Role Reversal: When Husbands Become Cancer Caregivers

MARC SILVER didn't know what to say or do to support his wife, MARSHA SILVER, after she was diagnosed with cancer. - PHOTO BY RACHAEL BOER PHOTOGRAPHY

All young couples inevitably experience a rough patch or two in their relationships, but for high school sweethearts Lucas D’Onofrio and Tamara Bruzzo, that obstacle was more of a minefield. When Bruzzo began experiencing chest pain just before Valentine’s Day, she went to a local emergency room for an X-ray and CT scan. D’Onofrio had bought tickets for a romantic dinner and a movie, but when the tests showed a suspicious mass, the couple spent the holiday in the hospital, instead.

When the news finally came — on D’Onofrio’s birthday — that his girlfriend had non-Hodgkin lymphoma, it was like he’d been hit by a sledgehammer. “It was a huge shocker for me; soul-crushing, really,” he recalls. “My mind just totally froze. I didn’t know how to react.”

That’s not uncommon, says Gary Patton, an oncology counselor at St. Mary’s Regional Cancer Center in Huntington, West Virginia. “Sometimes I’ve seen men, as a result of illness in themselves or a loved one, go into a sort of suspended animation,” he notes. “They don’t know what to do, so they do nothing. And that can cause a whole set of problems by itself.”

Ultimately, men whose partners are diagnosed with cancer may find they need to shift their outlook and develop a new set of skills in order to be good supporters and caregivers, both to their loved ones and to themselves.

NO ROADMAP

With no experience dealing with a life change as daunting as a cancer diagnosis, a man’s first response is often the wrong one. Marc Silver, author of the book Breast Cancer Husband, was at work when his wife called with the news. His reply: “Ew, that doesn’t sound good.” With no time to process the momentous revelation, it was all his mind could come up with. “She called me looking for consolation, comfort and empathy, and those weren’t exactly the words she wanted to hear,” Silver recalls. “Later, she told me she thought she must have called the wrong husband.”

Silver spent the rest of the day at work, trying to figure out what to do. “In retrospect, I should have gone home and been with her,” he says. “But it was easier to be at work, where I was in control. At home, I’d have been entering this unknown terrain, not knowing what I was supposed to say or do.”

To a large degree, men respond to a cancer diagnosis based on the way they were socialized, Patton observes. “You’ll see that men are often engaged by tasks — mowing the lawn, changing the oil in the car — while women often gravitate toward process.” That may sound stereotypical, but research has shown that the sexes take decidedly different approaches to caregiving, according to Kevin Stein, who holds a doctorate in clinical psychology and is vice president of the American Cancer Society’s Behavioral Research Center. “Our study of 1,500 caregivers showed that men tend to be focused on more pragmatic, less emotional and less psychological issues,” he notes.

When faced with a threat to a loved one, men tend to “go into that primal role of protector and defender,” says Patton. “I’ve had men say to me, ‘If cancer was an actual creature threatening my wife, I’d kill it.’” With no actual enemy in sight, however, the protectors are left with nothing to do, which creates a feeling of helplessness and frustration. To fight that feeling, they sometimes jump to conclusions about what their partners need, and in an effort to help, actually make things worse.

Silver’s wife, Marsha, was diagnosed just before Labor Day weekend, and it would be three long days before they could consult with a surgeon. “She loves books, so I dragged her out to a book festival to cheer her up,” he remembers. “She was bereft and upset the whole time, and I felt like a comedian who was dying onstage. I was trying to make her feel better, and nothing was working.”

RELATIONAL CHANGES

That’s because a cancer diagnosis creates a new reality for a couple in which the old ways of communication may no longer work, says Patton. Although men have the best of intentions in doing what they think is necessary, it may not be what their partners need, and that can lead to hurt feelings on both sides. Men end up believing that their efforts are unappreciated, and women feel unheard, he explains, which can cause withdrawal and a further breakdown in communications. Adding to the stress that men can feel after a diagnosis is the sudden change in roles it often entails. “As we know, females tend to be the caregivers in our society. Not to be stereotypical, but that’s the way we’re socialized,” says Rachel Cannady, the American Cancer Society’s strategic director for cancer caregiver support. “When a female partner is diagnosed with cancer, the man becomes one of, if not the, primary caregiver.”

Of course, some men cope with the role reversal better than others, for a number of reasons. When Mike Beck’s wife, Pam, began to experience abdominal pain recently, doctors assumed it was probably diverticulitis, but a follow-up colonoscopy revealed bowel cancer. After surgery, the retired engineer drew on his experience in caregiving from his wife’s previous bout with a pituitary adenoma, making sure the household chores were done and that Pam had everything she needed. “We kind of share in doing everything, so I’m used to doing those sorts of things,” he says. “But I know that some of my friends wouldn’t be at all comfortable driving their wives to appointments, helping them up and down stairs, getting them dressed and doing the cooking and laundry.”

THE REALM OF EMOTION

Even after adjusting to the new and unfamiliar duties they need to perform, men often have trouble providing their partners with what can be their most important need: emotional support. Faced with a problem they can’t solve, many men simply shut down emotionally, which is one of the worst things you can do when your partner needs support, says Patton.

“Not knowing the answer to a problem is not something we see as a strength,” he notes. “One of the things I’ve taught men to do is to ask her, in those times when you’re feeling insecure and don’t know what to do, ‘What do you need from me right now?’ Don’t assume and don’t project: Just ask. Perhaps she’ll want you to simply sit there with her for a while, or even tell you she needs to be alone for a few minutes. Allowing yourself to be vulnerable lets you ask the right questions and learn what the other person’s needs really are.”

