Caregivers need support too

Sessions prevent burnout, teach empathy

The Parkinson’s program at City of Hope National Medical Center in Duarte, CA, includes support groups for caregivers in addition to those designed for patients. Often people who care for loved ones with a chronic disease begin to do too much for the patient. The patient loses self-esteem, and the caregiver becomes burned out, says Willis.

Through support groups, caregivers learn not to take away the patient’s identity by assuming too many responsibilities.

"Anything patients can do for themselves, they should do, even if it takes longer," says Willis.

For example, if it takes a patient two hours to dress, then the family will have to start getting ready for an outing sooner.

Caregivers also learn to ask family members and friends for help. For example, they are encouraged to ask someone to stay with the patient so they can have a break. They are also encouraged to talk about their feelings with their chronically ill spouse. Through the support groups, Parkinson’s patients and their caregivers learn to communicate with one another.

"With Parkinson’s disease, people go through the stages of grieving just as if someone dies. They experience denial, anger, and finally acceptance. I think support groups help people get to the stage of acceptance," says Willis. ( For more information on providing education and support for caregivers, see October 1997 issue of Patient Education Management, pp. 117-119.)