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8 Tips to Care for Your Loved One With Advanced Breast Cancer
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Caregivers are often the unsung heroes of life with advanced breast cancer. According to the American Cancer Society, caregivers play an essential role in the physical and emotional well-being of people with cancer. They may coordinate doctor’s appointments, help with medication, take care of everyday tasks like cooking and cleaning, and more.
Marc Silver, 69, a Washington, D.C., resident and author ofBreast Cancer Husband, the book he wrote about his experience as the caregiver for his wife, says his most important tip for caregivers is to listen. He recalls that one of the first things he learned as a caregiver was that his wife wanted him to just listen and share his opinions when asked, but not try to solve problems or make decisions for her.
Here, Silver and experts share tips for caregivers to think about in three areas: at the doctor’s office, at home, and for taking care of themselves.
Pay attention at the doctor’s office. “I think it’s really great to accompany people to appointments, and if the person is comfortable with it, to take notes,” says Susan Hedlund MSW, LCSW, an oncology social worker and manager of patient and family services for the Oregon Health & Science University Knight Cancer Institute in Portland. “It’s common for people to miss some of what is said and to be overwhelmed by it all.” Take a notebook that lists the questions you and your loved one want to ask and that has space to make notes, or ask for permission to use a recording device.
Help your loved one understand. Use doctor visits to learn more about the advanced breast cancer diagnosis, treatments, and other aspects of care. Taking medications as the doctor prescribes is crucial to breast cancer care, according to a review of data published in the spring 2015 issue ofThe Permanente Journal. Members of the medical team will look for ways to help both you and your loved one stay on top of the recommended medications, so make sure you understand them. “Some healthcare providers are better communicators than others,” Hedlund says. “You can always ask them to help you understand what something means to get better clarification.”
Go easy on yourself.“Caregivers sometimes feel like they don’t have a right to feel frustrated or sad or angry because they’re not the patient, but it’s a shared journey,” Hedlund says. Try to be compassionate to yourself as well as your loved one. Keep a sense of humor. This can be challenging, but make an effort to seek out reasons for laughter, such as funny movies or sitcoms you both enjoy.
Treat yourself and your loved one.Silver recommends giving your loved one flowers or some other similarly beautiful and unnecessary treat. A friend recommended it to him, and at first he didn’t think flowers would make a difference, but they helped lift everyone’s spirits. Also try to get out of the house together. Whether it’s a date night or a weekend away, he says it’s helpful to spend quality time together. Silver and his wife found that a weekend getaway was a necessary break from the reminders of advanced breast cancer treatment for them both, he says.
Work on your relationship.If needed, consider counseling to try to cope with dealing with cancer. Speak in “I” phrases. If you have concerns, using “I” phrasing (“I’ve noticed that …” Or “I feel that …”) instead of “you” phrasing (“You need to …” or “You are always …”) will help you talk about them, Hedlund says. For example, if you want to call the doctor about an issue but your loved one doesn’t agree, try saying this: “Please humor me. I’m worried about this and I’d like to get an answer.”
Don’t be afraid to ask for help. There are lots of people around you, and many of them want to help but don’t know what to do, Hedlund says. Identify the ways they can help and let them know. For example, you both might need help with paperwork, medical accounting, housecleaning, yardwork, meals, or childcare. Or you just might want to invite a friend over to visit with your loved one while you get other things done or take a break, she says.
Take care of yourself. “It’s not only the patient’s life that has changed — the caregiver’s life can change, too," Hedlund says. "If I’m working with both caregiver and patient, I will say to both of them, ‘In order for him to continue to take care of you or vice versa, we have to take care of the caregiver,’” she says. Living with advanced breast cancer also can mean that the need for care comes and goes, with periods of quiet in between. But when caregiving is most needed, you could feel guilty for wanting a break. You shouldn’t, Silver says. “It’s important to take some time for you," he says. "Go to the gym or meet up with friends. You have to step back and recharge your battery."
Find support. Hedlund recommends looking for a support group led by a professional. “Someone trained to facilitate can make sure everyone has a voice and is heard,” she says. But support can be found in various ways. For Silver, the process of talking to people for his book about their caregiving experiences served as a kind of support group for him. He also recalls the support he received from another man who'd been a caregiver and called him every few weeks just to check on him. That was the right level of support for him at that time. The important thing is to find what works for you. “Particularly for caregivers who feel they can’t leave their loved one alone, telephone or online support is good because it comes to them,” Hedlund says.
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