Caring for the Caregivers

A growing need presents ministry opportunities

By Erin Dunigan | Presbyterians Today

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The Rev. Sharyl Dixon is now in her sixth year serving Kingston Presbyterian Church in Kingston, New Jersey. When she started serving the church — be it visiting the women’s Bible studies or shaking hands at the door after a service — Dixon realized that what she was witnessing, in different forms, was caregiving. For some in her congregation, it was caring for a spouse with dementia. For others, it was caring for ailing parents. For still others, it was caring for children with special needs. Dixon realized there was a need to care for those offering care to others. She began to wonder what might be done.

“To meet weekly seemed too much for those who are already scraping for any amount of time for themselves,” Dixon said.

So, three years ago she created a monthly gathering on Saturday mornings — a time when it seemed that caregivers might be able to get away for a few hours to simply check in, ask questions and connect. At one of the gatherings, Dixon read a poem by John O’Donohue called “For One Who Is Exhausted.” A few of the women attending asked her to read it again.

“There is this deep need to voice the difficulty of walking with and caring for other people and to be able to just admit ‘I am exhausted’ or ‘My mother, in her dementia, is really just not nice’ in a safe space where other people carry that burden as well,” Dixon said.

Dixon says the people who gather monthly are in a season of life that is exhausting, and they don’t know when it will end. Of course, the other difficult piece is that “ending” most often means losing their loved one. Many, she adds, did not see the season coming and had no idea how hard caring for their loved ones would be.

“People took care of their family members in previous generations and they were exhausted, but they didn’t always have permission to gather and hear others’ stories and walk alongside one another in them,” she said.

Roadblocks to attendance

One unexpected challenge Dixon has encountered is that those who would like to attend the monthly caregiving group feel as though to do so would offend the family member being cared for.

“I have had people say to me, ‘I can’t come because my family member doesn’t see themselves as needing care or would be hurt by my coming because they don’t understand that I am their caregiver,’” she said.

One woman who is in such a situation simply sits at her dining room table on Saturday mornings and prays for herself and the others who attend the group, Dixon says. Still others just don’t have the extra time to take for themselves. According to a 2015 report by the National Alliance for Caregiving and AARP, caregivers spent an average of 24.4 hours per week providing care. Nearly 1 in 4 caregivers spent 41 hours or more per week providing care.

As the U.S. population grows older, more Americans than ever find themselves in a family caregiving role. Churches can be a source of support for those caring for loved ones. Getty Images

At Kingston Presbyterian, in some months only one or two people attend the gathering. Occasionally no one comes. Every month Dixon’s secretary asks, “Should I put it back on the calendar?” And every month Dixon replies, “Yes, put it back.”

“I thought there was a need, and I thought it would address a real pain, but I had no idea how deeply this time would bless people — myself included,” Dixon said.

Kris Larson, a member of Southminster Presbyterian Church in Arlington Heights, Illinois, works as a business analyst for a local hospital. One Sunday after church she was talking to a couple and they realized there was a need in their congregation for a gathering of those providing care for others. So, with the church’s blessing, they organized what became a monthly gathering at the church.

Initially they invited speakers such as nurses, physical therapists and other professionals to provide education and information for those caring for relatives. The meetings were well received and regularly attended by a small group from the church. But, Larson admits, the monthly gathering never really turned into what she was hoping for.

She had hoped that it might become a group with more interaction among the members. Instead, it stayed in the presentation/information mode — likely, Larson says, because that is how it began.

Larson and her husband were both working full time and caring for her in-laws. As her in-laws’ condition worsened, the couple began to be overwhelmed.

“Organizing the group was one more thing to do, one more thing to think about,” Larson said. So, after a few years of meetings, the group disbanded.

Looking back, Larson thinks there might be ways to make changes and perhaps have such a gathering again.

“It weighs on my mind that this is something that we should be doing as a church,” she said.

One idea she has to help meet this need is to have a list of “substitute caregivers” who would be available to sit with a loved one so that the primary caregiver can attend worship, run to the grocery store or simply have a break.

One issue that became a challenge when the group did meet was that sometimes caregivers would bring their family member with them to the meeting because they didn’t have anyone to stay with the individual while they were away.

“It was hard to have them in the room with us and to talk in front of them because often we were not sure what they might be cognizant of and did not want to say something that would offend them,” Larson said. “If we had had another room set up for them, with someone to be there, that would have helped.”

Looking back, Larson also thinks it would have been helpful to have more people share the leadership load within the group so that it would not become overly burdensome to any individual.

Though her in-laws have passed away and Larson is no longer in a direct caregiving role, it is still something she thinks about.

“This is near and dear to my heart because it is such a need,” she said.

