5 Steps to Navigate the Cancer Caregiving Journey
Information and conversation are key to facing the challenges of care
En español | Promising breakthroughs in detection and treatment have turned cancer from a likely death sentence into an illness that often can be controlled or cured.
More than 15.5 million Americans with a history of cancer were alive on Jan. 1, 2016, according to the American Cancer Society's Cancer Facts & Figures 2019 report. Most were diagnosed many years ago and have no current signs of the disease.
More people living with cancer means that more family members are serving as caregivers. For all the progress made in fighting the disease, it still can be a frightening diagnosis for patients and the people who love them, and the journey through treatment is fraught with emotional and logistical challenges as well as medical ones.
Here are five steps to help you navigate cancer caregiving and some quick tips for putting them in place.
1. Face the problem
You and your loved one may find yourselves suddenly trying to decode new terminology, process the diagnosis and evaluate how it will change your lives. Whom do you tell, and how much do you tell them?
All of this can feel overwhelming. Information and communication are the keys to coping.
Learn as much as you can about the illness, forge a good connection with your loved one's doctors and ask for assistance and answers when you need them.
- Educate yourself. The National Cancer Institute and the American Cancer Society are reliable sources for the latest research and practical information on cancer. Some cancer centers have mentoring programs that match new patients with someone who had the same diagnosis and can answer questions.
- Assess the medical team. Are you and your loved one comfortable with your physician? If not — if the doctor seems brusque or disrespectful, or you just aren't communicating well — ask for another provider. The last thing you need is a doctor who adds to your anxiety.
- Discuss how to share the diagnosis. Sometimes the patient and caregiver have different ideas about handling the news. One may want to tell everyone in their address book; the other may need time to process it quietly. Be sure you're on the same page.
- Look for ways to pay. If you're helping your loved one manage finances or you share the financial responsibility, determine what health insurance covers. Look into possible sources of help, such as the nonprofit organization CancerCare, which offers limited assistance for copayments and treatment-related costs such as transportation and home care. It also maintains a database of other financial and practical resources.
2. Consider treatment options
Cancer treatments can be tough, with a range of unpleasant or painful side effects. Stay informed, know what to expect and be a strong advocate for your loved one. If you've learned all you can and still are uncomfortable with the proposed plan of care, consider getting a second opinion and investigating alternatives.
- Prep for appointments. Formulate questions for the doctor with your loved one and bring those questions with you. Take notes during the visit to make sure you remember what was discussed, then sit down together afterward and write down thoughts and comments while the conversation is still fresh in your minds.
- Manage medications. Caregivers often help keep track of their loved one's medications, and cancer patients can take dozens of them a day, each with its own protocol. If you need reminders, set an alarm timed for each dose.
- Understand side effects. Chemotherapy and radiation can have debilitating side effects. Ask doctors what to expect, how to manage the side effects and when to call for medical help. Find out about palliative care, which is focused on alleviating pain and discomfort.
- Seek alternative treatments. For less-mainstream options, consult reputable sources such as the National Center for Complementary and Integrative Health at the National Institutes for Health (NIH). Your loved one also might consider being part of a drug trial. All current studies are listed at ClinicalTrials.gov, a database from the NIH's U.S. National Library of Medicine that you can search by medical condition and location.
Cancer facts: Age and survival
- The cancer death rate plunged by 27 percent from 1991 to 2016, a figure that translates to 2.6 million fewer deaths. The main reasons were the decline in smoking and improvements in early detection and treatment.
- The five-year survival rate for cancer — the proportion of patients still alive five years after being diagnosed — has risen from 49 percent to 69 percent since 1975.
- Nearly 2 in 5 people in the United States will develop cancer at some point in their lives. Eighty percent of those cases occur at age 55 or older.
- The probability of an invasive cancer increases from 1 in 16 for people in their 50s to 1 in 3 for men and 1 in 4 for women 70 and older.
Source: American Cancer Society, Cancer Facts & Figures 2019
3. Enlist support
Recognize that you can't do it all. Pushing yourself to the limit will jeopardize your own mental and physical health, not to mention your ability to care for your loved one. Build a team of people who can help, and communicate your needs clearly. Don't forget the little things — a neighbor who can mow your grass or a friend who will pick up a prescription. These add up to more time for you to focus on your loved one and yourself.
- Ask for help. Plenty of people in your life probably will be glad to lend a hand if you simply ask. Consider paying for relatively small services that will take a big load off, such as grocery delivery, a house cleaner or lawn care.
- Stay connected. My Cancer Circle is a free, private online community where you and your loved one can exchange information with friends and family members. Lotsa Helping Hands and CaringBridge also are good communication and organization tools for caregivers.
- Find emotional support. As a caregiver, you may be experiencing anger, fear, grief and resentment. Seek help from a mental health professional, or contact CancerCare for free counseling or in-person, online and phone support groups led by social workers.
4. Prepare for common conflicts
A cancer diagnosis can take a toll on families and stir up all kinds of emotions. Seeing someone you love in pain or scared, especially when you're frightened, too, can be hard. It can be just as hard getting used to what may be a new way of interacting with and perceiving them. The key, as with so many conflicts, is communicating well and often, avoiding power struggles and keeping your loved one's best interests in the foreground.
- Loss of intimacy. Some people undergoing cancer treatment might lose their sex drive or be physically unable to have sex. If you are the partner, communicate your needs and listen to your partner's needs. You may need to redefine what it means for you to be intimate as a couple.
- Disagreement over treatment. Sometimes a caregiver is upset when the loved one refuses chemotherapy or other treatments that might prolong life. A nurse or social worker often can help mediate and offer you both a reality check on the treatment's likely outcome. Remember that, ultimately, the decision is the patient's.
- Uncertainty about your role. Unless very ill, cancer patients usually are able to make their own decisions and can dictate how involved they want you to be. Ask how you can be most helpful. Try not to feel hurt if that means backing off for a while.
- Workload disputes. One family member may feel resentment about shouldering most of the caregiving or may be reluctant to relinquish control, causing resentment among those left out. Have an initial family meeting to make plans and distribute tasks. Communicate clearly and often.
5. Address end-of-life issues
More than 90 percent of Americans think discussing their end-of-life wishes is important, but only 32 percent have done so, according to a 2018 survey from the Conversation Project, a public-engagement campaign that encourages people to talk about end-of-life care. As unappealing as the topic may be, discussing end-of-life matters with your loved ones while they are still relatively well is useful. You both can feel prepared, and your loved ones can determine how they want their final years to unfold, ensuring that you'll know their wishes when you're responsible for carrying them out.
- Start the conversation. Many resources are available to help you broach tough topics, including the Conversation Project's Conversation Starter Kit and a game called Hello (formerly My Gift of Grace) in which players answer questions about living and dying well.
- Help with legal issues. Find out if your loved ones have a will. If they don't have a durable power of attorney for health care and financial decisions, ask whether they would like you or someone else they unequivocally trust to take on that role. Ideally, these things are handled well in advance, but they often aren't.
- Consider hospice care. Hospice is focused on comfort and pain relief at the end of life, usually when the prognosis is death in six months or less. It can be an invaluable service, providing emotional and spiritual support to the patient and their family and friends during a very difficult time.