Supporting a loved one with cancer: Practical and emotional tips

By Alice Gomstyn

Supporting a loved one through a life challenge is often a matter of following your instincts. That’s not the case when someone close to you is diagnosed with cancer. After the initial shock wears off, friends and family can wonder what they should be doing to help. These expert tips can help you provide the right practical and emotional assistance.

Educate yourself about their condition.

As the saying goes, knowing is half the battle. To help a newly diagnosed patient, you’ll want to learn everything you can about the illness and available treatments — especially if you're helping them devise a care plan. Here are a few things to keep in mind.

·         Ask your oncologist about “patient navigators.” Oncology offices increasingly have staffers known as patient navigators who can make appointments and answer questions from patients and caregivers about treatment plans. "When someone is diagnosed with cancer, they can have multiple appointments for CAT scans, biopsies, surgery, radiation and chemotherapy," says Michelle Majoy, a nurse and care manager at Aetna. "The patient navigator sets that all up for them and lets them know what kind of local resources are available."

·         Talk to your insurance provider. Some insurance plans offer extra support to cancer patients and their caregivers. At Aetna, cancer patients are often assigned care managers who can speak with physicians and answer questions about treatment. With the patient's permission, care managers may speak with caregivers on a regular basis as well. Your insurance provider may offer other specialized cancer care benefits. For example, some Aetna plans may cover experimental cancer treatments when the patient is part of a clinical trial.

·         Attend doctor appointments. Because of privacy laws, friends and family can’t just call the doctor for updates. Although patients can sign a release allowing caregivers to speak directly with the doctor in their absence, many loved ones can be left in the dark. For that reason, Majoy recommends a friend or family member attend appointments with the patient. Discuss any questions you may have ahead of time so you’re on the same page when you’re in front of the doctor.

·         Get a post-appointment update. Often, it’s not possible for the same individual to attend all appointments with the patient. If you can’t be there in person, check in with the patient or their companion soon afterward when key information is still fresh in their mind. You can also suggest that the patient request a printout of the doctor's notes taken during the appointment and their treatment plan. Don’t take it personally if your loved one is less than forthcoming. "Caregivers want to help, and respecting someone’s privacy can be difficult,” Majoy says. “But it’s important to have a balance and not allow cancer to define you or your relationships."

·         Approach online research with caution. "The Internet has a vast amount of information, and it can be difficult to decipher the valid from invalid," Majoy says. Reputable websites like the American Cancer Society (cancer.org) offer information you can trust. You may also run across research that you don't fully understand or find upsetting. Shara Sosa, a Virginia-based oncology therapist and a cancer survivor herself, suggests that you discuss what you find with a care manager or other expert. They can translate clinical jargon into plain English and advise you whether the information is actually relevant to your loved one’s case.

·         Think twice before forwarding information. As you learn more about your loved one's condition, you may be tempted to share with them everything you discover. Sosa cautions against that: People have different communication styles and preferences for how they receive information, and from whom. "Some patients want to learn about all of the details and possibilities,” Sosa says. “Others prefer to wait and hear everything from their health care team.” When caregivers and patients don't share the same style, things can get tense. That's why, Sosa said, it's important for friends and family to ask the patient about their learning style and the best way to share information.

Assemble a support team.

Experts agree that patients and caregivers should try to develop a broad support network rather than relying on one or two people. "It’s helpful to spread the wealth. Remember that this is a marathon, not a sprint," Sosa said. Here are a few tips for sharing caregiving duties:

·         Look beyond obvious sources of help. While primary caregivers tend to reach out to close family, they may be surprised by who actually steps up to the plate. Neighbors, friends, and congregants at their houses of worship are often willing to lend a hand in tasks ranging from grocery shopping to sitting with the patient for a couple of hours. On the other hand, people who seem like prime candidates for offering support — a relative or a close friend — may disappoint. Sosa's advice? Accept it and move on. "If someone doesn’t come through, you grieve the loss of what you had thought or hoped for and then you move forward," she says. "You've got to focus on the people who are showing up."

·         Bring everyone together in person on online. Once a caregiver identifies members of the patient's support network, it may be helpful for the whole group to meet once or twice, to get to know one another and assign various duties. Technology can also help. Sosa recommends the website LotsaHelpingHands.com, which provides caregivers and patients tools for organizing meal preparation and other care-related tasks.

·         Choose a communication platform. Technology can also help cut down on the time caregivers spend informing people about the patient’s condition. Constantly fielding calls or emails from well-meaning folks can be overwhelming, Sosa says. Caregivers can use sites like CaringBridge.org to post updates about the patient's health. Changing your outgoing message to refer friends to the website also cuts down on voicemail overload. "You're sharing very intimate, personal information over and over again," Sosa says. "When you can condense it down to one place, it really does free caregivers up. People know they can check the site and see what's happening."

·         Turn to community groups for extra help. If personal support networks prove insufficient, local nonprofits can often pick up the slack. For Aetna members, care managers can point you to community resources such as meal delivery programs.

Focus on the patient's emotional needs. 

While the physical effects of cancer and treatment are tough, the emotional consequences may be no less difficult. Distress among cancer patients is associated with reduced quality of life and poorer clinical outcomes, according to the National Cancer Institute. Here are some ways to address a loved one’s emotional needs:

·         Seek out counseling options. As you educate yourself about your loved one’s condition, consider learning about the mental health resources available to them, too. Some insurance plans offer counseling programs to cancer patients and family members on the same plan.

·         Preserve the patient’s dignity. When you’re deeply involved with the patient, it may be tempting to handle everything for them. In the process, you may risk going against their wishes or threatening their sense of independence. Simply asking them about their needs makes a big difference. "Asking questions shows respect," Sosa said. "Don’t assume that you know."

·         Make visits on their terms, not yours. If you're not the patient's primary caregiver but still want to lend emotional support, just visiting the cancer patient is a great way to help them fight feelings of isolation. The American Cancer Society (cancer.org) recommends that you schedule brief, regular visits to give patients something to look forward to. If your schedule allows it, consider visiting at times when others aren't available to keep them company — during weekday afternoons, for instance.

·         Discuss fears honestly together. You may think it's best to keep your concerns about your loved one's disease to yourself, but that's not necessarily the case. Both patients and caregivers may find relief in discussing concerns openly. "What really gets tricky is that the caregiver and the person living with cancer rarely share their fears with each other because they're trying to protect each other," Sosa says. "What I tell people is that, whatever you're afraid of, the person with cancer has already thought of that. This dance of trying to protect one another is rarely fruitful. It enriches the relationship when both parties know they can be honest." Try to resist the urge to say "It's all going to be okay" or offer other false certainties. "Don’t make promises or assure them of things you simply don’t know,” Sosa says. “It’s okay to not know."

·         Don't be a superhero — just show up. As you strive to help your loved one, don't forget that you're human. Let go of concerns that you're not doing enough, or not doing something well enough. "A lot of the time, caregivers feel they have to say or do something really amazing. But it isn't necessary," Sosa says. "They're not realizing the value of just being present. If you have a desire to show up and be with that person, that goes a long way."

Alice Gomstyn is a veteran parenting blogger and business reporter. She is an admitted sugar addict but plans to cut back on the sweet stuff and load up on veggies like never before. Bring on the broccoli!

https://www.aetna.com/health-guide/supporting-loved-one-cancer-practical-emotional-tips.html