Caregiving 101: A Practical Guide For Clueless Guys
By: Marc Silver
What kind of caregivers do men make?
That was the question posed to eight breast cancer couples in a focus group at Johns Hopkins Hospital in Baltimore. The women graded their husbands on their caregiving performance during the months of diagnosis and treatment. The husbands graded themselves as well. To a man, the guys gave themselves lower grades than did their wives, who praised their husbands for their wonderful support. The men were genuinely surprised by the high marks.
So there you have it: proof that we breast cancer husbands aren't quite as bad at caring for our wives as we might think we are. "I don't think men are crummy caregivers," agrees social worker Matthew Loscalzo, director of patient and family support services at the University of California at San Diego Cancer Center, who has worked with cancer patients for over two decades and who helped run the focus group. "I think men give caring the way men give caring, and women give it in a different way."
What the breast cancer husband must learn is to be the kind of caregiver that his wife needs. "It's not about you, ya bastard," says Sherwin Nuland, M.D., with a wink. He's clinical professor of surgery at Yale University and author of the award-winning book, How We Die. "It's not about how sensitive or how strong you can be."
So what is it about? A breast cancer husband has to figure out what his wife needs from him. For years, you may have skated by with sex, Saturday nights out, and the occasional box of candy. Now you'll need to come to a deeper level of understanding. Mind reading is not recommended. Nor will renting the movie What Women Want give you a clue, especially in the wake of breast cancer. You may stumble along the way. "I'm sure I didn't do some things right," says Claude Robinson, 72, of Capitol Heights, Maryland, whose wife, Lawanna, underwent a lumpectomy, followed by radiation. "I just hope I did most of the things right. It's like a marriage -- you don't do everything right, do you?"
Take heart -- it's not an impossible job. And your wife will deeply appreciate your efforts. "Greg was my prince," says Heidi LaFleche of her husband, Greg Passler. "He rose to the occasion in ways big and small, from camping out with me in the living room [she slept on the couch because it was closer to the bathroom] to going to the pharmacy at 3:00 in the morning. He was present on every level." And he never even let on that sleeping on a worn-out futon mattress was a pain in the back.
There's a lot of confusion in the male brain about what it means to be a caregiver. That's understandable. In many couples, the woman assumes more of the caregiving responsibilities. "Men are just not taught to be caregivers in any sense of that word," says social worker Jim Zabora.
Ain't that the truth. And at a time in our lives when we do need to give care -- when our wives are about to give birth -- at least we get a little training. When our honey is heavy with child, we dutifully accompany her to childbirth classes and learn all about the father-to-be's Very Important Job: tell the Mrs. to breathe and relax during labor. You know, just in case all those doctors and nurses forget to remind her.
Zabora is one of the many folks in the health-care field who'd like to see an educational session or two for newly diagnosed women -- and for their husbands or boyfriends. Someday, that may be the norm. The Centers for Disease Control and Prevention recently awarded a $1.1 million grant to Men Against Breast Cancer, a fund-raising and educational group based in Rockville, Maryland, to establish such programs on a pilot basis for the "underserved African-American, Latino, and Indian populations."
But right now, most men are on their own when it comes to cancer caregiving. They may mean well, but they tend to jump to the wrong conclusions. And the number one wrong conclusion: They think a caregiver has to fix things.
I don't know whether Mr. Fix-It is hardwired into our genes or drummed into our skulls, but this is one stereotype that holds true across the board. Psychologists, social workers, medical doctors, breast cancer survivors, and, of course, breast cancer husbands all agree. Guys feel compelled to "fix" cancer. We want to take it on at the basketball hoop, one on one. We want to pull out a six-shooter and start firing away. Perhaps that's why we judge ourselves harshly as cancer caregivers. No husband can defeat cancer. Ergo, we've failed to protect our wives.
That sense of powerlessness can make a husband miserable.
"My entire life revolves around fixing issues," says Colton Young, 42, who's vice president of an environmental management company outside of Philadelphia. "I get paid to go in and mitigate people's problems." When his wife, Kathleen McCarthy, was diagnosed with cancer at age 36, he had to face the fact that he couldn't fix it: "There ain't a damn thing you can do about it but sit back and hope the people you have on your team are with you. It's a horrible feeling of utter helplessness."
