• Waldenström Macroglobulinemia
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  • Leukemia
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  • Lung Cancer
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  • Mesothelioma
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  • MDS
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  • Rare Cancers
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Caregiving: Taking on a New Role

CURECancer Guide 2014
Volume 0
Issue 0

Notes on navigating the challenging territory of caregiving

Being a caregiver is one of the most important—and loving—things someone can do. And millions of Americans have taken on this role. Navigating this new terrain isn’t without its challenges, but, while everyone’s cancer journey is unique, there are some caregiving tips that apply to nearly everyone.

Talk it out. It's important that caregivers take some time to process what's happening. They should talk to the patient about the decisions that will need to be made quickly, including second opinions, treatments and where to be treated.

Listen and learn. During appointments, caregivers should take notes or, with the doctor's OK, record the session. Unless the caregiver has permission from the patient to pursue a dialogue with the doctor, the patient should lead the conversation. Once the treatment plan has been determined by the medical team, the caregiver should get the plan in writing and ask questions about any points that are unclear.

Be realistic about what's ahead. Treatment can be taxing, both emotionally and physically, so caregivers shouldn't minimize what they or their loved one is going through. Patients react differently to treatments, and chemotherapy's toll can be cumulative. Patients may feel fine at the outset of treatment but may feel worse before starting to feel better.

Perform simple acts of kindness. Small gestures can help lift patients' spirits. Experts say it's completely normal for patients to experience days when they feel dejected, lonely, afraid or depressed. Caregivers should allow patients some time and space to be alone.

Discuss legal and financial issues. If the patient hasn't already done so, he or she may want to take care of important affairs, such as wills, living wills and medical power of attorney. Even if the cancer has a high cure rate, it's something everyone should do at some point. Also, consider reviewing financial details, such as bank accounts, tax documents, stocks, bonds, mutual funds, CDs and contact information for financial advisers.

[Creating a Cancer Notebook]

Allow patients to express feelings. Caregivers should make sure patients feel safe and comfortable expressing exactly how they feel, and remind them that there’s no need to be upbeat all the time.

Call a family meeting. Friends and family, regardless of distance, may want to be involved. Caregivers should organize a family meeting, even if it's just by phone, to discuss who will do what. It's important for the patient to be involved, too.

Finally, if outside help is needed, be it a home health aide or hospice worker, caregivers should be honest with patients. Ultimately, patients want to maintain as much independence as they can and, as much as possible, control decisions about their care.