Fatigue Can Create Problems for Cancer Patients, Caregivers

NEW YORK-Many cancer patients struggling to return to normal lifestill believe in the John Wayne school of psychotherapy: "Toughit out, stranger," quipped Allen Levine, ACSW, at a symposiumon fatigue and cancer, sponsored by Cancer Care, Inc.

But the problem of fatigue is a serious one for both cancer patientsand their families. "The energy required to enter the cultureof cancer is tremendous," said Mr. Levine, assistant directorof social service at Cancer Care.

In the acute stage of cancer therapy, fatigue may cause patientsto have a short attention span and poor impulse control, withunfortunate consequences for their social interactions. They maytend to say what they feel too quickly. "They have to behelped to understand that their feelings may be out of control,"he said.

In the early stages, family and friends mobilize around the patient.They call, visit, bring food. "And then slowly somethinghappens," Mr. Levine said. "As the disease becomes chronic,people stop visiting. They call less frequently. All of a suddenthe patient experiences a type of social isolation."

The period when the patient is at home but still in need of carecan be particularly trying for the primary caregiver, generallya spouse. Since cancer often strikes people over age 50 or 60,their partners are also likely to be older individuals with theirown medical problems.

Many patients do not want a homecare worker in their house. Inwhat Mr. Levine calls the "multiple family," the primarycaregiver will get help from other relatives so that she or hecan get out of the house and take a break. But if the cancer patient'sfamily is "one-deep," the primary caregiver will beoverwhelmed.

"We have to take a look at the various kinds of depressionand anxiety that can occur when you become a prisoner in yourown home," he said.

Providing constant care for a spouse-giving medication, helpingthem get to the bathroom-can cause tension, he said. Caregiversmay feel they have become containers for the patient's anger andfrustration. "That has to stop. It's not helpful for thepatients or the caregivers," he stressed.

Problems After Treatment Ends

The family enters another period of stress when the patient hascompleted treatment protocols and tests show no cancer. "Everythingis supposed to be wonderful," Mr. Levine said. "Thecaregivers expect things to go back to normal. But the patientis totally fatigued and, in fact, may be more depressed than before.Then the family may get angry with the patient."

They should keep in mind, however, that this is a time of greatanxiety for patients. Before, their energy was mobilized to dealwith the treatment. Now, they start wondering whether their canceris coming back. Also, when radiation therapy ends, they are attheir peak of tiredness from the treatment, he said.

Partners who expect to go back to a normal sexual relationshipmay wind up feeling rejected. "The phrase 'Not tonight, dear,I'm tired' has a different meaning when you've been on chemo,"he said.

It is very important to help people to look at these issues andto reconstruct the intimacy of their relationships as the diseasebecomes chronic, he advised. But first the patient must be givenpermission to be fatigued.

Health-care professionals can help by letting patients know theyare aware of these issues, making it possible to talk about them."Patients should know that they do not have to be ashamedof their feelings, or of their fatigue," he said.

Participating in support groups can be extremely helpful. Butgroups that meet in a hospital may reopen the trauma of treatment,Mr. Levine advised. He noted that in some cases teleconferenceshave proved valuable, especially for fatigued patients. "With25 people on the phone, you would think it would be chaotic.But people are so desirous of listening, as well as being heard,that it's an incredible process," he said.