In Sickness and In Health: When a Spouse Has Cancer

When Terry Hammink, a social worker from Minneapolis, learned 4 years ago that his wife Pat had breast cancer, he couldn't believe it. Pat had a couple of breast cancer scares in the past, but the test results always came back benign. Hammink thought that this time she would continue to be fine, but she wasn't.

"This wasn't the way it was supposed to be," said Hammink. "I realized that I had been complacent and thought that everything was always going to be just as we'd hoped it would be, just as we'd prayed it would be."

When you or your partner is diagnosed with cancer, it can feel as if your world has been turned upside down.

"There's a seismic shift in your inner emotional life, and in the emotional life of the individual as part of a couple," said Les Gallo-Silver, ACSW, senior social worker at a large northeastern medical center and a member of the Association of Oncology Social Work.

Cancer changes everything, and, many times, these changes can bring fear. When you or your partner has cancer, it's natural to be afraid of many things surrounding the cancer, such as medical bills, treatment options, side effects of treatment, and death. One important way to help overcome this fear is to talk about it.

"Talk to one another and communicate as much as possible and as well as possible," said Harriet Mannheim, CSW, program director of Gilda's Club, New York City. Gilda's Club is a support service with locations across the United States for people with cancer and their loved ones. The comedian Gilda Radner, who died from ovarian cancer in 1989, inspired Gilda's Club.

"Everyone is afraid, both the person with cancer as well as his or her loved one," Mannheim said. "A lot of times, there's what we call the 'pink elephant,' where no one's talking about what they're really afraid of. What happens is that it creates a more stressful situation. The two people who should be the best allies become concerned and find it difficult to communicate."

Stress and Cancer

When you or your partner has cancer, stress inevitably becomes part of your life. Studies show that well partners can suffer the same amount of stress as ill partners. Laurel Northouse, RN, PhD, and the Mary Lou Willard French Professor of Nursing at the University of Michigan, has studied the effects of cancer on couples for almost 20 years. She said, "We've done a lot of studies with breast cancer, colon cancer, and prostate cancer. Generally, the partner reports as much emotional distress as the patient." Northouse added that the emotional distress is more equal between couples when the cancer is advanced.

"The partner is not insulated from the cancer experience," she said. "The partner is very central to helping the patient through it. And, as a result, [the partner] gets these reverberating effects, [like] the stone in the pond. It usually reverberates closest to the partner because he or she is the one helping them through."

"All well partners are at a total loss, fearful of doing the wrong thing, fearful that their partner who is ill will do the wrong thing, and some irreparable damage, some terrible thing, will happen," said Gallo-Silver. "Well partners live with tremendous anxiety about what's the right thing to do and when to do it."

Help for Caregivers

Adding to this stress are the many new roles that the well partner may have to take on. For example, the well partner may need to go back to work, or care for the home and children while the ill partner is in the hospital. The well partner may start to crave "normalcy," such as a day at the beach or a family dinner. In addition, many well partners become caregivers to their ill partners. Northouse feels that during treatment of the ill partner, health professionals need to remember to also offer support to the caregiving well partner.

"We need to help both people," she stressed. "Health professionals too often assume that families are the natural support, and as the natural support, they naturally know what to do. It's a situation where, when you get an illness like cancer that has a lot of life-threatening ramifications to it, families don't always know what to do. They could use a little guidance, so they feel more confident in their ability to help the patient."

Northouse also warned about caregivers becoming burned out. "We need to start figuring out ways to help the family. Things aren't going to reverse themselves. We're not going to start keeping the patient in the hospital any longer. The trend [of homecare] is going to continue and we're going to find that caregivers are going to get burned out, and then they will have their own health problems. [These problems] are going to feed into the cost of health care unless we find supportive programs for caregivers," she said.

What to Do

If you are feeling overwhelmed by your emotions and by the additional duties you've taken on, get help. It may mean asking a relative to baby-sit or suggesting that the whole family goes to counseling. Here are some other ways to cope.

Stay Well. When you're taking care of someone else, it can be easy to forget to take care of yourself. For example, a recent study showed that many caregivers of people with cancer have sleeping problems, which can lead to depression.¹ As the well partner, try to eat well, get enough sleep, and exercise regularly. All of these activities will help you reduce stress. If you feel that you need emotional support, try going to counseling or joining a support group.

Northouse encouraged well partners to ask for help. Her research shows that many times, people don't mobilize for well partners because they think that the well partner is the natural caregiver. "Well partners need to identify a support system for themselves. It will help them weather the stress of the illness," said Northouse. She added that a new study she's working on has the patient and the partner working as a team. "We're doing an intervention study right now with couples facing prostate cancer. One of the goals of our program is to help them work as a team to get through the illness experience. What it means is that it's not just the well partner giving the patient support, the patient also gives the well partner support. Each person affects the other. That's what we've found in our research as well."

"Get help for yourself," stressed Gallo-Silver. "Talk to someone. Talk to a social worker. Talk to a chaplain. Talk to a person who is knowledgeable and can counsel you, to help you think it through."

Be Informed. When your partner is diagnosed with cancer, it's important to learn all you can about your partner's condition and treatment. That way, you can better understand what your partner is going through.

