Staying the Course, Going the Distance

medical_frontiersA cancer diagnosis can mean many changes for the person affected and for his or her caregiver. Family members and friends can ease the burden, and a variety of resources are available to help.

One in two American men and one in three American women are likely to develop cancer in their lifetime, according to the American Cancer Society. The sheer number of people with cancer is also expected to rise. Cancer is mainly a disease of aging-nearly 80 percent of all cancers are diagnosed at age 55 or older-so as the U.S. population ages, and as people live longer, the number of those with cancer is expected to rise.

“To be either a cancer patient or a caregiver will likely become an even more common experience,” says Pat Schmitt, program director of JamesCare for Life at The Ohio State University Arthur G. James Cancer Hospital and Richard J. Solove Research.

“Facing cancer with a loved one can be an extremely challenging experience, but it can also be a life-transforming event. What most people want to know is how to stay the course and go the distance.”

The goal is take the challenges posed by cancer, and integrate them into one’s own life.

Sifting Through Options

“Cancer doesn’t just happen to the patient; it’s truly a family illness,” says Diane Blum, Executive Director of Cancer Care in New York City, a national non-profit organization that provides free counseling, education and referrals. “It affects you emotionally, financially and socially.” Unlike a broken leg, or even heart surgery, which may involve a few weeks or months of recuperation and then life returns to normal, cancer is a disease that can keep on giving.

“When someone is newly diagnosed, the initial reaction is shock,” Schmitt says. “Many decisions must be made, including which treatments to opt for and whether to participate in clinical trials.”

The person’s treatment might involve surgery or chemotherapy or radiation, or a combination these, says Schmitt. “There will be questions about the duration and frequency of treatments and the side effects. These not only affect the patient’s life, they affect the caregivers as well.”

Then there are money and insurance questions – how to finance the care and still stay afloat. “Having money doesn’t keep you from getting cancer, but it does allow for more choices,” Blum says. People with limited resources and little or no health insurance may feel constrained and restricted to a certain doctor, hospital or treatment that is within their budget or covered by their plan.

“Finances often dictate where patients end up and what kind of care they get,” adds Chris Rhoades, MD, assistant professor of clinical internal medicine at the Arthur G. James Cancer Hospital at Ohio State. “The diagnosis is often more advanced in African-Americans,” he says, due to their socioeconomic status and a lack of resources that allow for early detection.

And there are practical concerns. For example, who will take the person for treatment? Does the person have adequate sick time? Can the caregiver adjust his or her work schedule? Who will carry out the routine tasks-cooking, cleaning, running errands, bill paying-previously handled by the person undergoing care?

To complicate matters, the health-care system continues to place greater emphasis on outpatient care, according to People Living With Cancer (PLWC), a Web site sponsored by the American Society of Clinical Oncology (ASCO). Caregivers are expected to do more in the home, with family members performing tasks previously done by health-care professionals.

“Family members often ask themselves, ‘Do I have what it takes? Am I doing the right thing? I’m not a doctor or nurse, and I don’t want to hurt my loved one,'” Schmitt says. “There’s a level of competence and self-confidence that must develop.”

New caregivers might feel that they should be independent and self-sufficient. “Family members tend to tell others that they’re fine, when they’re really not, especially at first,” says Susan Scritchfield, coordinator for Consumer Health Education at The James Cancer Hospital. “We’re trained to be self-sufficient when in fact we really do need help.”

Family members may fall into the trap of trying to accomplish everything. “There’s so much to do, so many responsibilities,” says Dominick Bonanno, program coordinator at Cancer Care, in a telephone education workshop sponsored by the National Center for Complementary and Alternative Medicine at the National Institutes of Health and ASCO. Family members who stop caring for themselves are prone to “exhaustion and depression and may feel under so much pressure that they burn out,” he says.

