| Jane Smith 2004-10-21, 7:06 pm |
| The following is an excerpt from the book Breast Cancer Husband: How to Help
Your Wife (and Yourself) Through Diagnosis, Treatment, and Beyond by Marc
Silver.
Caregiving 101
A practical guide for clueless guys
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.
Mr. Don't-Fix-It
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."
Guy Talk
"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.
Independent Women
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. (October 2004; $14.95US/20.95CAN; 1-57954-833-4) Permission granted
by Rodale, Inc., Emmaus, PA 18098. Available wherever books are sold or
directly from the publisher by calling (800) 848-4735 or visit their website
at www.rodalestore.com.
Author
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.
For more information, please visit www.writtenvoices.com.
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