Caring for caregivers
Family caregivers are usually driven by love and a sense of duty when they agree to take care of a spouse, an aging parent or another relative. They take on the job wholeheartedly, vowing to provide the best of care so their loved one can continue to live at home as long as possible.
But it’s not easy. In many cases, caregivers, often elderly themselves, soon find themselves worn to a frazzle. They become physically, financially and emotionally compromised as they try to juggle meeting their charge’s needs, managing a household and dealing with feelings of grief over their lost lifestyle, lost time and the pending loss of their loved one.
There’s really no way to train for the job.
How does a wife prepare herself to decide whether symptoms are grave enough to require an ambulance? How does a daughter prepare to decide her father needs the advanced level of care offered by a nursing home? How does a husband prepare to take over the most intimate personal care rituals for his wife? How does anyone prepare to take care of a loved one who no longer recognizes them?
“A caregiver has to be the advocate, the judge, the decisionmaker, whatever is needed at the moment,” said Peggy Lutz, who started the McMinnville Caregiver Support Group.
But the caregivers don’t complain. They keep a stiff upper lip and a cheerful smile for their loved one’s sake.
Besides, there’s likely no one to complain to. Caregivers generally become isolated as they drop other activities in favor of staying home tending to their loved one’s needs. And if if they were free to go visiting, who would understand?
Other caregivers would.
They’ve dealt with the disappointments and confusion and worries and celebrated the good moments. And they have a wealth of knowledge about techniques and services that might make caregiving a little easier.
That’s why Lutz started a support group in 2009.
A caregiving veteran, Lutz wanted to provide a format for caregivers to get together on a regular basis — 90 minutes a week when they could take a break from their unpaid, 24/7 duties, spend time with people who empathize, ask relevant questions and share both worries and information.
The group meets from 2 to 3:30 p.m. each Tuesday at the McMinnville Senior Center. There is no charge, but attendance is limited to unpaid, in-home family caregivers.
In most cases, the caregivers expect the job to be long-term, continuing until the loved one dies.
But from time to time, someone who is caring for a spouse or other relative who’s gone through a debilitating illness or accident will attend to learn skills for a temporary caregiving assignment. Currently, for instance, one member is caring for a relative who is recovering from a transplant.
“Graduates,” who have lost the person for whom they were caring, also are welcome.
They can share their experiences with the group, becoming valuable resources. Continuing to attend also can be a helpful aid as they go through the grieving process.
In order to attend, some members ask a relative to step in for a few hours. Some hire a temporary caregiver. A few are able to leave their loved ones for brief periods.
Yet even during the meetings, many are apprehensive. Will the next call be a medical emergency? Or maybe their loved one will have a need that only they can fill.
If the phone does ring, no one minds the interruption.
Other than a portion of the time set aside for speakers, meetings are confidential. That way, caregivers feel free to discuss their hopes, fears, challenges and accomplishments without fear of embarrassing their loved ones or themselves.
No other people — not even the loved ones in their care — are allowed.
For this story, the group opened its doors to a reporter so members could talk about the benefits of a support group. They did not discuss their specific situations in detail, as they are able to do in private.
“It can sometimes be pretty tough,” Lutz said, pointing to the boxes of Kleenex within easy reach.
Carole Bova-Rice added, “You can’t cry at home. You can’t show that weakness. You have to be the tough one.”
Bova-Rice, a retired Air Force senior master sargeant, drives up from Independence for the support group meetings. She said she needs a weekly dose of interaction with other caregivers.
She was active in her church and veterans organizations before 2008, when her husband was diagnosed with terminal lung disease. Not only was she faced with losing her husband, but also the possibility of having to drop everything else in order to care for him.
“My life stopped,” she said. “You don’t realize how much of your self you lose.”
Eventually, Bova-Rice learned her long-term care insurance would allow her to hire part-time caregivers. Now she’s able to participate in the American Legion and attend the support group meetings.
“Talking with other caregivers gives me ideas so I can better help him,” Bova-Rice said. “That makes his life better and gives me some of my self back.”
For some caregivers, the support group is a lifeline, a one-of-a-kind connection to others who understand completely, said Susan Pynn, who joined when she began taking care of her husband.
She said she’s gained valuable insights from the weekly meetings. “I wish I would’ve had some of this information before I was caregiving,” Pynn said.
Maureen Tracy also attends for further information that will help her care for her aging parents.
A substitute teacher now, Tracy left a full-time job in another state so she could care for her mother and father, who live in separate houses but both needing care. “I’m the single child who’s available,” she said.
Tracy said the support group, which she attends when she’s not working, has been invaluable. “The connections I’ve made to resources ... the people ... have helped with the amazing amount of hoop-jumping” that goes into dealing with various agencies and health-care organizations, she said.
Member Bev Monroe noted that it’s important for caregivers to keep learning. The more they know, the more they can help their loved ones.
“Things constantly change,” she said.
She also praised the group for helping members deal with the isolation that often results from caregiving.
She knows that firsthand: She was becoming isolated and exhausted trying to do everything herself as she cared for her husband, who has Alzheimer’s. Her children convinced her to seek assistance from Northwest Senior Services, and Kelsey Evans there directed her to the support group.
“Here, we share openly, so you don’t feel alone anymore,” she said. “We help each other.”
Longtime member John Adams joked that he attends the group because he can’t avoid it. Lutz is his neighbor and won’t let him miss a meeting.
In reality, he said, he attends because it’s helpful. It offers the chance to learn.
He’s filled several notebooks with information. The more he learns, he said, the more he can help his wife, who was diagnosed with multiple sclerosis in 1994 and broke her hip two years ago.
Other caregivers understand how he’s taken on more and more duties as his wife has become less able to accomplish physical tasks.
Other people may not, he said. “If any one of us went to any other group, just a general group of people, and tried to explain, they’d walk out,” he said.
And the weekly meetings give him — and his wife — a break.
“When I was working, my wife had the run of the house all the time,” he quipped. “Now I’m retired. She’s kind of happy to get me out of the house.”
Starla Pointer, who is convinced everyone has an interesting story to tell, has been writing the weekly “Stopping By” column since 1996. She’s always looking for suggestions. Contact her at 503-687-1263 or firstname.lastname@example.org.