If you have a loved one with cancer, you may automatically (or by choice) be placed in the role of advocate. If so, what can you do to be sure he/she gets the best treatments and care?
Your loved one will probably be going through all types of emotions and physical hardships, making your help invaluable as he/she fights to recover. We’ve gathered a few tips here to help make your journey a little easier to navigate. Try not to be overwhelmed as you review this list. Remember to take things one step at a time, and to do your best to continue to exercise, eat right, and get enough sleep. Maintaining your own health is equally as important during this difficult time.
1. Become informed. This may seem like a no-brainer, but the more you know about your loved one’s condition the more you’ll be able to ask the right questions and ensure she is getting the best care. Read about the disease, the treatment options, the side effects, and any possible experimental procedures if necessary. To avoid becoming overloaded with this task, set aside a certain time of day for research, like one hour after dinner, for example, and keep notes of what you find.
2. Create a folder. Writes Meg, a caregiver for her parents, “As an advocate and a caretaker for my parents when they were diagnosed with cancer, I quickly learned the importance of keeping detailed notes and important paperwork with me at all times. Without a moment’s notice, I found myself needing to recite a list of complicated medication names, which were ever changing, along with dosage instructions and allergy information to a member of our healthcare team.”
Purchase a 3-ring binder or other type of folder in which you can place lists, paperwork, and other information, then keep it with you for doctor and pharmacy visits. Use a dividing system to separate insurance cards and contacts, medical team contacts/business cards, legal documents (like Durable Power of Attorney), a calendar of appointments, medical history, medications, lab test results, and medical imaging results. Having this folder with you will prevent a lot of headaches.
3. Put legal documents in place. It may seem premature or unnecessary, but if you can talk to your loved one and put legal documents in place, it will save you a lot of stress and heartache should you face a difficult medical situation in the future. What if your loved one can’t make decisions for himself? You will need the Durable Power of Attorney to make decisions for him/her. Talk to your doctor about the forms you need, then see a lawyer or go onto a legal website to properly fill them out.
4. Prepare for doctor’s visits. When your loved one needs to see her doctor, you can help her prepare by making sure all necessary documents are in your folder, and by creating a list of questions to be asked. If you need some ideas on important questions, check here. Once you’re at the appointment, take notes, help your loved one communicate about her condition, ask questions, and make sure you understand everything. Once again-don’t be afraid to speak up and ask questions!
5. Communicate with friends and family. Your loved one will have many people concerned for him, and keeping those people in the loop not only keeps you both connected, but opens up opportunities for others to help. Make phone calls, send out group e-mails, and/or use social networks like Facebook and Twitter to alert people to your loved one’s progress or to enlist help with anything you might need. Remember-don’t be afraid to ask. People want to help and you need to be sure you’re not overloading yourself.
6. Help empower your loved one to control pain. If your loved one is in pain, encourage him to speak up, or speak up for him. According to Cancer-Pain.org, “By believing your loved one and validating his or her pain, you empower the person to ask for the help he or she needs.” Don’t assume the doctor or nurse knows about your loved one’s discomfort. Bring up the subject and ask for solutions. If the nurse doesn’t seem able to help, request a meeting with a pain-management specialist.
7. Keep your eyes and ears open. Many healthcare professionals are efficient, but still, mistakes can be made. Sometimes hospitals are understaffed. Nurses may be distracted. Double-check medications, ask questions about procedures, and watch for anything that can cause allergic reactions. Your loved one won’t be able to focus as well during this time, so staying alert for her could save her from additional setbacks.
Have you found techniques that help you fufill your role as advocate? Please share them with us.
Photo courtesy angelamaphone via Flickr.com.
