With a little direction, caregivers can be a critical resource to patients struggling with cancer pain.(GRAHAM FRENCH/MASTERFILE)Many patients turn to a loved one or close friend to help them through the debilitating effects of cancer pain and treatment. The crucial role they play in helping a cancer patient through their illness cannot be understated.
Jen Singer, 41, of Kinnelon, N.J., relied heavily on her husband Peter when she was diagnosed with non-Hodgkin's lymphoma.
"I don't think I could have made it through without my husband," says Singer. "He was not only fighting with the insurance company, he was just my biggest advocate when it came to everything. He just wanted to make sure that I felt good."
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Pam, 45, has cared for her mother, Lois, 67, since she underwent breast cancer surgery in December 1999 and subsequently began chemotherapy and radiation.
"During her treatment she called me every day. She just needed reassurance that somebody cared, and that somebody was going to take care of her. And I was her transportation for every appointment," says Pam. "She still really needs attention; and when it's really bad she needs more."
Pam keeps track of her mother's medications and ongoing treatments for pain.
"Giving her that attention just relaxes her and makes it better," she says.
Be clear about your needs
"Don't be afraid to ask for what you need," says Cathy Bueti, 36, of Brewster, N.Y., who underwent treatment for breast cancer. "The caregiver can feel very lost and not know what to say or how to help you. As a patient, the more that you can really ask for what you need is a good thing."
For Dennis Botts, 55, of Pineville, La., that meant hanging a "No Visitors" sign on the door of his hospital room one day while being treated for esophageal cancer. He woke up later to find that a friend had slipped into the room, taken a pair of pajamas, washed and returned them, without him even knowing she was there. "She could write a book on how to be with somebody without aggravating them," he says.
Next Page: Seven ways caregivers can help alleviate pain [ pagebreak ]Seven ways caregivers can help alleviate pain
- Eliminate stress. Stress will exacerbate the pain, says Kathleen Foley, MD, a neurologist and former chief of the Pain and Palliative Care Service at Memorial Sloan-Kettering Cancer Center. So blocking agitations can be a big help. While Singer was being treated for non-Hodgkin's lymphoma, she says her husband "kept the kids and the neighbors and the phone out of mywell, I hate to say 'out of my hair,' because I didn't have anyout of my way when I wasn't feeling well." He also made sure her pain prescriptions were filled and always close-by.
- Know when to step back. "Well-meaning people can be overbearing at times, even with the best of intentions," says medical oncologist Timothy Moynihan, of the Mayo Clinic in Rochester, Minn. If cooking dinner for the family is something that gives meaning to a patient's life, a caregiver might offer to help instead of taking over the job.
- Provide a distraction. Take them shopping, go to a park, watch a moviewhatever might give the patient an opportunity to focus on something other than pain. When cancer kept Cathy Bueti stranded at home and feeling isolated, friends stopped by with ice cream during their lunch hour. "We just sat in my apartment and ate some ice cream and caught up on some girl talk. That was something that was really simple but helped me get out of whatever moment I was in."
- Just listen. Breast cancer patient Susan Henle, 55, of Lakeland, Fla., found some relief in being able to just "whine" sometimes to her family about the pain. "The more I talked to them, the better I would feel," she says. And for Singer, perhaps the most important thing was simply knowing that her husband took her pain seriously.
- Be a relaxation aide. Caregivers can help patients reduce muscle tension and stress by guiding them through focused-breathing and other meditative exercises, says Terri Ades, director of cancer information for the American Cancer Society. Adding massage in a firm, circular motion around areas of pain (avoiding red or swollen areas) may also help.
- Manage meds. Family and friends can also play a crucial role in helping the patient stay on-schedule with pain medication, since missing a dose could make the treatment less effective, says Ades.
- Caregivers can help at the doctor's office too. Patients are sometimes asked to bring a family member to an appointment. "Patients minimize pain for many reasons," says Dr. Foley. "But the family member sees what the patient can do at home. They hear them thrashing about at night. They're more objective observers."
L. Michael Glodé, MD, who specializes in prostate cancer at the University of Colorado Cancer Center, also sees a caregiver as someone who can provide a "third opinion."
"I'm quite happy to have that third party to help me understand what the patient is trying to tell me. And also understand if the patient is minimizing things that they should otherwise be more concerned about."
"I've done that," says Jen Singer. "I try to be the strong, everything-is-fine type of person. Pete will tell the doctor, 'No, she was much worse than she's telling you how it is.'"
Next Page: Dr. Glodé notices that some of his prostate cancer patients are bad at owning up to pain. [ pagebreak ]Dr. Glodé notices that some of his prostate cancer patients are bad at owning up to pain.
A patient will ascribe pain to yard work or other exercise. "And then the wife will say, 'No, this is bothering you a lot. You no longer sit in the chair without moving around to get comfortable. Doctor, it really is bothering him more than he's letting on.'"
Caregivers need help too
Eduardo Bruera, MD, chair of the Department of Palliative Care and Rehabilitation Medicine at University of Texas M. D. Anderson Cancer Center in Houston schedules "split visits" in which the treatment team talks to caregiver and patient separately.
"The caregiver frequently needs a little bit of private time with the physician or nurse because they are usually having concerns about what is going to happen to the patient and whether the patient is using their medication appropriately."
In effectively helping their loved one reduce their pain, caregivers can relieve stress for themselves. "Whatever reduces the pain in the patient lessens the pain on the caregiver," says Dr. Foley. So keeping the patient as pain-free as possible may have the added benefit of keeping the caregiver from burning out.
"The hardest thing for my husband was watching me be in excruciating pain. I think more than just about any part of cancer, that's hard for him to watch," says Cathy Bueti. "So knowing that he could help me feel better, even if it's in a small way, I think it made him feel less helpless. And it made me feel less alone."