WHEN FACED WITH A DIAGNOSIS OF CANCER, either as a patient or a caregiver, a person can easily get overwhelmed by the amount of information to sift through. As a caregiver, you play an important role in keeping track of it all. So how can you best support your loved one in this role?
Have a Frank Talk
First and foremost, understand the patient’s wishes: How active does he or she want to be in seeking out information related to treatment, care or finances? And, importantly, what are your loved one’s thoughts in terms of quality of life and the aggressiveness of treatment options? Have this conversation at a time when the patient can think and speak clearly, and divide up the responsibilities. Remember to consider how much the patient (and you) can realistically handle—physically and psychologically. Don’t hesitate to ask for help from others when you need it. (And be sure to document the patient’s wishes for treatment and care. Advance directives can help protect the patient and take the pressure off you in the event an illness progresses.)
Rely on Reliable Sources
Seek out as much authoritative information as you can about treatment options, and work with a medical team with whom you and the patient feel comfortable. A Cancer Support Community program called Open to Options (888-793-9355) provides trained professionals who help patients develop treatment question lists to make the most of their physician visits. The Informed Medical Decisions Foundation offers tools that can help patients make decisions based on their values and preferences. Other reliable sources of information about cancer and its treatment include the National Cancer Institute, the American Cancer Society, OncoLink and organizations found in the “Cancer Resources” listings on the American Association for Cancer Research’s website.
Go to the Doctor
Amid the fog of diagnosis, the patient will benefit from having you at medical appointments to take in information. Also, you will know—better than any medical team—how a doctor’s suggestions might affect your loved one. As the caregiver, you can help the medical team understand the patient’s values, fears, capacity to follow through with certain treatments, and body language. In my experience, I could tell if my husband, Matthew, didn’t understand his physician and then I’d prompt the doctor to explain better. I also knew when Matthew was anxious and not processing information, or when a proposed treatment was not a good fit for him.
Tackle Finances With Tact
The caregiver’s job often involves facilitating with insurance issues, such as learning about coverage, checking up on pre-certifications and referrals, and untangling complicated medical bills. It is a fine line to walk: You don’t want to take away the patient’s dignity or independence if he or she wishes to handle these tasks, but you need to protect your loved one’s interests as well. Keep in mind that your role may change, and that it is important to check in with the patient once in a while about the division of responsibilities. When my husband became sick, he initially handled the medical bills. As his illness progressed, he preferred to focus on his treatment and I took over the financial chores. Conversely, as a patient recovers, he or she may want to assume a greater role in seeking information or sorting out bills.
Gathering and disseminating information for a loved one through a cancer experience is not easy, but remember: Keeping an open and ongoing dialogue will help you navigate it together.
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