Promising to love, honor, and cherish someone “in sickness and in health” is easy during the wedding vows, when it’s purely a hypothetical situation. But when cancer strikes, reality sets in.
Cancer doesn’t take up residence just in a woman’s body—it also infiltrates her home, family, relationships, and career. Every day thousands of women are diagnosed with cancer, and every day thousands of spouses and partners step into the role of caregiver.
Unfortunately, there is no script for this new role, and that can leave many partners feeling lost and frustrated. Cancer has struck one body but two hearts, and this leaves everyone in need of support.
Partnership, Family…and Cancer
“When something like this happens, you just dig down,” says Bill Held, an operations coordinator at Huntsman Cancer Institute in Salt Lake City, Utah. In October 2007 Bill’s wife, Bonnie, was diagnosed with metastatic liver cancer and told she had six to 18 months to live.
Eighteen months later, Bill says, “We’re living with cancer.” He paraphrases Charles Dickens, half-jokingly: “It has been the best of times and the worst of times.”
Bill and Bonnie both insist that they are very fortunate. Long-term disability insurance and Social Security have helped soften the financial blow of cancer treatment, they have a large support network of friends and family, and Bill’s work at the Huntsman Cancer Institute means they have access to valuable resources. Still, nothing prepares a family for a battle with cancer.
“You never think it’s going to happen to you,” Bill says. “My biggest fear was how I was going to juggle the kids and work if Bonnie didn’t feel well.”
Fortunately, Bill’s biggest fear did not come to pass. Though Bonnie had to give up her 18-year career as a hand therapist, she has continued to feel well enough to take their kids—Christopher, 8, and Stephanie, 12—to and from school and to help with homework. Together they have found a way to juggle responsibilities. Friends have pitched in with meals, and Bill has picked up laundry duty and nightly household clutter clearing.
But those are just the details, and there are larger issues at stake. Laundry and other chores can be delegated, but emotional support is typically the responsibility of partners and spouses. Most partners know they want to be there for their loved one, but they may not know exactly how to be there.
Emotional Support 101
There is no instruction manual for supporting a partner with cancer. Each situation is unique, and every cancer patient may need something different from her partner. There are some basic guidelines to caregiving, however, that can provide a framework to help partners effectively support a loved one.
Delisa Rapp, an oncology social worker at St. Luke’s Mountain States Tumor Institute in Boise, Idaho, says it’s important for partners to communicate, listen, and avoid trying to fix what’s wrong.
“Listening can be one of the most important things you do,” she says. “Don’t try to ‘fix it.’ The more you try, the more frustrated you will get, and then it’s difficult to support anyone.”
Delisa says that communication is critical. In addition to listening, it’s okay to share your own feelings and fears. “We tend to shut down in hopes that we will not hurt the other person’s feelings or worry them. This can actually hurt more than it helps,” she says. “Tell them how you feel, that you are scared, too. It can bring a sense of relief for you and reassure the patient.”
Bill agrees. He says that if he could offer one piece of advice to other men supporting wives with cancer, it would be to go to counseling. “You have to deal with it,” he says. “It’s very hard to have some of these conversations, but it really does help.” He says that both individual and couples counseling were helpful to him in learning to cope and communicate. The individual sessions provided him with an outlet for his own emotional turmoil, and the joint sessions helped open the door to conversations they needed to have but perhaps were afraid to initiate on their own.
Practical Support 101
In addition to providing emotional support, partners can play a valuable role in providing practical support both at home and in the doctor’s office.
“Men need to ask what they can do to help,” Bonnie says. “Sometimes it takes asking more than once because we’re not always sure what it is we need help with.”
Some women want an extra set of eyes and ears at their medical appointments, or they want their partners to tackle the daunting job of researching every aspect of their disease. Others want their partners to act as the family spokesperson, field phone calls, and shield them from intrusive (but well-meaning) friends. Many women simply want to be able to hand off household duties so that they can focus on receiving treatment and getting well.
Bonnie says that Bill took the initiative and started doing laundry, household chores, meals, and more. “If he hadn’t started to help with the meals and stuff, I don’t know what I would have done,” she says. “I have no real appetite, so trying to keep up with meals and kids would be really hard.”
In addition to helping out at home, Delisa says that partners can play a valuable role in gathering information and helping patients make informed decisions. “During this time it can be difficult to concentrate and exhausting to make decisions. Be there to gather information, weigh the pros and cons, be a sounding board, and help formulate questions.”
Your partner may have cancer, but you still have needs—and it’s important to take care of yourself.
“I’m taking care of myself because if I can’t take care of myself, I can’t take care of anyone else,” Bill says. For him this means attending yoga classes regularly, where he can breathe and find peace. This gives him the emotional and physical energy to cope with the reality of his wife’s terminal illness.
Delisa agrees: “Self-care is extremely important. There will be times when you feel like you just can’t do any more, listen anymore, or feel anything more. That’s when you know you have to take some time for yourself. There is no shame in this.” She suggests that partners make it a priority to stay active and get good nutrition and plenty of sleep. This will ensure that they are healthy enough to continue providing support.
Living with Cancer
Though it seems counterintuitive, it can’t be all cancer all the time. Even in the face of a life-threatening illness, it’s still important for couples to continue to be couples. “There is a fine line between spouse and caregiver,” Delisa says. “Too often we focus only on being a caregiver. It’s important to be a little bit of both. Your partner may need someone to care for them, but they also need the safety of the relationship that existed prior to diagnosis.”
Bill and Bonnie seemed to instinctively understand this. They have tried to keep life as normal as possible. They have maintained their date night—every Tuesday night a friend babysits for them so that they can attend yoga class and then go out to dinner together.
After she was diagnosed, Bonnie told Bill, “Even though I have a terminal illness, as far as the kids are concerned we need to keep to a routine.” This means the bedtime, homework, and household routines have remained unchanged in an effort to maintain stability for the kids.
“Yes, it’s stressful,” says Bill. “It’s hard on Bonnie, on me, and on the kids, but we have come closer together as a family. We’ve had a wonderful year and a half. I wouldn’t change it for anything.”
Tips for Caregivers
If your spouse or partner has cancer, here are some important things to remember:
- Stay on top of your self-care. If you don’t take care of yourself, you can’t take care of anyone else.
- Continue to be a spouse or partner, not just a caregiver.
- Gather information and help with decisions.
- Communicate. This means talking and listening.
- Maintain support beyond treatment—your partner may face new challenges post-treatment.
Men Against Breast Cancer
Need support for your support? Check out the Partners in Survival workshops facilitated by Men Against Breast Cancer (MABC). The workshops focus on a problem-solving intervention called COPE, which is an acronym for creativity, optimism, planning, and expert information.
According to Marc Heyison, president and co-founder of MABC, the interactive workshops give men a blueprint for supporting a spouse through cancer: “It helps give them control of an uncontrollable situation.
“Men are amazing caregivers,” Heyison says. “They want to help. They can’t fix it and they can’t switch places with her, but they can be there for her.”
Thus far the workshops have been offered in 36 states and Canada and have helped more than 600 men learn new tools for effective caregiving. For more information visit www.menagainstbreastcancer.org