“I just went through the motions of getting through the surgeries and the chemotherapy,” she says. “Then, I started to panic and think that I was going to be left alone, that I was going to be a widow.”
At her husband’s encouragement, she decided to seek help. A social work counselor at MD Anderson League City, where Robert was receiving chemotherapy, sent a list of caregiver support groups. Cynthia chose one at MD Anderson’s Texas Medical Center Campus because it met at a convenient time.
“I don’t know what I would have done if I hadn’t had the support group. It’s just wonderful what MD Anderson does. They’re taking care of the patient, but they also want to take care of the caregiver,” she says.
I was able to deal with my feelings and realize that everything that I was feeling was pretty normal.
Cancer caregiver support group reduces isolation
MD Anderson’s Social Work department has offered the Care 4 Caregivers support group since 2007. It meets weekly at the Rotary House, a Marriott hotel attached to MD Anderson.
“People take care of each other,” says Tiffany Meyer, one of five social work counselors who takes turns facilitating the group.
“Caregivers often come in and say, ‘I don’t really like talking about my stuff, but I didn’t realize how much I needed to talk,’ or ‘I didn’t realize that it’s OK for me to share some of this stuff with other people.’ I love how it decreases the isolation that a lot of caregivers feel.”
While some caregivers – especially those from out of town – can’t attend support group meetings on a regular basis, others return again and again. Cynthia has attended about 10 times.
“Those meetings are very comforting – to be able to share your experience and hear other people’s experiences,” Cynthia says. “I was able to deal with my feelings and realize that everything that I was feeling was pretty normal.”
Cancer is a family illness
Fear, anxiety, anger, frustration and guilt are all common feelings among caregivers. Educating and supporting caregivers to understand and deal with these feelings are goals of a support group called Cancer is a Family Illness, offered by the Psychiatry department since February 2018.
“One person in the family is diagnosed, but the whole family feels this disease,” says Carmella Wygant, a clinical psychotherapist.
“Any change will bring about loss and grief, and one of the most common reactions to grief is anger.”
Wygant describes a typical caregiver: “They’re no longer able to go to work, their income is compromised, they are completely out of their element, and they are at the whim of the different appointments that are necessary, so they are very aware that they have no control over the situation. A lot of the reason there’s anger is that the old strategies that worked in a life that was cancer-free don’t work now, when there is cancer and so much uncertainty.”
Just being present makes a difference.
For cancer caregivers, being present makes a difference
Many caregivers also experience feelings of powerlessness and vulnerability, Wygant says. They are trying to gain control over things that they cannot control, and they feel guilty, frequently revealing self-blame when they can’t do more for their loved ones.
“Most caregivers don’t like to ask for help because they’re the ones taking care of everybody else,” Meyer says. “We talk in the support group about getting comfortable with asking for help. Giving themselves permission to ask for help can be really important.”
Both Meyer and Wygant encourage caregivers to take care of themselves, so they can continue to support their loved ones.
“That is critical for every caregiver to know – just being present makes a difference,” Wygant says.
A safe space to voice feelings about caregiving
Wygant has requested and received grants from MD Anderson’s Volunteer Endowment for Patient Support to provide light refreshments for the Cancer is a Family Illness group. Refreshments may vary from cheese or fruit to decorative cupcakes or chocolate-covered strawberries.
“It seems so small, but it means so much to the caregivers,” she says.
Most important, the groups provide a safe place for caregivers to talk and share. Caregivers consistently say they are revealing feelings and experiences in the group they have never said out loud before.
“I think everybody comes out feeling better, a little more optimistic,” says Galvez. “It’s like, I’m going to be able to get through this.”
Request an appointment at MD Anderson online or by calling 1-877-632-6789.