“When my wife was first diagnosed with breast cancer, I just had no clue. I really didn’t know what to do,” says Marc Silver, author of the 2004 book ” Breast Cancer Husband: How to Help Your Wife (And Yourself) Through Diagnosis, Treatment, and Beyond.”
He says the bombshell arrived in the form of a phone call from his wife, Marsha Dale, on the Friday before Labor Day in 2001. She called him at work (he was working for U.S. News & World Report at the time) and told him “a call-back mammogram had prompted a doctor to say, ‘Sure looks like cancer to me,’ which is sort of a horrible way to communicate information to a patient,” Silver says. His own initial reaction was “Ew, that doesn’t sound good,” which he says now was clearly not the best thing he could have said at that moment.
The couple’s phone call immediately turned to practical matters. “We talked about what we’d do next, because it’s easier to talk about logistics than feelings,” Silver says. And once the plan for the next few days was sketched out, Silver says he ended the conversation with, “‘OK, honey. See you tonight,’ and I stayed at work all day. Which in retrospect was probably not a good caregiving choice,” he says.
[See: 14 Ways Caregivers Can Care for Themselves.]
Looking back, Silver says he would have handled that initial phone call and some other aspects of the journey differently, and that’s what led him to write the book. “I wished I’d had a manual,” he says. He felt ill-prepared to provide the support he knew his wife needed, but his experience was typical. Many people who are suddenly thrust into the role of caregiver for a loved one with breast cancer have a steep learning curve in figuring out how best to support the patient while also taking care of themselves.
“We think of caregivers as unpaid loved ones who give the person with cancer physical and emotional care,” the American Cancer Society reports. “They may be spouses, partners, family members or close friends. Most often, they are not trained for the caregiver job.”
From the moment of diagnosis through completion of active treatment and well beyond, caregivers shoulder a range of unfamiliar responsibilities. In addition to attending to practical and logistical needs of the patient — such as helping them get to doctor’s appointments, fighting with insurance companies over billing issues, finding the right doctor or seeking a second opinion and puzzling through the maze of treatment options and medications that the patient is presented with — the caregiver is also comforter-in-chief for the patient. This all occurs at a time when the caregiver is dealing with the emotional upheaval of the prospect of losing a loved one.
“As difficult as it is for the patients with the cancer, we frequently say there’s an equal but different stress for the caregiver,” says Dori Klemanski, clinical director of survivorship at the Ohio State University James Cancer Hospital in Columbus, Ohio. The person who’s providing care “is trying to adjust [to the new role] while processing that their loved one has cancer. Once treatment starts, they often have added responsibilities because they’re trying to shift that off the patient,” she says. These added responsibilities could include taking over chores around the house that used to be divided equally or taking over other tasks the patient used to handle, such as caring for children or other relatives.
“They’re trying to balance so many things in their life, so they’re emotionally dealing with it and they’re trying to practically take on what their loved one used to do. It’s often a mix between trying to adjust their life and trying to pick up some of the pieces that would traditionally be what the patient would handle,” she says.
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Despite the fact that there are so many demands on the caregiver’s time, Klemanski says perhaps the most important thing caregivers can do is to take some time to take care of themselves. “It’s crucial that they be able to give the love and support to the person diagnosed, but they also have to take care of themselves because, if they don’t do that, they won’t be as accessible or available or possibly even well enough to take care of them.” She says this self-care needs to address the mental, physical and spiritual needs of the caregiver. “We encourage [caregivers] to take moments out of the day for themselves.”
It’s also important for caregivers to get their own regular screenings and check-ups. Caregivers also need to make time to exercise, eat right and get adequate rest, as doing so will keep you healthier over the sometimes-long timeline that treatment for breast cancer can require. In Silver’s case, his wife’s treatment began with surgery in October and wrapped up seven months later with her last chemotherapy session. To fit it all in, you may need to ask for help, particularly when it comes to legal or medical advice. “This is often a new experience for the caregiver, and if they’ve never had any experience with the health care system, it can be daunting,” Klemanski says.
It’s also important to recognize that caregiving is a big job and not an easy one. Klemanski says joining a support group, seeking counseling, practicing yoga or mediation, journaling or seeking out whichever form of self-care appeals to you most can help you cope with the stress of caregiving so you can be your best self for your loved one.
Lastly, Klemanski says that not minimizing what you’re going through is the biggest message she wishes caregivers would hear. “A lot of times we notice that caregivers will not share their burden lightly with others. They say, ‘I’m not the one with cancer,’ so they minimize what they’re going through,” which can be isolating and make the job of the caregiver that much more challenging. “Just acknowledging and validating that this is a real thing that happens is helpful. Sometimes just knowing that [they’re] not alone is very important to them.”
[See: 7 Innovations in Cancer Therapy.]
Silver confirms this was true for him and that normalizing his feelings helped him become a better caregiver. “You’re thinking something or feeling something and thinking you’re such a bad person because you’re thinking this or feeling that, but it’s probably perfectly normal. I remember I cried in the car once and I thought, ‘Oh my God, I’m having a complete nervous breakdown and I don’t dare tell my wife, because how would she feel if she knew I was crying in the car?’ And then when I interviewed husbands for the book, a lot of them said, ‘Oh yeah, we cried in the car too.’ It made me feel better, that it was sort of a normal reaction. So there is a lot of comfort in knowing how other people have gone through things and knowing that the things that you’re thinking and feeling, probably other people have had them as well,” he says.
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How Can Caregivers Best Help Breast Cancer Patients? originally appeared on usnews.com