One Step at a Time

An effective way to cope with a diagnosis of cancer, experts agree, is to take each decision one step at a time. Family members can help the ill person deal with a system that, says Scritchfield, “speaks a whole new language.” Along with raising questions the patient hasn’t thought of, family members can help gather and assess information, suggest alternatives for second opinions and serve as liaison between the person with cancer and the health-care team.

“Each family has its own way of dealing with things,” says Scritchfield. “Some work better as individuals, while others make group decisions. But broadening the base of help and support is essential, both in the initial phase and down the road.” In other words, it’s best to not do this alone.

Families can also help with decisions related to clinical trials. “People are either worried about an experimental drug’s side effects or don’t understand how trials are done, or they know that although there are no guarantees, the new treatment may help them,” says Cheryl Kefauver, a clinical research nurse at the OSU CCC-James. “Even though it’s ultimately the patient’s decision, I try to involve families as much as possible.” With the knowledge and support of the family, a person may feel more comfortable about joining a clinical trial.

Families should also discuss questions of insurance and money. “One of the biggest concerns, especially with married couples, is ‘Am I going to leave the other person in debt?'” Kefauver says. “The James Cancer Hospital has an entire department that deals with financial issues. When a patient is on a clinical trial, they make sure that patients are billed only for care not covered by the trial.” Tests and treatments related to the clinical trial are generally paid for by the study itself and are not the responsibility of the patient.

Even if family members cannot contribute financially, they can help investigate options for care. Organizations such as the Division of Consumer Affairs at the Ohio Department of Insurance, the Columbus Cancer Clinic and the American Cancer Society can guide families through the confusing maze of pre-approval requirements and other procedures. Patients can also request that their insurance company assign a case manager to help them deal with questions about benefits, home care and other options.

There are also alternatives for the uninsured: “You can work directly with the hospital and the clinic,” Blum says, to set up arrangements for treatments and a feasible payment plan. In certain instances, pharmaceutical companies provide drugs at greatly reduced cost for compassionate use.

Caregiving 101

With treatment and financial decisions made, day-to-day demands come forward. Patients must be taken to therapy and gotten home again; drugs must be administered and symptoms monitored. Caregivers may need to make time for training in certain home-care procedures. According to Bonanno, the average caregiver spends about 20 hours a week aiding the ill person, often in addition to a full-time job and doing the cooking and laundry.

The American Cancer Society notes that 63 percent of people with cancer are alive five years after diagnosis. Many of these are disease free and perhaps even cured; others are in remission or undergoing treatment. For those with advanced cancer, the care setting can shift from home, to a hospital, to a nursing home, to a hospice. But no matter the setting, says Bonanno, “caregivers remain caregivers.” Even with health-care staff available, caregivers continue to serve as advocates and to provide support for their loved one.

“”Despite all this,” Schmitt says, “people can return to their lives and settle into a normal routine. It may be different from the ‘old’ normal routine, but it will enable a couple or family to live day-to-day with the comfort that comes from some measure of predictability.”

Employed caregivers can begin integrating these changes into their life and developing a routine by taking advantage of the Family and Medical Leave Act. This law requires companies with 50 or more workers to provide up to twelve weeks of unpaid, job-protected leave to care for a seriously ill family member. Employee benefits are continued, and employers can allow an intermittent or reduced work schedule and can extend the leave.

Adjusting to cancer can also test family relationships. “Some families are great in responding during a time of need, while in others, there’s a lack,” Rhoades says. For example, an elderly patient who lives alone may have more difficulty than someone with a spouse, children and siblings. Members of some families are geographically far-flung. “Cancer can unify or divide a family,” Rhoades says, with the latter commonly occurring when one member-who usually lives the closest-becoming the primary caregiver.

According to PLWC, a cancer diagnosis often shifts family dynamics. The caregiver may have to shoulder additional jobs, such as house and yard work and juggle finances. If the patient can no longer work, the spouse may need to find a job. Add in caregiving, and the spouse or other family member may feel besieged. At the same time, the person with cancer can feel guilty for being a “burden” and frustrated by his or her dependence on others.

