The forgotten survivors

Caregivers of cancer patients often suffer depression and other problems post-treatment, but researchers say support is lacking.

Birthdays haven't been too kind lately to Mike Dunne and his wife, Freda Yarbrough. Take Dec. 23, 2004. Instead of celebrating her fabulous 50s alongside family and friends, Yarbrough spent the day reeling from the news that Dunne had stage 4 throat cancer. Within weeks he plunged into a dizzying cycle of radiation and chemotherapy at a medical center near their home in Baton Rouge, La.

Some of the most toxic drugs used to battle cancer were fed into his veins. The treatments were debilitating. He lost 70 pounds. He slept a lot.

It wasn't all bleak. After awhile doctors reported the disease was in remission.

Then, in August 2005 - on Dunne's mother's birthday - Hurricane Katrina tore through New Orleans, flooding her apartment within a foot of the ceiling. By that time, Dunne was back at work covering the storm for The Advocate, his local newspaper. He and Yarbrough, new media director for the paper's Web site, worked 45 days straight, only returning home to change clothes and sleep for a few hours.

Within months their lives grew increasingly tempestuous: The cancer recurred, spreading to lymph nodes in Dunne's chest.

On a recent Monday, he received chemotherapy yet again - one of several nauseating treatments that are part of what is now his third round of cancer cocktails.

But afterward, it was Yarbrough who threw up.

The past two years she has been at the center of a physically taxing and emotionally exhausting whirlwind of work, mounting health-care costs and sleepless nights. She has spent hours keeping bedside vigil as Dunne has undergone countless tests and treatments.

"I wish I could get doctors and treatment centers to understand that the patient isn't the only patient," Yarbrough said.

"The caregiver is sitting there watching the chemo, sitting by the bedside, staying awake watching to see if something needs to be changed. There's got to be some recognition that the caregiver is struggling to survive emotionally and physically."

Caregivers in crisis

They are often called the forgotten survivors.

Spouses and partners of cancer patients, they have made it through their loved ones' sleepless sprint through treatment, only to embark on their own physical and mental marathon.

Now a UF study reveals these caregivers are nearly three and a half times more likely to be clinically depressed than healthy peers and frequently experience a host of other problems that linger for years.

The findings from the study, the first to examine the long-term effects of cancer treatment on the quality of life of partners of blood and bone marrow transplant recipients, appeared recently in the Journal of Clinical Oncology.

"Part of what we're trying to do is bring attention to their experiences and the fact they are indeed cancer survivors as well - they are impacted by cancer, both directly and indirectly, and clearly are profoundly affected by it," said Michelle M. Bishop, Ph.D., a research assistant professor in the department of medicine's division of hematology/oncology at UF's College of Medicine and the paper's lead author. "We are concerned they may be neglecting their own mental health needs. The larger caregiver literature would say they are likely to neglect their own physical health needs as well."

The UF study, funded by the National Institutes of Health, highlights the strain of caregiving at a time when cancer patients are discharged "quicker and sicker" - and as they live longer than ever. The American Cancer Society estimates there are about 10 million cancer survivors in the United States.

UF researchers collaborating with colleagues at Northwestern University, the University of Kentucky and the Medical College of Wisconsin collected data from 177 partner pairs from 40 North American transplantation centers. The pairs had to be together since treatment, which took place on average about seven years before the study began. Survivors had to be in continuous remission from breast cancer, acute or chronic leukemia, or lymphoma.

Participants, including a comparison group of 133 healthy peers, completed 26 standardized questionnaires that evaluated their physical health and numerous quality of life measures.

The study is the first to show that partners can experience poorer outcomes than survivors many years after treatment, particularly in social and spiritual quality of life.

Researchers also found that while caregivers reported fairly good physical health overall, they experienced fatigue and difficulty concentrating and were less likely to note positive personal growth in the aftermath of cancer caregiving. In addition, they tended to suffer emotional, sleep and sexual problems at levels on par with survivors, but perceived less social support, less marital satisfaction and less spiritual well-being.

About 20 percent of caregivers experienced clinically significant levels of depression, similar to the survivor group (about 22 percent). In contrast, only 7.5 percent of controls experienced depression. In addition, those reporting significant depression - and presumably in the highest need of mental health services - were least likely to be receiving counseling or medication, Bishop said.

"We were surprised by some of the findings because we had hypothesized that cancer survivors would be at greatest risk of long-term emotional and physical effects of treatment, as they were the ones undergoing the rigorous treatment regimen," Bishop said.

The paper's senior author, John Wingard, M.D., director of UF's blood and marrow transplant program and deputy director of the UF Shands Cancer Center, said families are subjected to "a pressure cooker of emotions and challenges" in the wake of a cancer diagnosis. Treatment typically requires lengthy stays at a specialized tertiary care center hundreds of miles from home. Families frequently face financial hardship as careers are put on hold and health-care costs mount. Caregivers often juggle tending to partners with raising children.

The study calls attention to the need for screening family members and providing them with information, support and counseling.

"There is a need for a lot more research in this area," said Laurel Northouse, Ph.D., R.N., a professor of nursing at the University of Michigan School of Nursing who studies the impact of cancer on patients and caregivers. "We know the effects of illness extend to family caregivers. I think this kind of important work suggests we now need to move to interventions to help patients and families. We know the stress is there; now we need to help them get the kind of services they need to cope."

A lonely road

When it comes to finding support, caregivers are often on their own, said Yarbrough, 55.

In a recent e-mail to Bishop she wrote:

"The one thing that has stood out so vividly to me is how much care the cancer patient gets and how little care the caregiver receives from both the medical community and in work/social/familial relationships ...

"''¦ Everyone thinks the caregiver has had the same 'eureka - I know what life is about' moment that the patient has. No, we're just exhausted, angry, resentful but wholly unable to publicly voice our feelings because it wouldn't be socially acceptable ..."

At the treatment center where Dunne goes, there is a giant wall of pamphlets for every kind of cancer. But there is nothing for the caregiver, Yarbrough said. In the chemotherapy room, patients rest in recliners, while family members sit in regular chairs - or on the floor. And there isn't a place to put a laptop to finish some work while her husband receives treatment, which can last as long as eight hours.

"There is no acceptance that you have to continue your life to continue paying the bills; you can't just give up your job and devote 24 hours a day (to caregiving) because you're not going to have money to pay the bills," she said.

"You've got to tend to business."

Yarbrough said it would help if health practitioners set aside time at every office visit to ask caregivers questions about how they are coping.

"Having one sheet of questions for doctors and nurse practitioners to ask the caregiver would be helpful, things like 'How are you feeling today? How is the patient doing? Am I seeing today at the office what you see at home? Does he sleep? Does he eat? Is he angry? How are you doing? Can we explain something better to you? Do you have someone you can talk to" said Yarbrough, who has been married to Dunne for 26 years.

The UF findings emphasize the need for physicians to remember that providing emotional support and teaching patients and their families coping skills are often as important as focusing on fixing physical problems, researchers say. Practitioners also must work on identifying at-risk patients and families who may need extra attention from the health-care team.

Still, remarkably, many caregivers do quite well, Bishop said.

"I don't want to give the impression that it's all terrible and there's no hope," she said. "One of the tremendous gifts of working with cancer survivors and their families is to witness the incredible resilience they often exhibit.

"What we're trying to do is learn from those who seem to handle it fairly well without too many big bumps in the road, and then also identify those who may be more vulnerable to problems," she added. "If we can identify them early, then we can intervene early and make it more likely that they too could have a smoother journey through this process."