Caregiver chronicles: Caregiver's needs evolve along with treatment

After a long and successful career in broadcast journalism in Houston, North Texas and Oklahoma, Judy Overton joined MD Anderson in 2008 as a senior communications specialist. Her husband, Tom, was treated at MD Anderson for renal cancer. He died in April 2007. Judy's occasional posts will cover aspects of the cancer experience from the caregiver's perspective.

I didn't think much about being a caregiver until I wasn't one anymore. It isn't something in which you test the waters. You are simply thrust into the situation as I was almost eight years ago.

Family and support groups can ease the abrupt transition, says Djuana Fomby, a social work counselor at MD Anderson. Fomby facilitates a caregivers' only support group every Tuesday, 12:30-1:30 p.m., at the Rotary House in the patient guest relations room on the MD Anderson campus.

Care4Caregivers is an opportunity for those supporting cancer patients to speak openly and honestly about their experiences. Fomby says the needs of a caregiver differ based on the stage of their loved one's cancer experience.

Master the system
In the first six months of diagnosis, the caregiver is in a state of shock.

"While they want information, they're overwhelmed," Fomby says. "Their feelings are fragile and their anxiety level is high-pitched. They don't have an understanding of what being a caregiver is going to mean. They're thinking strictly, 'Save my loved one's life.'"

Once someone has been a caregiver for three or more years, Fomby says, "They're calmer. They come to the realization the cancer will be there, the financial challenges will be there. They settle in to a new normal."

Even though they are at different stages in the process, those facing life as a caregiver for the first time benefit from people who have been through the process.

"The support group fosters mutual aid," Fomby says. "My feeling is that the participants are the experts. They know what resources are available and they freely share information at the meeting."

The cost of survivorship
Research is ongoing regarding the toxicities of cancer therapy but, Fomby says, not enough research has been conducted about the stresses caregivers endure on a long-term basis.

"The people who gathered round you early on may have dropped off," she says. "They don't realize how draining the experience is for you. They want to respect your privacy and think everything is fine."

Fomby also says caregivers tend to forget the resources that are at their disposal.

"Our culture lacks a sense of community," she says. "People are reluctant to ask for help. Unless they have someone to say, 'I'm going to bring you this casserole,' they tend to manage their situation on their own."

She says it's imperative that caregivers take some time off and reach out to available resources, whether it's behavioral therapy or chaplaincy.