“A husband can see his wife suffering and may ask, ‘Why her and not me?'” Schmitt says. He may develop survivor’s guilt and compensate by being overprotective. He may even fail to include the patient in treatment decisions.

Getting Off on the Right Foot

Caregivers can take steps to offset such pressures. They can begin by restoring a semblance of their former lives. They can plan for the necessity of taking time for themselves, then use that time to do things they enjoy without guilt. “Don’t be afraid to ask for help,” Scritchfield says. Accept offers that come from extended family, friends, neighbors and members of one’s church, mosque, or synagogue. Something as simple as cooking a meal, driving once a week to a treatment, or spending time with the person while the caregiver goes shopping or to a movie greatly eases the chance of burnout.

“Caregivers tend to fall into the trap of being superhuman,” Schmitt says. “They become isolated and put their lives on hold. Caregivers need time away from the cancer.”

Burnout’s warning signs include exhaustion, sleeplessness, irritability, forgetfulness, withdrawal from friends and leisure activities. Their own health may decline. To avoid burnout, Schmitt recommends stress-reduction activities such as meditation, exercise, eating well and getting adequate sleep.

“The loved one with cancer might also desire some time to themselves and encourage the caregiver to keep in their normal routines as much as possible.

Caregivers should discuss feelings, problems and possible solutions with family. “There needs to be an open dialogue,” Rhoades says. Family members should come to a consensus about treatment and the division of responsibility for caregiving needs.

Couples often experience changes in their relationship. “If something’s not quite right between them, or if there’s an unresolved issue, cancer can bring the problem to the forefront,” Rhoades says. “I’ve seen seemingly happily married couples split following a diagnosis.” On the other hand, he says, “It’s resulted in the reconciliation of divorced people, who come to see things in a completely different light.”

Sexual adjustments may be needed, as well. “Most treatments take away desire, possibly for months or more,” Rhoades says. “Partners need to be able to adapt and honestly communicate their needs and concerns with each other.” He recommends counseling and patience: “The person had a brush with death and may never be the same.”

The person will also have his or her own way of dealing with cancer and may be reluctant to share feelings. “Loved ones need to be open-minded and really listen to what the person is saying,” Scritchfield says. “It takes time for the person to adjust. You can say: ‘Something sounds different with you and I care about you, so do you want to talk about this?'”

The process can extend over years. If the cancer recurs, decisions may be required for additional treatment, possibly through a clinical trial, possibly for palliative or end-of-life care. Again, the one-day-at-a-time approach is best: “It’s a roller-coaster ride,” says Bonanno. “One week the patient’s struggling in the hospital, the next he or she is doing well. Any reduction in stress, however small, can reduce a sense of helplessness.”

A Journey of Healing and Growth

Hard as it may be to believe, “there is a silver lining,” Schmitt says. “Caregivers are sharing a healing journey through a challenging life event and recognizing strengths they thought they never had. There’s a special kind of intimacy that develops during this vulnerable period.” Helping a loved one cope with cancer can renew a caregiver’s appreciation for their loved one and add value to their time together. “The things they postponed, they start doing,” Schmitt says.

Along with a sense of personal growth, many caregivers become more aware of their own health. “Family members may come in for a consultation with a genetic counselor to learn more about their own cancer risk,” says Ilene Comeras, a research nurse in cancer genetics at The James Cancer Hospital. “We do a complete family history to see if they are at an increased risk for cancer or have a hereditary pattern of cancer.” Actual genetic testing may or may not be recommended, depending upon their family history. Also, she says, “there are options for cancer prevention for those who’d rather not be tested.”

Without doubt, coping with cancer is a challenge. But the challenge is not insurmountable, no one need face it alone. There are many resources that can help (begin with those listed in the sidebar). And one should never give up hope. “People with cancer are living longer, better, more comfortable lives,” Schmitt says. “Family and friends can provide education and support and add immeasurably to the quality of life for both the caregiver and the person with cancer.”

Leave a reply