IN CARING HANDS

 

The overall health of cancer patients can greatly benefit from the support of family, friends and caregivers, who, in turn, need their own system of support and encouragement.

 

by Alcia Di Rado

The newspaper headlines and television news proclaim the latest findings on cancer: New causes found. New treatments hold promise. Cures on the horizon.

But for families dealing with cancer, the day-to-day reality of living with the disease is an unspoken truth. Faced with seemingly healthy, intact families all around them, these moms, dads, children, siblings and friends of those diagnosed with cancer often feel isolated and overwhelmed.

Physicians and health care professionals say the ongoing support of these families and friends can be critical to the overall well-being of cancer patients. These health professionals, acknowledging the role and needs of caregivers and family members, have created programs for them-or keep them in mind when they provide care for patients.

Family as Partner

Talk to the family members or friends of a patient who sees Heinz-Josef Lenz, M.D., and chances are they will tell you: the USC oncologist treats them kindly, respectfully and as if they were important members of a team.

And to Lenz, they are important.

"The bottom line is that cancer patients benefit from family members or supportive people around them," says Lenz, associate professor of medicine and scientific director of cancer genetics at USC/Norris Comprehensive Cancer Center.

Lenz usually sees patients, from the young to the elderly, with cancers of the stomach, colon, esophagus and pancreas. Their treatments vary and are complex, and all the options can be overwhelming.

"Patients who come in to see me and are newly diagnosed often miss a lot of important information," Lenz says. "If they have family or friends there with them, they usually make sure all the information is absorbed.

"It gives me the assurance that I know there are others who were listening. They usually ask more questions than the patient, because they are not in the sort of bubble that is typical to a newly diagnosed patient."

In contrast, patients seeking treatment for a long-standing cancer that has not responded to other treatments often are extremely knowledgeable about their illness. "They want to get well, and are ready to fight the disease," Lenz says. "Unlike new patients, they may be less dependent on family and friends."

When Lenz sees a patient for the first time, he gives the patient and family power through information. He hands them a sheet of facts they need to know about the cancer and gives them a cancer survival packet-an info-packed folder with customized sheets on diet and related issues. And he gives the patient's family and friends jobs to do.

"Very early on, I put a lot of responsibility on family members," he says. "I ask them to get records, get family histories, or request lab test results. In the process, they feel good because they are helping."

Lenz always asks patients to bring a relative or friend with them to chemotherapy sessions. If he sees a patient is often alone or isolated, he calls the hospital's Social Services Department for help.

Supporters have to be careful, though, Lenz says. Sometimes family members just want to do anything they can to help, and in their fervor, they try to do too much and make matters worse.

 

"The more emotionally involved people are, the more difficult it is for them to be reasonable," Lenz says. "They need to have a clear head to help the patient make informed decisions about their treatment. There may be different options for patients, and the supporters have to understand that what they want is not necessarily what the patient wants."

That is where the physician comes in, says Lenz. It is critical for a physician to provide all the information, and then to get family members and the patient to all agree on a treatment decision.

"The technical, scientific aspects of a treatment have to be made clear to everyone," he says. "If it is clear, and family members have expectations of what will happen, often the anxiety level and confusion decreases and it is much easier to plan the treatment for the patient."

Lenz says supporters need to know they cannot fix everything, though. "Sometimes they get frustrated," he says. "They'll say the cancer was diagnosed too late and they get angry. This can be destructive in the management of a patient. Or they are angry because the cancer is not curable, and they are confronted with poor prognosis despite treatment."

It is helpful for family members to pull back and seek to understand how the patient feels, he says. "Sometimes I take the patient into the exam room and talk to him alone to make sure I have the whole story."

He says in those situations, the patients ask questions they would not ask with family members around. If it is a case where treatment options are running out, they may confide that they do not want any more uncomfortable therapies. And yet they may face pressure from family members who want them to keep trying all sorts of treatments to try to cheat death.

"Health depends not on the sheer amount of family involvement," Lenz says, "but on patients' comfort and the feeling they have all the support they need."

Care for the Giver

"Caregivers have been largely ignored. Only in the last couple of years are we finally waking up to their needs," says Lynette Ballard, L.C.S.W., clinical social worker at USC/Norris.

Ballard is part of a program at USC/Norris called "Strength for Caring," which meets twice a month for two hours in order to bring together people who care for those with cancer. She facilitates the program, along with oncology nurse Linda Person, R.N., M.S.N., who attends in order to guide caregivers through medical questions. The program is co-sponsored by USC/Norris and Ortho Biotech.

People who attend the meeting may be anyone caring for a cancer patient who wants to know more about caregiving or about stabilizing their family life during this stressful time. Often relatives and friends who are simply drained find energy and encouragement by talking to others in the same position.

"The support you get from being with people who understand you is invaluable," Ballard says.

"Caregivers often have no time, because they're getting things done," she says. "They're too busy to think of themselves. But caregivers need care, too, and we determined that this is an area where we want to serve."

During the meetings, Ballard teaches problem-solving skills. She ticks off a list of them: Caregivers need to gather certain facts about a cancer patient's health (for instance, how long has he had his symptoms?) before calling a doctor, and they need to learn the most effective ways to talk to physicians. They also learn different coping strategies to deal with crisis situations.

In addition, they need to recognize emotional problems such as depression, and learn skills for dealing with their loved one's anger or anxiety.

And, Ballard stresses, they need to watch out for themselves, or they risk growing ill, too. "Statistically, caregivers are a high-risk population," she says. "They get so caught up in their caregiver role that they burn out."

