June 11, 2010 -- Ed Grace’s journey as a caregiver began in December of 2004 when his wife, Diana, a nonsmoker, was diagnosed with stage IV lung cancer.
Over the next 2 1/2 years, the semi-retired aerospace engineer experienced many of the same emotional highs and lows as his wife as she underwent endless rounds of chemotherapy.
Grace, who had worked on the Apollo moon program, says he initially approached his wife’s illness as a problem to be solved, just as he would tackle an engineering problem.
He quickly learned that her cancer had its own agenda. In a diary he later published online, Grace writes about trying to stay upbeat while fighting anxiety, depression, and stress during the toughest days of his wife’s illness.
“We were told Diana would live for just three or four months, but we fought it hard and she lived for almost three years,” he tells WebMD. “There were many good times, but it was also very stressful for both of us.”
Stresses Similar for Caregivers, Patients
In earlier work, palliative care researcher Scott A. Murray and colleagues of Scotland’s University of Edinburgh identified four critical times that are particularly stressful for patients -- diagnosis, following initial treatment, at cancer recurrence, and during the terminal stage of the illness.
The researchers found these times to also be the emotional low points for caregivers in their new study, published June 11 in the journal BMJ Online First.
Murray and colleagues conducted 42 interviews with lung cancer patients and 46 interviews with their family caregivers. The interviews took place every three months for up to a year or until the patient died.
He tells WebMD that the caregivers reported feeling overwhelmed and depressed more often during these key times, as if they were riding an emotional roller coaster.
“Caregiver support initiatives that target these key periods may prove to be most effective,” he says.
Women Caring for Parents at High Risk
The American Cancer Society’s (ACS) ongoing ‘National Quality of Life Survey’ periodically asks cancer patients and their caregivers about their experiences in an effort to identify psychological stresses and unmet needs.
ACS research analysis Rachel Spillers Cannady says it is clear from the responses that interventions designed to ease the burden on caregivers are needed across the trajectory of illness.
She tells WebMD that caregivers are particularly vulnerable to stress early in the illness as they are assuming the new role. And after initial treatment ends, patients and caregivers often report depression.
“That is when the waiting game begins,” she says. “The patient and caregiver have been through the treatment and there is nothing else to do.”
Women with children at home caring for a sick parent seem to be particularly at risk for caregiver-related stress and depression.
Somewhat surprisingly, women in this situation who also worked outside the home tended to report less stress.
“It is almost like their job is a stress buffer or an escape,” she says.
‘Caregivers Need to Ask for Help’
Caregiver advocate Betty Garrett, says almost two out of three caregivers will experience some degree of depression and isolation following a loved one’s cancer diagnosis.
It was only after her husband’s cancer returned in the spring of 2004 that she knew she couldn’t do it all alone.
“He had gotten a clean bill of health, but then we found out the cancer had returned with a vengeance,” she says. “I felt like I had been kicked in the gut. I knew I didn’t have the energy and emotional stamina to keep doing it all by myself.”
The Irving, Texas businesswoman looked for a caregiver support group. When she found there wasn’t one at Baylor University Medical Center, where her husband was being treated, she worked with the staff to develop one.
She also wrote the book From Hiccups to Hospice: A Survival Guide for the Cancer Caregivers to help others experiencing what she went through.
“There are many things I wish I had known at the beginning of this process,” she says. “It is a roller coaster ride and you might as well go ahead and accept it. And you need to ask for help from family and friends.”