Being a Family Caregiver Isn’t Easy

By Susan Ruiz Patton

Janina Sawicki put her children through college by taking care of aging women in her home in the 1980s. Now one of her daughters is using what she learned at home and at college to take care of her mother.

Sarah L. Becker, of Dayton, has been looking after Sawicki, 80, who has dementia, for more than five years.

“I said for years, if something happened to my mother, I want to take care of my mom. I do not want to put her in a home,” said Becker, 52, who quit her job as a health educator to take care of her mother. It hasn’t been easy.

“But she’s my mother. I wouldn’t have it any other way.”

About 2.4 million Ohioans provide unpaid care for their loved ones, according to an AARP Public Policy Institute report. The estimated annual value of that care is about $17.5 billion. It can be stressful, lonely and complicated work.

“Everybody thinks they know how to care-give, and they don’t,” said Deb Papes-Stanzak, 56, of Northfield, who cared for four terminally ill relatives, including her husband, from 2001 to 2008. She and others listed similar caregiver concerns:

• Stress. Becker’s life revolves around preventing problems. She never leaves her mother home alone, keeps an extra key available in case her mother locks her out, and got an alarm system to prevent her mother from leaving at night.

• Respite. “One thing about being a caregiver, you give up everything,” Becker said. “Your life is consumed by the person you are caring for.”

 

The devoted daughter plans every minute for her mother and takes her several times a week to an adult day care center for the memory impaired. It’s her only break, but she uses the time to do things such as grocery shopping or cleaning the house. She said there aren’t enough adult day care centers and even fewer that specialize in memory impairment.

• Money. “It’s bad enough you know your loved one is going to die,” Papes-Stanzak said. “Then add money stress.”

 

“I don’t know how we do it financially,” Becker said. “My husband has been downsized three times since I’ve been home.”

Among the big financial drains are medical and prescription copays as well as specialized supplies such as incontinence underpants.

• Resources. It’s “so important caregivers get with caregivers,” Becker said. “When they do, you learn bits and pieces from each other.”

 

Becker has picked up a number of tricks over the years that she shares with other caregivers.

For example, she got her mother to wear incontinence underwear by saying it was her girdle. Instead of fighting with her mother over taking pills, she hides them inside a fig bar. To keep her mother’s brain active, she gives her crocheting projects and asks her to “do her accounting” using a child’s math workbook. And she has found that the Yankee Candle scent Sparkling Snow will mask certain odors.

There’s no class you can attend to learn caregiving. For Papes-Stanzak, “as each person got sick, I had more experience.” By the time her husband was gravely ill, she had been through two caregiving and loss experiences.

Gov. John Kasich (R) and Bonnie K. Burman, director of the Ohio Department of Aging, have assembled a group of people and organizations familiar with caregiver issues, including AARP Ohio. Their task is to make recommendations later this year on how communities can be more sensitive to the issues facing caregivers and more helpful to them, said Bill Sundermeyer, AARP Ohio associate state director for advocacy, who cochairs the group.

“We don’t have answers, but we need to step up and think these things through,” said Sundermeyer. “We need to start to talk about it.”

For local resources, contact the Ohio Association of Area Agencies on Aging at ohioaging.org.

For additional information on caregiving, visit the AARP Caregiving Resource Center at aarp.org/caregiving.

Susan Ruiz Patton is a writer living in Willowick, Ohio