Read an Excerpt
Couples Confronting Cancer
Keeping Your Relationship Strong
By Joy L. Fincannon, Katherine V. Bruss
American Cancer SocietyCopyright © 2003 American Cancer Society
All rights reserved.
Cancer's Impact on the Couple: An Overview
The stories in the Introduction show the dramatic effect that cancer can have on couples. In this chapter, we'll look at more specific details about how cancer affects both people within a relationship, as well as how different coping styles and cultural backgrounds can affect relationships during stressful times. We explore the psychological impact of cancer by looking at what we know through our experience working with couples, and through research findings. Many of these findings have come from the growing field of "psycho-oncology," or the psychology of cancer.
How Both People Are Affected Throughout the Process
As you undoubtedly realize by now, cancer happens to the couple, not just to the individual. While you and your partner will each react to and cope with the experience of cancer in unique ways, both of you will be affected by it.
Patients and their partners often react to the diagnosis of cancer with feelings of shock and disappointment, even betrayal. Each member of the couple adjusts priorities to make room for the new, unwanted reality of cancer and its treatment.
Naturally, your reaction to the diagnosis will depend upon the specific medical information you are given. You may feel like you are on an emotional roller coaster as information is revealed concerning the type of cancer, its stage of progression, and the likelihood of a good response to treatment. No matter how hopeful the outlook, it is natural for you and your partner to have fears about what cancer will bring. Despite medical advances in the treatment of cancer, people diagnosed with cancer are forced to consider the possibility of long-term illness, death, and other effects of cancer. One psychiatrist who works with cancer patients, Lynna Lesko, M.D., Ph.D., has described the most common fears as "the six Ds:"
At this point in the process, you probably have strong feelings about the impact cancer may have on both yourself and your partner. Patients typically feel badly for themselves as well as for their partners who are forced to go through this. Healthy partners or spouses feel sad that their loved ones will be going through such a tough experience, and also may feel bereft at the thought of possibly losing their partner and certainly enduring a major disruption in their once peaceful shared life as a couple.
Following on the heels of those feelings are waves of guilt about having "selfish" thoughts that are often experienced by both patients and their partners. The healthy partner — or even the patient — may feel it is wrong to have self-focused concerns. Both partners may blame themselves for the cancer, thinking, "I should have taken better care of myself" or — on the other side of the coin — "I should have taken better care of my partner." It's hard to say which is more difficult — blaming yourself or feeling helpless. Both can be tough and painful.
In addition to the diagnosis and the anxiety it brings, there are a lot of other unwanted hurdles. Both partners may worry about how to tell other family members or children. Immediately following the diagnosis, couples must think about their financial and work situations and how to manage the crisis. Either partner may simply feel angry about having to go through cancer (we'll talk more about dealing with anger in Chapter 5).
After the diagnosis, there are a lot of decisions to be made. Who will offer a second opinion or treat the person diagnosed with cancer? What type of treatment should he or she receive? How will we handle the treatment schedule? Do we need genetic counseling if genetic inheritance for the disease is suspected? Are there any complementary treatments to consider? It can seem nearly impossible to make all of these decisions calmly and cooperatively as a couple just when you are feeling on edge from the stress of the diagnosis.
During the treatment phase, the particular challenges you will face depend on the specific treatment process, its length, and anticipated side effects. Few side effects impact couples more than fatigue, which is one of the most common side effects of cancer treatment. Every aspect of a couple's life is affected by how much energy the person with cancer has to cope with household tasks. If the person with cancer has minimal energy, the healthy partner will need to pick up the slack. When the healthy partner is doing more to help out at home, there can be a "ripple effect" throughout the family and even with coworkers at the office, as older children and coworkers may scramble to relieve some of the burden for the healthy partner. In the first couple described in the Introduction, Alicia picked up all the slack for Keith, who was both depressed and physically less able to do daily household maintenance. As a result, Alicia felt frustrated, angry, and guilty.
Just as in the diagnosis phase, the treatment phase may bring many ups and downs, and even small crises. These include things like an unexpected hospitalization, an unusual and troublesome side effect of treatment, or an unexpected finding on a scan. Each hurdle requires cooperative problem solving and mutual support between you and your partner.
