How to Create a Strong Cancer Support Team

Quick summary

As the full reality of what it means to care for a parent with cancer starts to sink in, one thing becomes clear: it takes a village to care for someone with cancer. Because the disease is multifaceted and affects so many aspects of your parent's life, a number of different health professionals will be involved in your parent's care. And as time goes on, you'll need other services that can make your parent's -- and your -- life easier. You'll likely find yourself communicating and coordinating with those professionals as well. Then there are other services -- everything from a local handyperson to a grocery delivery service -- that can make the job of caring for your parent 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 your parent'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 your parent's doctors know you. Tell your parent that you'd like to go to appointments with his primary care doctor, oncologist, and any specialists involved, such as surgeons. If he resists, a good ploy is to offer to take notes. Your parent's oncologist will probably choose or recommend the other experts involved in his care, but that doesn't mean you can't meet those experts and make sure they're up to your standards. And if you've heard about a particular surgeon or other expert you'd like your parent 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 your parent 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 her, too. You never know when you may need to go back or call with additional questions. "As you and your parent 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 your 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 your 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 your parent's cancer treatment. Nutritionists can spot nutritional deficits that may be undermining your parent's health, recommend supplements, and provide meal suggestions and recipes to stimulate your parent's appetite.
• A physical therapist. When your parent suffers from neuropathy and other types of pain, a physical therapist can teach him 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 your parent more comfortable.
• A social worker. This is the person you want to be able to call when your parent 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 your parent's ability to take an active role in his 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 the painkillers prescribed for your parent aren't working or are creating complications, you'll want to call this expert. A pain specialist can evaluate the source and intensity of your parent's pain, and find ways to treat it even when first-line medications aren't working. A pain specialist can also coordinate with a physical therapist to come up with a two-pronged approach to treating your parent's pain.

4. Enlist or notify your parent's dentist.

It can be hard to anticipate the issues that may come up during your parent's care, and you don't want to be caught by surprise. You may, for example, want to have your parent contact his dentist and notify her of the cancer diagnosis, since dental issues can complicate cancer treatment. Ask the dentist if you should have your parent 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.

5. Get referrals to alternative or complementary practitioners.

Depending on your parent'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 your parent 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 your parent starts experiencing painful symptoms and needs help now . It's always best to talk to your parent's oncologist before starting complementary therapies, Daneker says, to prevent any interactions between medications and herbs or supplements, and also so his doctor doesn't feel like you're doing an end run around her.

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 your parent's house and would notify you if she heard strange noises or the lights didn't go on one night? Ask your parent if he knows his neighbors, and if so, ask him to introduce them to you. Even if he 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 more than happy to help. Ask for their phone numbers, and make sure everyone has yours posted near their phone.

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 your parent 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 your parent's care.

8. Contact your parent's religious organization.

If your parents go to a church, mosque, or synagogue, attend religious services there and ask to meet 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.

If you start to feel isolated or alone at any point during the process of caring for your parent with cancer, talk to his doctor about it. Many hospitals have a network of cancer support services that you can access when you need them. Also, communicate as often as possible with family, friends, and members of your parent'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 people know you're struggling, and you'll almost certainly be surprised by the outpouring of support you receive.