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Caring for those who care for others

By SHEILA REED
Published August 31, 2004

When my mother passed away, I knew exactly what to bury her in: cream suit, powder-blue blouse and white shoes. We had had many heartfelt, tearful and humorous discussions during what were the last four months of her life. The doctors said we would have six months to a year together. It was not so.

A day or so before the burial, imagine my dismay when I arrived at the funeral home with suit and shoes in hand only to be told by one of the morticians that the suit was fine; the shoes were not. "Your mother won't need her shoes where she is going," he said.

"Where she is going. . . . Where she is going. . . ."

How did he know?

Did the dead reveal secrets to those who dressed them in those final moments?

"Where she is going. . . . Where she is going. . . ."

"What do you mean, she won't need her shoes. Take them," I said. "This is what she wanted to wear."

He refused, in the most solemnly polite way, to take her shoes.

I pressed again. "Are you sure she won't need shoes? Why not?"

"Oh, no, she just won't need them" he smiled.

Eventually I left, with my emotions somewhere between dumbfounded and miffed.

I tried to calm myself. It's just a pair of shoes, I said repeatedly.

Maybe he was right. I had not had any experience with death or dead people up to that point. But I had been my mother's caregiver for those brief months and as her only child, I took those duties to heart. I could do nothing to ease the pain of her suffering, but certainly I could fulfill this last request.

It has been 18 years since those events, but there are days when my conscience plies me with guilt and I wonder if I let my mother down.

Being a caregiver is tough even if you could do everything right. Those who provide care and those who receive care make sacrifices on many levels. Today's cover story features one family's experience with caring for elderly parents.

It's a story that could be yours or that of someone you know. According to "Caregiving in the U.S.," a national survey, about 44-million people provide unpaid care to children, spouses, parents and other relatives. Seniors are living longer, but the challenges they face with aging are compounded if they have a debilitating or terminal illness, dementia or depression.

The circumstances under which a person becomes a caregiver are usually not optimal. The caregiver and the recipient often face significant adjustments.

"When you choose to become a caregiver, it's like being a parent. You can't just stop," said Debra Shade, president/CEO of the Neighborly Care Network in St. Petersburg. "The elderly person's world becomes smaller and your world becomes bigger. They rely on you more."

Communication is crucial as a caregiver. Many families face crisis without a hint of what a loved one wants or needs.

"Caregiving starts long before (a crisis)," said Kathy Egan, vice president of the Hospice Institute of the Florida Suncoast. "The more families can anticipate, talk and plan for a time when caregiving is needed, the easier it is for everyone. Most don't think about it until they are in a crisis."

Caring for a loved one with a terminal illness can be both daunting and rewarding. Time together can help heal frayed relationships or fortify existing bonds.

For those entering the caregiving arena, Egan said, "Try to approach this as an experience that is not only about the tasks of caregiving. Try to take the time to make the most of it for them and yourself. Have the caregiver ask themselves, and the person receiving the care, "What's important to you today? What do you want to do with the time you have left?' "

Caregivers, however, often need to be reminded to take care of themselves. Research shows that many caregivers suffer from stress, depression and poor health.

"If you don't take care of yourself it's impossible for you to be an effective caregiver to others," says Alexis Abramson, author of The Caregiver's Survival Handbook: How to Care for Your Aging Parents Without Losing Yourself.

The survey, sponsored by the National Alliance for Caregiving and AARP, shows that women are at the forefront of the caregiving landscape at 61 percent; 39 percent of the primary caregivers are men. The typical caregiver is a 46-year-old working woman who provides 20 hours of care each week to her mother. About 65 percent of care recipients are female and widowed; and 79 percent of care receivers are 50 and older.

Caregivers are average people trying to do what's right for someone they love. They don't have to be perfect and they don't have to do it alone. I didn't know that 18 years ago.

There is much ground to cover on this topic, so each month, from now through the end of the year, Seniority will provide information and resources for caregivers and receivers. In addition, if you have a question about caregiving, send it to: Caregivers Series/Seniority, St. Petersburg Times, P.O. Box 1121, St. Petersburg, FL 33731; or e-mail: floridian@sptimes.com put Caregivers in the subject box. We will not be able to provide individual replies, but will publish questions of general interest in Seniority.

- Sheila Reed, Seniority editor, can be reached at 727 893-8452 or toll-free 1-800-333-7505, ext. 8452. Write to her in care of the St. Petersburg Times, P.O. Box 1121, St. Petersburg, FL 33731; or send e-mail to sreed@sptimes.com

[Last modified August 27, 2004, 10:49:05]

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