Being vulnerable doesn’t come naturally to many men, and it requires switching from a task-oriented outlook to a more open, process-centered one, says Patton. It means that while we still take our partners to chemotherapy, get their prescriptions filled and get the housework done, we are also “sitting, holding, watching a movie together, just being there with them,” he advises. “Behind the scenes, this guy who has shut down, who is numb, who is not showing much emotion on the outside, is crumbling on the inside, and she may not see that.” Giving your partner a window into your thoughts can build intimacy and allow for deeper communication, says Patton.

“Someone told me the motto for guys should be ‘Shut up and listen,’” says Silver. “Because with cancer, you can’t fix it, and you’ll go crazy if you try.” His wife is a teacher, and during her chemotherapy regimen, she returned to the classroom. Silver was worried that she might not be up to it, and kept advising her to take more time off. When he finally prevailed and she stayed home for a day, “it was the worst day of her treatment, because all she did was sit and worry,” Silver remembers. “For her, it was much better to be in a classroom, teaching. Cancer was taking so much away from her, and she didn’t want to give up that part of her life.”

COMMUNICATING WITH KIDS

When children are involved, the scenario becomes more complicated for male caregivers. Not only does this increase the number of tasks for the caregiver, but there is also the question of how much to tell kids, and when. Giving them too much information at once can be overwhelming, and too little can send their imaginations into overdrive. Once again, listening is key, Patton says.

“Sometimes they tell us how much they want to know. We may tell them that mommy’s in the hospital, and tomorrow she’s having something called surgery. That may be enough for them, and they’ll want to go play,” he says. “Maybe they’ll come back later and ask what surgery is, and we can explain that.”

This is not a time for “tough love,” Patton adds. “Sometimes, as men, we may think, ‘Well, there’s no need to drag this out — let’s just rip off the band-aid and get it all out.’ But if we don’t let them go play or watch television, they’ll shut down emotionally and not hear it anyway. They don’t need to hear us whispering and leaving the room when we talk, because they’ll know something’s up. We need to listen to their signals, and ask them what they think about what we’ve told them.”

One way to help allay their fears is to substitute the word “and” for “but,” says Patton. “If we say ‘Mommy’s sick, but she’s going to be OK,’ it can cause some cognitive dissonance; all they hear is the word ‘but.’ Instead, we can say ‘Mommy is sick, and we believe she’s going to be OK.’ As a child, I can now hear that she’s sick, can also hear that she’s going to be OK, and my mind can comprehend both realities.”

A few psychological tweaks can help caregivers as well, especially right after a loved one’s diagnosis, when our minds immediately begin generating vivid worst-case scenarios. Patton notes that when we have a thought, we conclude it has truth in it and look for ways to support it, a leftover from ancient times when ignoring a lion could be fatal. “What I often tell people in that situation is, ‘Let’s not believe everything we think. Many of the thoughts that go through our minds have no evidence to support them.’”

THE MIND HAS A MIND OF ITS OWN

When a scary thought arises, Patton suggests, rather than simply reacting, we can stop and consider the thought for a moment. Pausing to think about our thoughts and feelings can help us cope much better with concerns and fears that could otherwise spiral out of control. In his book The Feeling Good Handbook, clinical psychiatrist David Burns reveals that many of our negative thoughts arise from cognitive distortions that may have become habitual over the years. He explains that by talking back to those thoughts and substituting more rational ones, we can alleviate much of the stress and anxiety in our lives — even if it comes from a frightening source such as cancer.

Counseling can also be effective in helping men work through the distress of a cancer diagnosis, but studies have shown that they avail themselves of therapy in much smaller numbers than women do. That’s unfortunate, because a good therapist can be your best ally when cancer strikes a significant other. Forget the cartoon psychologist scribbling notes while his patient drones on about his mother — in today’s therapy, the counselor and client address issues as a team.

“I’m not going to make you lie on a couch and talk about your childhood,” says Patton. “I’m going to care about what you’re going through, and we’ll talk in a private setting where you feel respected and cared about, whether you’re a solider coming back from overseas or someone whose wife has an advanced malignancy.”

Often friends will offer to help as well, but in order for that to happen, it’s good to be specific about what’s needed. Because asking can be uncomfortable, Cannady recommends creating an online presence at the ACS’s My Lifeline site, where you can post needed tasks on a web page and people can sign up to do them. She reports that caregivers tend to use the resource even more than the people they’re caring for do, forming enduring communities to help others in similar situations.

Finding such a resource might have helped Lucas D’Onofrio, who had no friends experienced in cancer caregiving to lean on after Tamara was diagnosed. But he did have an idea. “I’d been thinking about proposing long before the whole cancer thing,” he says, and decided to make the leap on the day of her last chemotherapy session. “I felt that ending chemo was closing one chapter in our lives, and I wanted to start a new chapter with her,” he says. Some 20 friends helped create romantic decorations and stage them in a nearby ward, and nurses took Tamara away long enough for the crew to festoon her room with roses, candles and heart-shaped balloons.

When Tamara returned to her room, pushing her IV stand along a trail of rose petals, Lucas was waiting. After a short speech, he got down on one knee, proffered a ring and asked her to marry him. While fireworks provided by Lucas’ brother erupted outside, Tamara said through her tears, “Of course.” When they wed in October, it will be the culmination of a journey that proves that when a couple team up to fight cancer, they can work wonders.