"You need to do a lot of reading," said Gallo-Silver. "That self-education process helps you understand what the doctor is saying, so that you can understand the test reports and the treatment decisions, without altering your partner's ability to make decisions."

Be Supportive. If you can, take time off from work to go with your partner to medical appointments. Terry Hammink recalled that his wife recently thanked him for doing that when she was first diagnosed.

"I just sensed that that was the right thing to do, and just got off work and went to all those appointments with her," he said. "She wasn't saying that I needed to, but I did. It also gave us a chance to talk, even as we were in waiting rooms and going to the appointments. That way, I had a chance to hear the same things that she was hearing, so she didn't have to repeat everything to me. She's told me that that was very important, and it was very important to me too."

Just Do It. Gallo-Silver stressed the importance of non-verbal communication, and added that sometimes actions do speak louder than words.

"I think that sometimes well partners lean a little too much on verbal communication to demonstrate their willingness to help and their willingness to share and their ability to get involved," said Gallo-Silver. "You have to focus a little more on nonverbal communication because there is so much anxiety. And when a couple is experiencing so much mutual anxiety, I think that nonverbal communication is much more powerful. Don't ask; do. Don't ask your partner with cancer, 'Do you want me to go to the doctor with you?' Just go!"

Cancer and the Relationship

During this trying time, many couples' relationships are tested. Hammink and his wife had just celebrated 30 years of a good marriage when Pat was diagnosed. Hammink felt that their relationship was strong before, and, that after the cancer diagnosis, it went to a different level. He also credited their strong Christian faith with helping them.

"We talk about our faith more to each other than we did before," he said. "We talk about serious things more than we did."

In Mannheim's experience as a social worker, she found that, "cancer either brings a family together or it pulls them apart. It can certainly strengthen a family. You'd be amazed at how families come together for each other and try to work out issues and advocate for each other."

Gallo-Silver has also seen cancer become "an emotional wake-up call for people." "If you have a strong relationship, and cancer enters your life," he said, "that relationship is really going to get kicked around a lot. When you love your partner, cancer entering your lives and surviving as a couple will make you far more appreciative of the love you already have."

When asked if a weak relationship before a cancer diagnosis could worsen, Gallo-Silver said, "There are people who have relationships that are, unfortunately, weak and damaged. Cancer most certainly does not make those relationships better." However, he added, "Sometimes relationships surprise the participants because there are hidden strengths that just didn't need to be used before."

In Northouse's research, she has not found that a cancer diagnosis increases a couple's chances of divorce. "We're just not seeing it," she said. "But what we do find is that couples report a greater appreciation for each other, they tend to try to slow down in life, and do more things that are important to them as a couple."

Unexpected ways to show appreciation for your ill partner can also help a relationship. "Leave a little note of support with your loved one's medicine," Gallo-Silver said. "Show up at the doctor's office even when he or she didn't expect you. On a day when the person you love is feeling pretty good, take off from work to do something normal and fun that doesn't involved doctors or emergency rooms. That's how you support. That's what really keeps people alive. What's the point of suffering with cancer? One important reason is to be alive to share with other people."

Special Concerns for Gay and Lesbian Couples

Gay and lesbian partners face many of the same concerns that heterosexual face when one partner has cancer. However, sometimes prejudices about the couple's relationship, by family members or health professionals, can make a difficult time even more difficult.

Northouse has not researched homosexual couples. However, she said that gay partners do struggle with being seen as a legitimate partner of the patient. "Partners are sometimes not seen as the legitimate partner by health professionals," she said. "They're seen as that, oh, other person. They are as legitimate a partner as any heterosexual partner might be. I think they [gay couples] might not be included as much in conferences [between the patient and health professionals]. They may feel some lack of inclusion as a legitimate partner."

Gallo-Silver said, "In its most narrow sense, our culture sees [homosexual] relationships as purely sexual." If there's an illness, family and friends who do not support the lifestyle, often don't see a "real" relationship. They may expect that the relationship is over and the partner is no longer an important figure. "This denies the emotional aspect of the relationship," he said.

"Unfortunately, medical, health care, and mental health professionals still have tremendous ambivalence about gay couples and lesbian couples," Gallo-Silver added. "They struggle with what the meaning of that type of couple is and how to involve the partner, when, basically, it really shouldn't be an issue. A patient decides who's an important person for the health care team to relate to and share with, and that should be just good enough, regardless of what they call that relationship," he said.

Gallo-Silver went on to say that many major cities have psychosocial programs for gay couples, but not enough.

"I think it is necessary for my profession and other professions always to make sure that whatever programs they are developing have a place for gay and lesbian couples. I'm not at all advocating dividing services. However, if you're going to be doing a partner's group for partners of people with prostate cancer, you really shouldn't expect that only women are going to attend. Or, if you're going to do a partner's group for women with breast cancer, you really shouldn't anticipate, and plan, and develop it as if only men will attend. I think this is work that still needs to be done," he said.

For more information on cancer, health, and wellness for gays and lesbians, visit these web sites. The Mautner Project for Lesbians With Cancer (www.mautnerproject.org) provides cancer services and support for lesbians, their partners, and their families. While gay men do not have a similar resource, GayHealth.com has a section on cancer. Visit the site at www.gayhealth.com. You will find the "Cancer" section under the "General Health" page.