To fight that, she helps her clients find the activities that make their lives whole again.

"I had one caregiver who was getting more and more depressed," Ballard remembers. "Her husband was recovering from cancer, but he was going through a hard time. So I asked, 'What did you give up to care for your husband-what gave you peace?' She answered, 'I used to exercise.' So I insisted we find a way to make time for her to work out again.

"And we did," Ballard says. "Two weeks later, she was a rejuvenated person."

Keeping the Child in Childhood

It is one thing to grapple with the fears of losing a loved one to cancer as an adult. It is quite another to be a child and finding out that someone, like a parent, is seriously ill.

Questions-Will she die? Did I cause it? Is it contagious? Can she still take me to baseball practice tomorrow?-are all normal and may swirl through the minds of children when faced with the reality that a parent, sibling or other relative or friend has cancer.

Knowing that many patients have children who need help dealing with cancer, Alessia de Paola Gottlieb, M.D., recently established a clinic at USC/Norris for kids. USC hematologist Alexandra Levine, M.D., oversees the medical portion of the clinic, consisting of once-a-week personal sessions for children and families of cancer patients. Gottlieb, a pediatrician doing her adult and child psychiatry residency at UCLA, also sees patients outside of the regular clinic hours when they need special help.

She says the sessions have made it clear that each child and family has different needs, and no standard, by-the-book rules exist for helping kids deal with the fears of serious illness-though there are guidelines.

First and foremost, she tells families, do not lie about the illness. This does not mean you must tell a child everything, but what you tell them must be truthful. Children often know more about what is happening than parents think, and lies can break a key part of the parent-child relationship: trust.

They also may invent an exaggerated or incorrect version of the truth for themselves. "Children's imaginations are incredible," Gottlieb says. "If they are not readily told the truth, they may envision more frightening things for their mother or father than is actually true."

How and what to say to a child concerning a parent's illness should be determined by considering the developmental age of the child, she says. At age four or five, a child might think the cancer is contagious and worry about their own death. At age seven to 10, they may worry that they have caused the cancer by acting out or not cleaning their room, for example. At age 11 and up, they may fear the social stigma of the disease among their peers, who do not have sick parents.

Each child has a different temperament, she explains. Among clients she has seen: a 12-year-old boy who wants to be helpful at home, but inwardly suffers from depression and anxiety; his 15-year-old sister is angry that she has to work to pay for her horseback riding lessons, because her mother is too sick to work.

Both are normal reactions, and anger may even be better handled than extreme sadness, Gottlieb says. Children who become anxious and do not express their fears usually need more help.

Children may become obsessed with death or disease, she says. They might also have episodes of illness themselves, such as a headache or stomachache.

But there are ways for parents and families to try to stay intact while fighting cancer, she says.

Gottlieb suggests keeping the household set up as close to the same way it was running before the cancer struck. Sometimes parents loosen limits on children, letting them stay out longer or missing school, but children need the limits to feel secure, she says.

"I also recommend setting up calendars that show children's activities in the future," she says. "It gives them some sense of relief that their day-to-day life is assured."

As for participating as caregivers, children should be involved in the way that best suits the child. Teenagers who like to cook or shop might feel they are contributing to a parent's well-being by making a meal or picking up groceries. Children who like to hang out with mom might contribute by watching a video with her while she recovers from chemotherapy.

Parents can often help their children deal with cancer through children's books. Gottlieb, who has just finished writing a book on children and cancer titled "For the Love of Grace," has a list of books she often suggests.

"I try to offer parents and children all the tools," she says, "then let them select what they need."

Resources to Remember

In addition, the National Cancer Institute (NCI) publishes several free booklets on coping with cancer for families, including: "Taking Time: Support for People With Cancer and the People Who Care About Them," "When Someone in Your Family Has Cancer," and "Talking With Your Child About Cancer." Many publications are available in the USC/Norris Department of Social Services, or they may be requested through the NCI website at http://publications.nci.nih.gov or by phone at 1-800-4-CANCER (1-800-422-6237).

The Social Services Department also has a number of other videos, publications and support groups available. One of particular note is the Cancer Survival Toolbox, a set of audiotapes that teach cancer survivors the skills they need to help themselves in the healthcare environment. Now the Toolbox has created a new component called "Caring for the Caregiver" to address the growing needs of caregivers. The Toolbox is free and can be obtained by calling 1-877-TOOLS-4-U (1-877-866-5748) or visit the Web site at www.cansearch.org/programs/toolbox.htm

 

Helping Each Other   Techniques to help families cope with cancer include:   Seek support from family, friends, clergy, support groups and health professionals. Now is not the time to think you can do it all on your own. Share decision-making with your partner or other adult family members - and children when appropriate. Encourage family communication, questions and concerns. Listen to and value all feelings. Communicate about the illness with children in a way that is appropriate for their age. Talk about topics such as hospitalization, treatment and death. Children need information; this will help decrease their anxiety. Listen to children's concerns and address them. Maintain and create family time and routines. Try to maintain some constant patterns so the family feels it has some control over a chaotic process. Use problem-solving techniques. Identify and put into place specific courses of action to deal with problem areas in the family. Work to maintain emotional balance and flexibility. That may mean having and expressing strong or negative feelings, which are a part of the process of dealing with a cause of extreme stress, such as cancer.     Adapted from "Helpful Coping Techniques for Families," from Nancy Raymon's Southern California Breast Cancer Connection newsletter. Courtesy of USC/Norris Comprehensive Cancer Center and Hospital's Department of Social Services.

 

 

 

---

 

Back

Next

Index