In January 2007, Rev. Suzanne Paul noticed a trend. People in her congregation began approaching her with questions about caring for an aging parent. They expressed concerns about stress, lack of resources and, perhaps most importantly, a need to simply talk about what was happening to them.
Paul, who leads the New Hope Universalist Unitarian congregation in New Hudson, Michigan had at that point cared for her own aging parents for 10 years, and she knew well the pain and questions associated with caregiving. She followed up with  some research and discovered a lack of support groups in her community. Paul felt she had a lot to share and knew that others did, too, and she decided to do something about it.
She thought, “Maybe if we joined forces we’d be able to help one another.”
So she stared a caregivers support group at her church. The first Wednesday of each month, caregivers – mostly adults caring for aging parents – get together to share their experiences. The group, which is not religion-based and welcomes anyone from surrounding communities, provides a platform for people to share experiences and offer advice, friendship and a sense of support.
Paul, whose mother died just one month prior to the group’s first meeting, said, “Sometimes it helps a lot to say ‘This is what happened’.”
Chris Goldberg, who organizes caregiver support groups for Adult Well-Being Services in Detroit, feels that providing a safe space for caregivers to simply talk about their experiences is the most important aspect of caregiver support groups. When she was first asked to assume responsibility for the groups three years ago, she did a great deal of research and came prepared with resources and information. But she found that while helpful, information was not the primary need of the group members: being heard was. She learned to step back and let the members simply talk and support one another. Once she did that, she said, amazing things followed.
“I have met so many wonderful people who are so respectful of one another,” said Goldberg of the groups she facilitates.
“They really listen and support one another.” Older members, or “veterans” of caregiving, nurture the newcomers, who are often gratified and relieved to learn they’re not alone. Past caregivers occasionally take part in current group sessions to relay their experiences, and to let others know there is life after caregiving.
That life can be hard to imagine for the many involved in the daily emotional, physical and financial pressures brought on by caregiving. The National Caregivers Alliance estimates there are 44.4 million caregivers in the U.S. who provide unpaid care to another adult age 18 or older. The biggest challenges those caregivers report are finding time for one’s self, managing emotional and physical stress and balancing work and family responsibilities.
“So many people are trying to do the right thing,” by caring for an aging parent or relative, said Goldberg. The pressures, however, can be great. “You have to be aware of a balance,” she said.
Goldberg knows firsthand the pressures of caregiving. A staff member of Adult Well-Being Services for 36 years, she also cared for her aging father for four years. Despite a deep knowledge of available resources and excellent support from family and friends, caring for her father wasn’t easy.
She cites a lack of affordable, consistent respite, and the emotional stress related to making decisions for one’s parents, as the two biggest challenges facing caregivers – challenges she faced herself. Goldberg finally decided to hire home care to help ease her responsibilities. “You’ve got to be open to sharing care with others in order to survive the caregiving,” she said.
Goldberg’s groups, which vary in number from 10 to 15, meet in a number of locations in Wayne County. Some of the groups have different focuses, for example a new group she recently started for people caring for a spouse. The meetings are completely non-judgmental and confidential, and, Goldberg says, often become a lifeline for caregivers, allowing them to be heard and validated.
Cassandra Ponder, a medical social worker specializing in geriatric services at William Beaumont Hospital in Royal Oak, Michigan has seen an increase in the numbers of caregivers while relief for caregivers remains scarce. She noted that finding help for middle-income caregivers can be especially challenging, since they often make too much money to qualify for help, but not enough to pay for it.
Ponder, who organizes caregiver support groups for Beaumont, also sees role reversals as a challenge for caregivers. A comment she hears frequently is that the person being cared for is no longer the person the adult child once knew. Coming to terms with that fact can be a difficult process. Support groups let people know they are not alone. “There are other people going through the exact same thing, or worse,” Ponder said.
The support groups are important, she continued, because they serve as a crucial outlet for caregivers who are often angry and confused about the role thrust upon them. The groups, which are unstructured and follow the agenda of the members, often highlight the need for caregivers to take care of themselves and not feel guilty doing it.
“My advice is to take care of the caregiver,” said Ponder. “Because if you’re not functioning well, you can’t take care of your loved one.”
Ponder also advises caregivers to use their support systems. She often encounters people rejecting help because they want don’t want to inconvenience others, but in order to stay well enough to help a loved one, she said, getting help is the best path to take. Frequently, that starts with attending a support group.
Go here for a list of some of the caregiver support groups in Southeast Michigan.
|
