Cancer hurts caregivers, too

By Liz Szabo, USA TODAY

Frances Hornback rushed her husband to the emergency room in June after he began coughing up blood. It was only then, 18 months after her husband first began having respiratory problems, that he was diagnosed with lung cancer.
About a week later, the couple was back in the ER. But this time, it was Frances who was ill.

Frances, from Carson, Calif., had been overwhelmed with fear, crying uncontrollably and unable to function. Desperate for relief, she swallowed half an anti-anxiety pill that had been prescribed for her husband. She immediately developed a dangerous reaction to the drug and became dizzy and began hyperventilating.

Experts say that Hornback's distress is all too common. Although the caregivers of cancer patients bear a heavy burden, they often suffer in silence, says Jimmie Holland, a psychiatrist at New York's Memorial-Sloan Kettering Cancer Center.

In a new USA TODAY/Kaiser Family Foundation/Harvard School of Public Health poll of cancer survivors and their families, one-third of respondents said cancer caused someone in the household to have emotional or psychological problems.

New research suggests caring for patients with cancer is as stressful as looking after someone with Alzheimer's. In an unpublished study of more than 1,200 caregivers presented at a meeting of the Society of Behavioral Medicine in March, Youngmee Kim of the American Cancer Society found severe psychological stress in 67% of those caring for cancer patients and 64% of the caregivers of Alzheimer's patients.

Few people appreciate how much the workload of cancer caregivers has increased in recent years, Holland says.

Hospitals today discharge cancer patients "sicker and quicker," often sending them home when they are in great pain or before their wounds have healed, Holland says. That can leave untrained caregivers to provide services once handled by experienced nurses, such as giving pain medication and hooking up intravenous antibiotics.

Melvina McCree of Conway, S.C., became infected with a flesh-eating bacteria after having a mastectomy in 2002. Doctors operated seven times to cut away dead tissue. McCree, 62, finally left the hospital after seven months — still with painful open wounds — and moved in with her daughter, a single mother of three.

Although a nurse visited regularly, she was reluctant to return in the middle of the night, when McCree often suffered the most. A machine designed to suction fluid from her wounds often malfunctioned, setting off an alarm that unnerved everyone in the house, says McCree's daughter, Sharon Funnye.

"I felt like I was going to have a nervous breakdown," says Funnye, 42. "I love my mother and I would do anything I had to do. ... But you are unwell, and you get angry at times, and you feel guilty."

Even Funnye's youngest child, Shantell, started to worry. The girl, then 5, didn't want to go to day care for fear of leaving her grandmother home alone.

Cancer also took a financial toll.

Funnye often missed work to care for her mother. Medical bills added up. Funnye and her mother fell behind on their mortgage payments, and both lost their houses.

Caregivers such as Funnye clearly need help, says Laurel Northouse, director of the socio-behavioral program at the University of Michigan Comprehensive Cancer Center.

Her research shows that cancer patients and caregivers who have therapy sessions with trained nurses tend to cope better than those who receive their usual care. Patients feel less hopeless and more optimistic about their disease; families also have more positive attitudes about taking care of their sick relative.

Programs like these can be costly. Northouse received $2 million to develop and test the programs. Her current study will measure whether counseling can save money by keeping patients and caregivers healthy, and by encouraging them to seek help before problems become more advanced.

Betty Townsend of Warren, Mich., says she fell into a deep depression after her husband was diagnosed with lung cancer. She credits Northouse's free counseling program for her recovery.

"I didn't even want to get up in the morning," says Townsend, 65. "After I got involved with this, I wanted to learn everything I could about cancer.

"This program gave me something to live for, to fight for, to be there for my husband."

Hornback found help, too.

She now sees a therapist and takes medication for her anxiety. She and her husband also attend support groups and meditation classes at The Wellness Community, which serves cancer patients and families around the USA.

Although Funnye has largely managed on her own, with some help from her brothers and children, she wishes she could join a counseling program like Northouse's. After living together in a rented house for the past year, Funnye has just moved into her own place. Funnye's oldest daughter, 19, will continue living with her grandmother.

"It's not like she will be totally without anyone here," Funnye says. "I will still come every day. I just need some 'me' time."