How to Create a Strong Breast Cancer Support Team
8 steps to pull together the help you'll need
To create a cancer support team, reach out to medical professionals
It takes a village to care for someone with cancer. Because the disease is multifaceted and affects so many aspects of a person's life, a number of different health professionals will be involved in the patient's care. And as time goes on, you'll need other services that can make her -- and your -- life easier. Then there are other services -- everything from a local handyperson to a grocery delivery service -- that can make the job of caring for someone less overwhelming. As caregiver, you'll be like the captain of a sports team, making sure the right people are in the right positions and everyone's working together to win the game. Here are the eight steps involved in putting together a best-of-league care team.
1. Get to know the patient's doctor -- and the rest of the medical staff.
It's much easier to talk to people you know. As time goes on, you'll have lots of questions, and you're more likely to get helpful answers if the doctors know you. Tell the person in your care that you'd like to go to appointments with her primary care doctor, oncologist, and any specialists involved, such as surgeons. If she resists, a good ploy is to offer to take notes. Her oncologist will probably choose or recommend the other experts involved in her care, but that doesn't mean you can't meet them and make sure they're up to your standards. And if you've heard about a particular surgeon or other expert you'd like the person in your care to see, you can always ask the oncologist's opinion.
2. Introduce yourself to the receptionist, the nurses, and anyone else you come into contact with.
When you take the patient to pick up a prescription, stand nearby while the pharmacist goes over the instructions -- making sure both of you understand them -- and don't leave without introducing yourself to him, too. You never know when you may need to go back or call with additional questions. "As you and [the patient] figure out what you're going to do in terms of treatment, you also want to be thinking about who's going to help you do it," says Bonnie Bajorek Daneker, author of The Compassionate Caregiver's Guide to Caring for Someone With Cancer.
3. Ask the doctor what other services might be helpful, and ask for referrals.
You might be surprised how many other health professionals are available to help cancer patients cope -- and how often patients don't get referrals for those services unless they ask about them. Consider adding any or all of these to the team:
- A nutritionist or dietitian. An incredibly helpful resource in dealing with nausea, fatigue, and other cancer-related symptoms, a nutritionist or dietitian can recommend dietary changes to support the patient's cancer treatment. Nutritionists can spot nutritional deficits that may be undermining her health, recommend supplements, and provide meal suggestions and recipes to stimulate her appetite.
- A physical therapist. When the patient suffers from neuropathy and other types of pain, a physical therapist can teach her exercises to combat pain and maintain body strength. Also, a good physical therapist can make suggestions to combat pain in all aspects of life, recommending changes for ergonomic seating and better sleeping positions to make her more comfortable.
- A social worker. This is the person you want to be able to call when the patient is depressed, anxious, stressed, or fearful and your support isn't enough. A social worker can recommend support groups, access mental health services, and look at ways to deal with the many lifestyle issues that can arise in fighting cancer.
- A psychiatrist or psychologist. Depression, anxiety, and other mental health issues are common for people with cancer, and they can complicate treatment by interfering with her ability to take an active role in her own well-being. Psychologists can provide counseling and recommend or run support groups, while psychiatrists can prescribe medication, such as antidepressants and antianxiety drugs.
- A pain specialist. When prescribed painkillers aren't working or are creating complications, you'll want to call this expert. A pain specialist can evaluate the source and intensity of the patient's pain and find ways to treat it even when first-line medications aren't working. He can also coordinate with a physical therapist to come up with a two-pronged approach to treating her pain.
4. Notify the patient's dentist.
It can be hard to anticipate the issues that may come up during a cancer patient's care, and you don't want to be caught by surprise. You may, for example, want to have her contact her dentist and notify him of the cancer diagnosis, since dental issues can complicate cancer treatment. Ask the dentist if she should go in for a dental checkup to make sure there aren't any issues with gum disease or infection, which can contribute to some types of cancer. Also, chemotherapy and radiation can cause problems such as dry mouth and mouth sores, and you may want to enlist the dentist's help with these.
To create a cancer support team, also reach out to nonmedical or nontraditional support
You can help the cancer patient by considering a broad spectrum of nonmedical helpers or alternative therapies, from acupuncture to masseuses and spiritual advisers. It's always best to talk to the patient's oncologist before starting complementary therapies, though, says Bonnie Bajorek Daneker, author of The Compassionate Caregiver's Guide to Caring for Someone With Cancer, to prevent any interactions between medications and herbs or supplements. Also, checking in with the doctor keeps him from thinking you're doing an end run around him.
5. Get referrals to alternative or complementary practitioners.
Depending on the patient's needs and tolerance for alternative approaches, you may want to get a recommendation for an acupuncturist, a Chinese herbal medicine specialist, or both. Acupuncture and acupressure are often helpful for pain management and nausea, and Chinese herbal medicine has been shown to help patients tolerate chemotherapy and cope with nausea and appetite loss. Massage is not only relaxing and helpful in combating stress, but can be beneficial for neuropathy. Since the person you're caring for may never have visited these types of professionals before, it can help to start gathering recommendations ahead of time, so you're not caught off guard when she starts experiencing painful symptoms and needs help now.
6. Recruit help from neighbors and friends.
Identify other people who can play a supportive role and get to know them, too. Would it ease your mind to know the next-door neighbor was keeping an eye on the patient's house and would notify you if he heard strange noises or the lights didn't go on one night? Ask the person you're caring for if she knows her neighbors, and if so, ask her to introduce them to you. Even if she doesn't, you can still knock on the doors of the houses next door and introduce yourself. Once you explain the situation, most people will be eager to help. Ask for their phone numbers, and make sure everyone has yours posted near their phone.
Also, communicate as often as possible with family, friends, and members of the patient's community. If people know that you're overwhelmed and need help, they're usually more than happy to help out as much as you need them to. Let them know you're struggling, and you'll almost certainly be surprised by the outpouring of support you receive.
7. Investigate local services.
Maybe the local grocery store makes deliveries; check online or stop by and ask. This can save you a trip across town each time the patient needs milk or bread. Having a local gardener and handyperson on call can save you unnecessary visits to cope with a broken tree branch or leaky faucet, freeing you to help with the more important tasks of caregiving.
8. Contact the patient's religious organization.
If she goes to a church, synagogue, or mosque, contact the minister, rabbi, or other leader. Ask if the organization has volunteers who visit those who are ill; many religious institutions are used to providing such services to those in their congregations and may even have ideas for other ways they can help.
And don't forget to take care of yourself, too. If you start to feel isolated or alone at any point during the process of caring for the person with cancer, talk to her doctor about it. Many hospitals have a network of cancer support services that you can access when you need them.