These stresses often challenge even a strong relationship. Fred and Bonnie (the second couple described in the Introduction) had several of these "bumps in the road" to contend with throughout Bonnie's treatment. Unlike younger couples, Fred and Bonnie had more than thirty years of experience dealing with life's "curve balls" together before Bonnie's diagnosis with cancer. So when Fred got terribly upset and nervous in the face of an unexpected hospitalization, Bonnie knew from years of experience how to deal with his distress. She allowed him to express his feelings, and then (when the timing was right) would gently ask him to try to relax. This worked for them as it had so many times before.
What works for you and your partner will depend on your personalities and how each of you tends to cope with stress and strong feelings. It is probably helpful to assume that you and your partner differ in your preferred ways of coping. One of you may express feelings loudly, while the other may be silent or withdrawn. We will talk more about understanding differences in coping later in this chapter. Specifically, we will talk about how your coping styles may be influenced by role changes, as well as by your ethnic and family background, and how the differences in your backgrounds may impact your efforts to understand and support each other.
Even after treatment, cancer does not vanish from couples' lives. Often, the world feels less predictable after the unsettling experience of cancer, and there is the threat of a relapse or recurrence. Some people respond to this threat by making more time for each other and for other family members. Although making time to be close is a positive way to cope, it is also natural not to feel altogether positive about having experienced cancer. Some people who have had cancer and their partners feel consumed with fear that lightning will strike twice. Couples sometimes have a hard time feeling comfortable planning for a long-term future.
Still, other couples are ultimately able to come out the other side of the fear and anger, and their relationships can actually grow through the struggle. This was the case for Yvonne and Bob (the third couple in the Introduction), who were able to move beyond their experience with cancer. Even though the outcome was not very hopeful, both partners were able to evaluate themselves and find more meaning in their lives. Sharing that meaning was very special to them both. For example, Yvonne always had a concrete and practical approach to life. But with Bob's cancer, she realized there were many events beyond her control. She began to feel the presence of something inside her that gave her strength and support. She sensed that this came from somewhere else and was not just her own inner reserves. With that realization and further spiritual exploration, Yvonne found a coping skill that served her well in other areas of her life.
The Healthy Partner or Caregiver
What does the healthy partner or caregiver feel when a loved one has cancer? What does he or she think about? In research studies, spouses of people with cancer have reported feelings of loss of control, uncertainty, and helplessness. In group therapy, the partners of people with cancer tend to bring up certain issues again and again. These recurring themes include:
Providing physical care
Dealing with fear, emotional pain, loneliness, and suffering
Feelings of inadequacy as the caregiver
Difficulty with showing emotions or being close
Different cultural and religious practices
Having young children who need attention
Personal family issues or family history
Guilt about having good health
Resentment of the ill partner's demands
Boredom with a long illness or treatment process
How to say goodbye to each other and family members
Overall, the stresses involved in caregiving are similar for men and women. Research suggests that for both genders, the caregiver (the spouse or partner who is not ill) may actually feel more upset about the cancer than the partner who is ill with cancer. For example, studies of breast cancer's effect on couples suggest that a breast cancer diagnosis may be just as upsetting to the partner as it is to the patient.
Some studies suggest there may be some gender differences in the experiences of caregivers. For example, one study found that wives actually coped better with having a terminal illness than their husbands. Another study reported that men who were caregivers derived more satisfaction from the experience of caring for a spouse than did female caregivers. There is also some evidence from research that men may be more likely than women to withdraw from others when a spouse is diagnosed with cancer, and may be less comfortable receiving help from others.
However, we should not jump to making generalizations or stereotypes based on a small number of research studies. A false stereotype about men is that they need less support than women, or that men are stoic and "in charge" of things — this is not true! When a caregiver refuses support, it may not be due to a lack of caring, but to feeling uncomfortable. When asked about their experiences, most men with partners who have cancer will readily describe being deeply distressed by their partners' illness.
A similar stereotype may be held about women in that they may be perceived as "natural caregivers" who don't need help themselves. This is well described by cancer researcher Laurel Northouse, R.N., Ph.D., who noted, "Nobody brings casseroles to women when their husbands are sick because people assume a woman can do the caretaking. But women need help, too." When compared with men, research suggests that some women may be more likely to complain of physical symptoms — such as back and neck pain, or headaches — in response to the stress of having a partner with cancer. Whether they occur in men or women, these kinds of physical complaints may be a sign of tension that needs to be addressed.
