Caring For Caregivers
A cancer diagnosis affects more than just the patient. A new study finds spouses report a similar physical and emotional quality of life as the patient
When Betty Garrett’s husband, Gene, was first diagnosed with esophageal cancer she didn’t want to go to a support group. She was going to make it on her own through his five weeks of chemo, radiation and surgery. Everything seemed fine after the surgery, that is, until a year later when the cancer came back.
“I went back to Baylor University Medical Center and asked about a support group,” Garrett, Dallas, Texas, says. “I had finally reached the point where I needed to ask for help.”
However, they only offered a support group for the patient and caregiver together.
“I didn’t want him to hear how tired and scared I was,” she says. “So, the hospital and I developed a group for caregivers themselves. It was so nice to be around others who understood what you were going through. A group that could help you celebrate the good, and be there for you with the bad.”
Her experience led her to create a Web site for caregivers, www.caregivers4cancer.com
“I knew other caregivers were going through the same thing and there wasn’t a comprehensive site about all the issues on the Internet,” Garrett says.
Laurel Northouse, Ph.D., R.N., co-director of the socio-behavioral program at the University of Michigan Comprehensive Cancer Center found in her study the burden of illness tends to fall on one partner. If the husband has been diagnosed, he is going to rely on wife.
“Health care providers focus on the patient forgetting the illness takes a toll on the caregiver,” Northouse says. “They need to be provided with support and information to make sure they are providing the best care for the patient. Without knowing anything, the caregiver has less confidence in being in charge.”
Garret says to ask questions. “The doctors want you to be involved. Don’t be afraid to tell them that you don’t understand something and to explain it in layman’s terms.”
But the most important thing of all is to take care of yourself.
“If you are not taking care of yourself, you can’t give your loved one the best care,” she says. “It is okay to take time out for yourself.”
She says let people be involved. Garrett is writing a book, “Hiccups to Hospice: Survival Guide for Cancer Caregivers,” that provides different lists to help caregivers through this time.
“Being a caregiver is a journey, and you can control that journey with knowledge and help,” she says.
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