Life can be complicated.
For those caring for an aging parent, there’s no ruler to measure the downhill journey, no formula to arrive at a wise decision, no map to help navigate the myriad services available. The needs of the caregiver are often overlooked, sandwiched among responsibilities to a parent, job and the rest of the family.
Beth Dreyer of Alsip and Marian Kickert of Palos Heights set out to simplify life for area caregivers by forming Transitions: The Sandwich Dilemma, a support group and information forum for adults dealing with the needs of aging parents.
Dreyer and Kickert were part of that sandwich generation. Both were registered nurses with full-time jobs, were married with grown children and had parents living nearby. Although the care of their own parents was not a problem, in their professional lives they were meeting families exhausted by the care of their increasingly dependent parents.
“We were seeing adults who were frustrated with multiple roles, giving themselves to a job, children and their parents,” said Dreyer, assistant director of nursing at South Shore Hospital in Chicago.
Transitions offers a forum for talking about feelings, learning what others have done in the same situation and connecting to resources, explained Kickert, director of nursing at Rest Haven Center, a long-term care and rehabilitation facility in Palos Heights.
With a Christian perspective but no affiliation with any denomination, the group was formed in January 1993. “The group helps individuals make the transition between the different levels of caregiving without losing themselves in the process,” Kickert said.
“It’s a difficult transition when your parent becomes more dependent. That’s when the sorrow and grief come in,” Dreyer said. “The parent you knew is gone. There are losses in your own life as you give more time to your parents. (If) your siblings are not there to help, there’s the realization that you’re it and you can’t meet the demands.”
For support group member Barbara (group members requested that their last names not be used), “I feel as if I’m in no man’s land. It’s a release to talk about it here.”
Responsible for her mother, who is in the early stages of Alzheimer’s disease but still at home, and a father who lives in a residential facility, Barbara admits, “Some days are better than others.”
At a recent Transitions meeting, she said it was not one of those better days. She was concerned about a friend who had had a heart attack, and she was worried about her father’s bills. She had been notified recently that the Illinois Department of Public Aid had turned down her father’s request for assistance. An appeal of the public aid ruling has been requested, but the bills continue to grow.
Venting such concerns is a primary purpose of the group. Members are asked to write their feelings down on a worksheet when they’re at home. Kickert explained that the homework offers a reality check, an affirmation of feelings and an opportunity for the caregiver to track his or her own transitions in the care process.
“A lot of times, they come feeling their cup is half empty. We try to make them feel that the cup is half full,” Dreyer said. “We want to make sure that the caregiver comes away nourished and their self-esteem bolstered. A lot of times, they are feeling worn down. We tell them, `You’re on track. You’re doing a great job in a difficult situation.’ To hear that gives someone the energy to go on.”
Often the caregiver becomes depressed and sick, Dreyer pointed out. “Healthy caregiving requires establishing workable boundaries,” she said, “learning how to say no and when it’s okay to say no and learning how to explore alternatives for situations.”
“The support from people who are in the same situation is invaluable,” said Sherry Krsticevic of the Self-Help Center of the Mental Health Association in Illinois. “Knowing that there are others who are dealing with the same emotions and issues can provide comfort and practical information on how to solve caregiving problems.”
In the support group, Barbara is able to tell Arlene, a new member, that she’s “been there and done that.” Her advice makes sense. “Go with your mother to the doctor,” Barbara says. “Just do it. And tell the doctor, `This is what she does.’ She may be angry for a week or two, but she’ll get over it and the doctor will have a clear picture of the situation.”
Coming to the group is an important first step. “Some caregivers have the sense that they have broad shoulders, that they’re St. Bernards and they can save the world. They have to recognize that it’s OK to get help,” Dreyer says.
The help may come in different forms. Because there are so many different stages of care, all that may be needed is an outside caregiver two mornings each week. That decision can be very freeing for the full-time caregiver, giving her a whole new perspective as well as two free mornings, Kickert explained.
“We do a lot of `maybes’ or `have you ever thought about,’ ” Kickert said. “And sometimes they come to the realization that Grandma needs to be in an institutional setting.”
“People carry around a lot of old messages from the past,” Dreyer said. “They might remember an admonition from their mother, `I cared for my mother. I expect you to care for me.’ “
With people living longer and healthier lives, it’s not unusual for an individual to go from a full-time job and part-time care of parents to retirement and full-time care of parents. “We work with people who have cared for their parents and it’s worked wonderfully. But 18 years later, Mom is still there. Their own lives are on hold,” Dreyer said.
For Lois, a support group member who began with Dreyer and Kickert in 1993, the group has seen her through a number of transitions. “I had Mother with me in my home longer than she had me in her home,” Lois said.
With her own health problems, which include dialysis treatments, Lois had to make another transition a year ago by putting her 88-year-old mother in a residential facility. Her mother’s adjustment has been good, and Lois’ regular visits include a good game of Scrabble with her mother.
“People care for each other because they care about each other,” says Jonathan Lavin, executive director of the Suburban Area Agency on Aging, an Oak Park-based planning organization for senior services and nutrition centers in suburban Cook County. Lavin said that according to a 1991 study conducted by federal agencies and the American Association of Retired Persons, 80 percent of elder care is provided by family.
“In the future, we’ll see more 90- to 100-year-olds who are healthy but need some help,” Kickert said. “It’s easy to place someone in skilled care. It’s more difficult to set up home care, to allow people to live at home with grace and dignity, but it’s very satisfying.”
Because the life of a caregiver is so busy, Dreyer and Kickert have adjusted their own expectations. “We’re not about numbers, although we have had meetings with a large attendance. Two-thirds of our communication is done on the telephone,” Kickert says.
The two take calls (about 10 a month) and share the same information that is given at a support group meeting, make referrals to the appropriate agencies or associations and follow up with mailings.
Area newspapers carry notices of the group’s meetings, information is sent to churches, and Dreyer and Kickert make presentations to groups. Funds for office supplies, written materials, postage stamps and phone bills come from their own pockets.
“We provide information with love and we listen. Once we’ve shared it, our hope is that the caregiver passes it on. In caring, they teach the next generation how to care,” Dreyer says.
“This is a helping ministry. We feel we’ve made a difference,” Kickert says. “There are times when we feel frustrated. We’d like to expand, but it’s a matter of time. We are both sandwiched between families, jobs and this volunteer commitment.”
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Transitions meets at 7:30 p.m. on the fourth Tuesday of every month except December in Palos Heights Christian Reformed Church, 7059 W. 127th St. For information, call Kickert at 708-448-4813 or Dreyer at 708-389-3959.
