This care-giving concern about being a burden to others, even if the caregiver desperately needs help and relief, can be an agonizing problem for someone giving long-term care to a family member. "Sometimes, congregations have no idea what a caregiver in their midst is going through,” acknowledges Dan Petry, chaplain at Greencroft, a retirement center in Goshen, Indiana. Dan and fellow Greencroft chaplain Randy Roth host a monthly support group for caregivers. “Full-time caregiving”, continues Dan, “is relentless.”
Cheryl Weber-Good, a spiritual director in St Catherine’s, Ontario, supported her parents for ten years as they declined with dementia. For her, this time of intense caregiving created a crisis of personal upheaval. “It is a personal journey,” she says, “and even though I had exceptionally supportive individuals in my life, I had to walk each part of the journey myself.”
The experience of being the primary caregiver for a loved one—a parent, spouse, child or other relative—can involve high levels of stress, anxiety, guilt, and, burnout. Caregivers are vulnerable to developing mental health illnesses. A staggering 16% of adults in the United States provided non-professional care to family members in 2015. As more baby-boomers grow older, the prevalence of caring for family members at home is likely to climb. With so many folks thrust into what is often an unknown, challenging, and life-changing territory, the church cannot ignore the experience of its caregivers.
Given that caregiving is such a varied, sensitive, and intensely personal experience, how can churches best support caregivers so that their paths are more manageably travelled?
How can churches best support caregivers so that their paths are more manageably travelled?
Based on his experiences with people in the support group, Randy believes that caregivers need spaces where it is safe to express all ranges of emotion including anger, despair, and hopelessness. The experience of a caregiver can change week to week or month to month (especially in terminal conditions), and so congregations need to understand that grief and suffering may span a long period. There are no simple solutions or easy answers. What is most important, believes Randy, is having consistent, trust-filled, non-judgmental relationships of support.
Corporately, the church is well-situated to step in and provide regular relief for full-time caregivers, especially when other means of respite are not readily available. “Having time away from caregiving responsibility is crucial for the mental wellness and physical health of caregivers,” said Randy as a firsthand witness. “However,” he added, “an hour here or there is isn’t enough and can feel like a drop in a bucket to someone who is already burnt out.”
Anabaptist Disabilities Network encourages churches to set up supportive care groups which can provide consistent and significant relief to long-term caregivers. Often, a pastor or church elder can help to set up a circle of care where several volunteers are willing to offer specific types of assistance. Once the circle of support has been established, the pastor or elder can step back to let the support group work with the caregiving person in need.
When Phyllis and her family joined Pleasant View Mennonite Church located near Goshen, Indiana, congregational involvement became a vital lifeline for her and her husband, Jim, in being long-term caregivers for their sons. Phyllis says she and her family have been blessed by the supportive care they have received from their congregation.
Pleasant View provided an invitational and nurturing space for them to openly tell their story. They provided meals and transportation, and have helped to care for their son when Phyllis and Jim need to get away on vacation. Pleasant View invited people from the congregation who felt led to join a formalized and structured care network which has helped support the family, discuss family-related decisions, and provide relief for more than two decades.
Phyllis believes that being active and involved in the church has been personally important for feeling connected to God’s daily provision, and for her overall wellbeing.
The Anabaptist tradition of community care and intimacy provides countless examples of how we can share one another’s burdens, honoring and supporting each other in our varied experiences. May we seek out ways of caring for one another so that we all may be witness to God’s persistence, presence, and promise while experiencing illness and disability.
We want to know how YOUR congregation has been a supportive presence for caregivers. Contact Denise at firstname.lastname@example.org, or visit the contact page. For more inspiration for how your congregation can help lighten the load of caregivers, check out Circles of Love and Supportive Care in the Congregation which highlight churches that have formed supportive care groups around individuals and families touched by disabilities.
Denise Reesor is Program Director for ADN. Special thanks to Dan Petry, Randy Roth, Phyllis Smith, and Cheryl Weber Good for their contributions and willingness to share openly for this article.