Your Role as a Caregiver and Advocate
Being a caregiver
- Helping to maintain the household — including cooking (or arranging for food from friends or restaurants), cleaning, childcare, driving, and other tasks.
- Keeping track of medical appointments and the treatment schedule. Keeping a list of all medications, including over-the-counter medications, vitamins, and supplements, for both of you to carry with you at all times.
- Providing reassurance of your continued love. This includes being attentive, affectionate, and patient (treatment for cancer is an emotional roller coaster ride), listening carefully when she wants to talk (and not pressuring her to talk if she doesn’t want to), and assuring her that you will take an active role in her recovery. You are in this together.
- Encouraging her to move forward, one day at a time, with hope and optimism. (Some women question why they got cancer. Cancer is caused by a variety of factors, most still not understood, and it is not helpful for her to feel guilty about what she did or did not do to get cancer).
- Understanding and accepting that cancer is an anxiety filled experience with lots of ups and downs. You may not want to burden her with all your concerns,but be honest about what you are feeling and allow her to be honest with you.
Being an advocate
- Advocating for her with doctors, nurses, and hospital and health insurance company bureaucracies. Ask healthcare professionals to limit their use of medical jargon, to give you enough time to discuss your concerns and ask your questions, and to explain things to you so they are perfectly clear. The new world you have entered speaks a language you may not understand. Do not leave the hospital or doctor’s office until you understand everything that has been said, and do not be afraid to call with follow-up questions.
- Questioning a treatment choice. You and your loved one should be absolutely comfortable and convinced that she is receiving the best possible care. Consider getting a second opinion to feel confident.
- Acting as a go-between with family and friends, screening calls and visits. Tell friends and family what is helpful (such as providing a meal or taking a child for a play date) and what is not (such as late evening calls or unexpected visits).
- Streamlining communications. You can keep family and friends informed and updated with regular contact through emails or special websites.
- Making a list of questions before doctors’ appointments and being sure that the answers are written down.
- Assessing information that you both will likely access on the Internet. While there are many useful sites, there is also a great deal of inaccurate and out-of-date information that can misinform and frighten. Be sure to visit reputable websites, such as those included in this guide. But keep in mind that they contain general information, may not apply in your special situation, and should not replace advice from her doctor.