Frequently Asked Questions 1 2 3 4 5 6 7 8 9 10 11 12 13 How Can I Care for My Loved One? CAREGIVING | Coping | Caring for Yourself | Staying Connected A caregiver is a person who provides help with daily activities, coordinates healthcare and other services, and provides emotional and other types of support for a patient with cancer. The main caregiver is usually, but not always, a spouse, a close family member, or a close friend. There are various kinds of caregivers, and each can provide a different type of care. 1 For example, a neighbor who visits a few times a week or takes the patient out to lunch or a movie is a caregiver.   Being the main caregiver for a loved one with cancer is challenging. 1 Main caregivers sometimes put their own needs and feelings aside while practicing patience and providing emotional support in the form of understanding and encouragement. As a main caregiver, you also may be taking on new roles, including helping with daily needs such as meals and personal care and taking over tasks that formerly were your loved one’s responsibilities. Doing all of these things may consume all of your emotional and physical energy. 2 COPING Dealing with cancer can be an emotional roller coaster. Caregivers also may experience a range of various feelings, just as patients do: anger, guilt, grief, hopelessness, loneliness, and depression. As a caregiver, you also can use the information in Section 11 on coping with your feelings and developing a support system. 1 The caregiver also may have very different emotions from those of the patient. As a caregiver you may feel that you must be perfect – but no one is perfect. You may feel hurt when the person you are caring for takes anger out on you. Although the anger is not about you, it is difficult not to take it personally. You need to forgive yourself and your loved one, learn from the situation, continue to do the best that you can, and go on. 1 CARING FOR YOURSELF As a caregiver, you probably have been putting your needs last, because they do not seem important right now. After dealing with everything else, you cannot find time for yourself. You may even feel guilty about getting enjoyment from anything at all. The combined pressures of all of these new responsibilities, of having to change your habits and routines, and of the worry about what is happening or what may happen can result in burnout ( Boxes 12-1 to 12-3 ). 1 Box 12-1 AVOIDING BURNOUT  2 Here are some ways to avoid burnout: Do not make all activities revolve around the disease Seek support from others in the same situation Give yourself permission for quality time alone Provide time for yourself to grieve for losses that illness brings Maintain the patient’s independence by not insisting on doing everything Become empowered by learning about pancreatic cancer Box 12-2 RECOGNIZING BURNOUT  3 Here are some signs of burnout: Exhaustion Inability to sleep through the night, or difficulty getting up in the morning Loss of interest in friends who or activities that once brought you pleasure Feelings of guilt about not doing enough or not wanting to do more Being easily irritated by people who tell you to “take care of yourself” You are sure that nothing good is going to happen ever again Here are some ways that you can recharge yourself mentally and emotionally so that you can be a better caregiver 1: Stay connected with your friends and community Give yourself an outlet for your feelings: talk with a friend, spend time alone Join a local support group; support groups are also available by phone and online Participate in an Internet chat room or discussion board such as the Johns Hopkins Pancreatic Cancer Discussion Board Talk with a counselor Find time for relaxation: take at least 15 minutes each day to do something you find relaxing Do something small for yourself each day: take a moment to think of something positive, to laugh, to be thankful Write in a journal Here are some ways to take care of yourself physically 1: Make sure to keep up with your healthcare checkups Take any medicines that have been prescribed for you Eat healthy meals Get sufficient rest and exercise Avoid the use of alcohol in an attempt to cope with stress Box 12-3 DEALING WITH BURNOUT  3 Here are some ways to deal with burnout: Recognize the importance of your own health and welfare Do not feel guilty for thinking of yourself Learn to delegate responsibilities Insist other family members provide their fair share; they may not know they are not doing so Ask friends and neighbors for any help they can provide; people often are happy to be asked Recognize that you have limits, and forgive yourself for not being perfect practice stress reduction techniques, even something as simple as relaxing in a hot bath Distract yourself: have a good laugh, go out to dinner, relax and unwind Recognize and deal with depression STAYING CONNECTED WITH YOUR LOVED ONE Staying connected with a loved one in a normal, healthy way may be difficult. To help stay connected, try to view this person as before. Do something fun together, or celebrate a special occasion. Cherish your loved one’s presence in the here and now. Help your loved one create a special physical space for health and healing, and make it a special place for both of you. Touch and hug your loved one. 2 Thinking of your relationship with your loved one as being a “team effort” may help you stay connected, reduce stress, and improve communication. It also may help your loved one feel more in control of some situations. For example, you can discuss some of the following topics 2: In the past what other difficult times have we gone through together? How did we handle the problem? Which family and healthcare tasks do each of us prefer doing? Are there any tasks that we can share? What are the ways we can help each other? What activities can we do together to have fun and forget about cancer? Talking about cancer with your loved one is an excellent way to stay connected, but it may be difficult. When talking about the disease use the same words that your loved one uses, such as “my disease” and not “pancreatic cancer.” Sometimes the best way to communicate with anyone is just to listen in a nonjudgmental way. However, there are ways of approaching a difficult topic that needs to be discussed 2: Practice what you will say in advance Find a quiet time to talk First ask if it is OK to talk Explain why you want to talk Speak from your heart Allow time for your loved one to talk Do not feel the need to finalize everything after only one talk The most important thing you may be able to do is just listen CAREGIVING AND THE HEALTHCARE TEAM During the course of your loved one’s illness, you will interact with many members of the healthcare team. Make the best use of your time and their time by being prepared. 2 For example 2: Keep a file or notebook with all of the patient’s medical information, and bring it with you to all doctor appointments; it should include the following: Current medications and dosages Allergies Test results and the dates they were performed Past treatments and the dates they were given The names, addresses, and phone numbers of the patient’s doctors The names of the different members of your healthcare team and the roles they play Write down all questions you have before appointments Call the office ahead of time to make sure that the doctor has the results of any recent tests that have been performed Take notes during appointments so you can remember what was discussed Make sure that all of your questions are answered   Next Page REFERENCES      ! Click reference number to return to text. 1. National Cancer Institute. When someone you love is being treated for cancer. http://cancer.gov/cancertopics/When- Someone-You-Love-Is-Treated. Accessed April 24, 2007. 2. CancerConsultants.com. Support and Resources. Caregivers. http://patient. cancerconsultants.com/Resources.aspx? TierId=1084&LinkId=&DocumentId= 18842. Accessed April 17, 2007. 3. Eyre HJ, Lange DP, Morris LB. Informed Decisions: The Complete Book of Cancer Diagnosis, Treatment, and Recovery. 2nd ed. American Cancer Society–Health Content Products. Atlanta, GA; 2002.

Reprinted with permission from "Understanding Pancreatic Cancer", a publication of The Lustgarten Foundation for Pancreatic Cancer Research