Caregiver Conversations: support for caregivers

Look at a typical directory of cancer support groups and you’ll find listings for cancer types, survivorship, and coping. But not too many lists include groups for caregivers.

The UNC Comprehensive Cancer Support Program offers a twice-monthly group for caregivers. Kathy Roundtree, LCSW, is one of the group facilitators. “Caregiver support is important because patients depend so much on the assistance and support provided by caregivers. Caregivers often take responsibility for assisting with medical tasks, keeping up with insurance and medical information, providing transportation, keeping the household going, and helping the children if there are children at home. This extra burden can be rewarding, but it is also demanding.”

Ryan Keith, a caregiver for his wife, Jane, through two cancer diagnoses, agrees. He explains, “When someone gets cancer, the whole family gets cancer. Caregivers need to have special care for themselves. How do they do that? They need to be able to get counsel and have a place where they can share feelings.”

Ryan serves on the N.C. Cancer Hospital Patient and Family Advisory Board’s Steering Committee for Caregiver Conversations. “I was very interested in getting a group started for caregivers. I do this to honor the memory of Jane.

“Coming from not having this opportunity when Jane was sick to being here, hearing what people say, listening to people interacting and learning from each other is heartening. Caregivers in many situations are ignored. We think we’re doing something pretty special here, making this service available for caregivers. There are resources now in the new cancer hospital: massages, counseling, so many ways to help caregivers.”

Fellow Steering Committee member Larry Hutchison agrees. “When my best friend was diagnosed with Multiple Myeloma in the summer of 2010, I felt an immediate need to help him and his family. As I learned how to become a caregiver during the many visits to the N.C. Cancer Hospital, it became obvious from having many discussions with other caregivers that they too had multiple concerns and issues both short and long term. These caregivers needed help!

“During the long days of infusion, chemotherapy, and finally the BMT, I began doing research on caregivers in general. Based on the potential needs in the future in the US; approximately 2/3 of our population will at some time in their life have the potential to be a caregiver, a staggering number.

“During our caregiver support group sessions, it becomes so evident of the many needs and support the caregivers face.”

One support group member says, “ I like sharing with other people who are going through similar situations. You can share things with one another that you can’t share with the person you’re caring for because you don’t want to burden them or have them feel like they’re a burden to you.”

Another support group members adds, “After being a caregiver for a number of years for my spouse, we realized that in order to reduce the tensions and some of the activities that go on from constant caregiving that I needed to pay a little more attention to how to be a caregiver and as a caregiver to take care of myself. I needed to communicate with other caregivers and see what kind of problems they had and how they related to my problems. This group is helpful to me.”

Kathy Roundtree concurs. “In this group, caregivers have the chance to share the burdens they carry, and, as the proverb states, ‘A burden shared is a burden halved.’ They may get suggestions from others whose experience can benefit them. Caregivers can form new connections in the group that they may pursue outside the group for further support. The group also offers caregivers a time to focus on themselves and their own needs, something they often find difficult while trying to meet the needs of the patient.”

She adds, “Research shows that patients have better outcomes when their caregivers do better, and research also indicates that caregivers sometimes have lower quality of life than patients if not receiving support.”

Larry Hutchison concludes, “At UNC, we can develop world- class caregiver support group guidelines. We have the talent, passion, resources, and leadership to make this happen, and then perhaps this proven “Caregiver Model” can be adopted worldwide.”

The support group meets the second Tuesday and fourth Thursday of each month at 10 am in the Patient and Family Resource Center. The group is organized by Angela Ford, MSW, LCSW, who is a case manager with the N.C. Cancer Hospital, and Loretta Muss, coordinator of the N.C. Cancer Hospital Patient and Family Advisory Board.

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