Creating a ‘second family’

Grace First Presbyterian Church in Long Beach, California, has had “People Who Care” for close to two decades. It is a program that began within the congregation, but now has developed into a partnership with the University of Southern California Family Caregiver Support Center. Yvonne Kuo, senior family care navigator for the USC Family Caregiver Support Center, leads the group that meets at Grace First.

“What we do is to find ways to provide support both emotionally as well as through information and resources,” Kuo said. One of those ways is through classes that Kuo teaches. She is currently teaching a nine-week class on stress-busting for caregivers.

Kuo started working at the center in 2001. Caring for caregivers is something she is passionate about.

“Sometimes I have known the caregivers for many years. Sometimes I have seen them start taking care of their mom, and then they end up taking care of their husband,” Kuo said. “I enjoy working with caregivers because I can see the support that they’re receiving, can help them with resources, and can let them know that they’re not alone.”

Knowing that they are supported in some way can help with the isolation that caregivers often face, she says.

In addition to facilitating the support group and teaching classes, Kuo also meets one-on-one with families to help assess their needs.

“The role of caregiver is often a role that people did not know they were going to walk into,” Kuo said. “We try to help them in the midst of that.”

She has watched transformations take place in her work with caregivers.

“What I have seen over and over is when a caregiver begins a nine-week class, they are often stressed during the first few sessions,” said Kuo. “But then after a few weeks, when they see they are not alone, that they have a forum for sharing, they feel less isolated, more supported and that they are not the only ones feeling this way.”

The Rev. Dr. Marion Park, associate pastor at Grace First, remembers when the group started meeting at the church some 15 years ago.

“We had a retired social worker in our midst who was a deacon who said we needed to start a care group for those who are caring for others. That is where the idea came from,” Park said. They invited the USC folks to lead the group, which began the partnership. The USC folks under the leadership of Kuo now lead the group, with the congregation providing the physical space.

But the congregation also continues to be involved in the more direct work of caring for the caregivers.

“We provide substitute caregivers for those who need them. How else could they be able to come to the events?” said Park. Because she has been serving the congregation for nearly two decades, she “has a list in her head” of people to call on in need.

“So, when someone calls the church and asks if we can provide someone to sit with their loved one so that they can attend a program or run an errand or have a break, I have an idea of who to call and ask,” she said.

Many folks in the congregation are retired and are thrilled to be asked to serve in this way.

“The retired folks have time on their hands and want to be able to serve in this way. It allows them to flourish as well,” said Park. “There are so many people who have the gift of hospitality and conversation who love this opportunity — it is empowering for them as well.”

Helping to connect new caregivers to existing resources has been an important part of the congregation’s ministry partnership.

“You have folks who all of a sudden have taken on a huge responsibility. It is important for them to know that they are not alone, that there are systems in place to help them and that they don’t have to reinvent the wheel,” Park said.

There has also been a surprise blessing in Grace Presbyterian’s ministry of caring for the caregiver. 

“Often the folks who have been a part of the group become like a second family, even if they no longer are in a caregiving role,” Park said. “It has been wonderful to see the community that has developed out of that.”

Erin Dunigan is a PC(USA) ordained evangelist living in Baja California, Mexico, where she founded Not Church, a gathering of atheists and agnostics who wish to deepen their spiritual journey. She is also a freelance writer and photographer who finds joy in riding her horse daily along the beach.

Who are the caregivers?

As the U.S. population grows older, more Americans than ever are finding themselves in a family caregiving role. According to a 2015 study conducted by the National Alliance for Caregiving and AARP, the average caregiver is:

• Female (60% of caregivers)
• 49 years old
• Married or living with a partner
• Employed outside the home
• Part of a household whose annual income is $54,700 (median)

How to help caregivers

The Presbyterian Health, Education and Welfare Association offers these tips for how congregations can help caregivers: 

• Arrange for scheduled meal deliveries with disposable containers to keep things easy.
• Offer to do mundane errands.
• Call or visit frequently.
• Sponsor a health equipment loan closet to make home care easier.
• Provide resources such as books about caregiving or information about

support groups, counseling opportunities or respite care options in your community. (Call the local Area Agency on Aging to find out more.)

• Invite a church school class or other group to send notes or cards of encouragement.
• Establish a family caregiver buddy system. Introduce caregivers in the congregation to each other for support.
• Include a moment of recognition during worship to thank family caregivers for their service to their families.
• Deliver audio or video recordings of worship services to their home.
• Excuse them from church responsibilities if they seem overwhelmed.
• Pray for the person receiving care and for the caregiver.

For more information, go to pcusa.org/resource/caregiver-sunday-rest-for-your-soul-19785

Did you know?

In 2014, approximately 40 million Americans provided unpaid care for an adult. By 2020, this population of caregivers is estimated to reach 45 million, caring for 117 million people.

Source: AARP

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