What helps partners cope with the stress of an ill loved one? There is evidence from research studies that people cope better with stress when they have or find supportive people in their lives. For example, some research suggests that married people, on average, adjust better to the stress of a chronic illness than single people. There is some evidence that married people have somewhat better physical and emotional health than single people. Based on these findings, improving the quality of close relationships is worthwhile for all of us, especially during stressful times such as coping with cancer.
Strong family bonds can help buffer emotional distress. We saw this in the case of Yvonne and Bob who remained close throughout Bob's illness and treatment. The support he received from Yvonne made the experience more bearable. Even though he suffered through several hospitalizations, he knew he could rely on Yvonne to be there through "thick and thin."
In the next chapter, we'll explore in more detail how caregivers can cope with partner's cancer diagnosis and treatment and how you can help your partner and your family get through the experience of cancer.
In addition to the psychological costs of an illness like cancer, there are significant financial losses. As many as one-fourth of primary caregivers give up or lose their jobs, and approximately one-third of all families lose all of their savings or their major source of income. The recent trend of patients leaving the hospital to go home sooner increases both financial and caregiving demands on both members of a couple. Even those caregivers who continue working may have a loss of income due to absences from work or changing to a lower-paying job.
When a caregiver is forced to give up a job to care for a partner at home, more than just income is lost. He or she also gives up career mobility, advancement potential, and the support network of coworkers and friends. Sometimes going to work can be a relief to a burdened caregiver who needs a diversion from the stress of his or her partner's illness. Because caregivers are immersed in taking care of their ill partners (and children, in many cases), they may become isolated from their friends and other supportive people and enjoyable activities. Even if the healthy partner has the time and energy for a social life, he or she may feel it is inappropriate to have a social life without his or her ill partner being part of it.
Understanding What Your Is Experiencing
Much more has been researched and written about cancer patients than their partners, so in this book, we emphasize the less frequently discussed topic of cancer's impact on the healthy partner. Nonetheless, it is important to provide an understanding of what the partner with cancer is experiencing. Later, we will discuss the psychological effect of having specific types of cancer.
So what is it like to go through cancer? Typically, the initial reaction to the diagnosis is shock, followed by a period of strong emotions, which often include despair, fear, anger, sadness, and guilt. Deciding between the treatment options can be difficult and confusing. Simply learning about all of the treatment options with a new diagnosis of cancer can be overwhelming, and it is daunting to think about undertaking a treatment with potentially unpleasant or even life-threatening side effects. Cancer patients and their partners must break the news of the cancer to the family. It can be confusing to figure out how to present the information to children of differing ages. Some time following the diagnosis patients often begin to confront the possibility of their own mortality. Coming to grips with the possibility of dying takes time, emotional energy, and reflection.
Patients have to adjust to the physical and lifestyle changes brought on by their cancer treatments. Depending on the treatment and patients' responses, hair loss, fatigue, nausea, weight loss, and changes in sexual desire or functioning are some of the potential obstacles faced by patients and families. Changes in household members' roles are often required to allow patients to focus on their treatment regimen.
Even after cancer has been successfully treated, survivors often think about and fear recurrence. Some spouses and loved ones no longer see cancer as a threat, so they may not be prepared for the survivor to stay focused on cancer after treatment is successful. The person with cancer sees life differently after the experience, no longer feeling "immune" to serious illness. In other ways, too, the person with cancer may have a changed outlook or philosophy. This can be difficult for loved ones, who often expect the survivor to be their "usual self." The pain these changes can cause in relationships is one of the major focuses of this book. It offers couples information to better understand what is happening to them psychologically during and after the physical confrontation with cancer.
Specific Cancers and Their Psychological Impact on Couples
While we can make some general statements about cancer and its impact on couples, each type of cancer may involve special challenges. We have devoted the next section to the unique problems involved with each type of cancer. Although we will discuss many possible cancer symptoms and treatment side effects, not all of these will apply to your situation. Your doctor can provide you with the most accurate and specific information about what symptoms, response to treatment, and side effects you may expect. We will discuss all of the many possible complications and problems because they give an idea of the stresses that couples may face when confronting each type of cancer.
Excerpted from Couples Confronting Cancer by Joy L. Fincannon, Katherine V. Bruss. Copyright © 2003 American Cancer Society. Excerpted by permission of American Cancer Society.
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