Paul Byers, a journalism professor from Washington, D.C., whose wife, Fran, was diagnosed with breast cancer, is familiar with the feeling. "I can do chores, I can make life easier in other ways. But I can't take on the real issue itself."
"You can't find the solution or rescue the fair maiden," agrees Carol Stevenson, 56, of Arlington, Virginia, a 4-year breast cancer survivor. But that doesn't mean the spouse is indeed helpless. Carol needed her husband, Phil Gay, to be there with her. Not to solve her problems or to conquer cancer, but to stand by her side and to accept her as she was. "The most important thing for me was to know it was all right to be sick, and not beautiful, and not the epitome of femininity. He was always there to hold me if I needed to be held or to talk to me if I needed to talk. I was very grateful for that."
"Men are fighters. We want to go out and pick up a gun and shoot breast cancer. But the biggest thing men need to do is show that we care."
-Stephen Peck, 59, Washington, D.C., who lost his wife, Gayle, to breast cancer
Carol remembers coming home from the hospital with "bulbs and things" hanging from her armpit incision and feeling as if she were a weird-looking Christmas tree. "It was gross," she says. "But Phil accepted that, and arranged the tubes and bulbs and cuddled up next to me." That was what she needed. Not advice, not a miracle, not a Mr. Fix-It. "Just a witness" to what she was going through.
A witness -- not a judge. David Kupfer of Arlington, Virginia, recalls how his fiancée, Cathy Hainer, liked to rest on the couch in the living room after chemo. That bothered him. "I wanted her to sit up or to lie on a bed upstairs," he says. "I had to work to realize that's how she wanted to be."
David had other caregiver lessons to learn. One time after Cathy's chemo, David's son (from a previous marriage) had soccer practice. He said to Cathy, "Since you are going to sleep, is it okay if I watch soccer practice?" And she said, "Sure."
Silly as it may seem, that bothered David. It bothered him that he wasn't so important that he had to be by Cathy's side every second of the day. "I had to learn that I wasn't indispensable," he says, "which really irritated me."
In other words, he had to learn that the caregiver isn't in charge -- the patient is.
Your wife, meanwhile, may have a difficult time switching gears from caregiver to care receiver. "Women are not used to having people take care of them," says Susan Abrams, an oncological social worker in Maryland. "They don't know how to take it."
That womanly self-sufficiency can be disastrous, as Carol Stevenson is only too happy to tell you. The evening after her first chemotherapy treatment, she ate a light dinner that Phil had prepared. ("I do 80 percent of the cooking," he says. "It was no big deal for me.") A very tired Carol went to bed. Phil retreated to the den to watch a football game. He checked on her at one point, and she seemed to be asleep.
After an hour or so, he heard the toilet flush. Then he heard it flush again. The phone rang. By the time he picked it up, he could hear Carol talking to her doctor. "This isn't good," he said to himself. "She'd been sick, she was on the phone with her doctor to see if there was anything she could do about the nausea, and she decided she didn't want to bother me."
When I spoke with Phil, who's 68, it was 4 years after that night of nausea. But he remembers exactly what he said to Carol: "What am I here for? What do you think I am -- a potted plant?"
Carol and Phil still joke about the potted plant moment. But it was more than just a funny line. "After that, very slowly, she was able to allow me to do things she wouldn't normally have asked me to do," says Phil. "I said, 'Don't get used to this. When it's all over, you can go back to being independent.'"
Reprinted from: Breast Cancer Husband: How to Help Your Wife (and Yourself) Through Diagnosis, Treatment, and Beyond by Marc Silver © 2004 by Marc Silver. Permission granted by Rodale, Inc., Emmaus, PA 18098.
Marc Silver is an editor at U.S. News & World Report, where he has been a longtime contributor to the News You Can Use section. His wife, Marsha, was diagnosed with breast cancer 3 years ago: after undergoing surgery, chemotherapy, and radiation treatments, she is in good health. They are the parents of two daughters, ages 18 and 16.
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