Easing the Burden on Family Caregivers

By David Lewellen

A decade ago, Cookie Anderson bought her first house so that her aging mother could move in with her.

For years, Anderson, who lives in Milwaukee, had been driving 67 miles to Fond du Lac to help her parents. But when her father died in 2004, her mother’s dementia was worsening “and I couldn’t leave her there. I just couldn’t.”

Anderson moved out of her apartment and into a house with a first-floor bedroom, then reordered her life around caring for her mother, Rose, who was 91 at the time. “Sometimes she’d look at me and say, ‘Are you my daughter?’ And I’d say, ‘Are you my mother?’ Then she’d laugh and be OK.”

Anderson, who is single and an only child, kept friends up to date with weekly emails about life with her mom, cherishing the supportive responses. She took Rose to adult day care twice a week, as well as on other outings, and occasionally called on friends and godchildren for help.

Rose also received in-home hospice care in the two months before she died, in 2011, and Anderson hired a service to do household chores. “I couldn’t do this alone. I had read about burnout,” said Anderson, now 71. “I wanted to love my mom, so I had to take care of me, too.”

Most adults have been, or will be, a caregiver for an older person, whether that involves taking an aging parent into the home or simply checking on a neighbor.

About 776,000 caregivers in Wisconsin provide an estimated $5.8 billion in unpaid care for relatives, according to a survey by the AARP Public Policy Institute.

To recognize and assist those efforts, AARP Wisconsin is training existing volunteers to meet with caregivers across the state and direct them to more resources.

If you are interested in scheduling a meeting, contact AARP at wistate@aarp.org or call 866-448-3611 (ext. 56309) toll-free.

The AARP Caregiving Resource Center ( aarp.org/caregiving) includes links to support groups, home health care information and other resources.

Caregiving relationships “really do keep people out of the nursing home,” said Helen Marks Dicks, AARP state advocacy director. “Often the caregiver is the only one standing between that individual and an institution of some type.”

Looking for respite care
Wisconsin’s Family Caregiver Support Programs, at wisconsincaregiver.org, provide online discussion forums and a county-by-county resource directory of respite care and benefit information, care options and much more. “You walk away feeling that you’re not alone,” Dicks said.

“People have no concept of what’s out there to help them,” said Linda Marty Schmitz, 69, who leads a caregiver support group in Waunakee. “I can see where people just collapse.”

For more than 10 years, Schmitz cared for her parents in their home and then helped with assisted living care. After they died, in 2008, she and her extended family “were sort of like walking wounded,” she said. “It took a while to set up new routines.”

As well as helping individuals, AARP Wisconsin is advocating for changes in state law. Senate Bill 19, introduced in February, would require that when a person is discharged from the hospital, a family caregiver is notified and equipped to provide the necessary care.

At present, hospitals are not required to give a patient an opportunity to designate a family caregiver. When someone is discharged, many hospitals “send them home with printed instructions and hope that someone’s going to do it,” Dicks said.

AARP will also push for a law offering caregivers a state tax credit for the money they spend on medicine, hiring help and other costs. “We should acknowledge the economic impact,” Dicks said.

“Everyone at some point in their life is going to have to do some caregiving,” Schmitz said. “It’s an ongoing thing, it’s a very gratifying thing, and at the same time, it’s a very frustrating thing.”

For more information, call Wisconsin’s Family Caregiver Support Programs at 866-843-9810 toll-free.

David Lewellen is a writer living in Glendale, WI.