When a Loved One Has Cancer
15 Tips for Being an Effective Advocate
by Gerri and Brian Monaghan
1 Gather your courage.
Fighting a life-threatening disease is seldom a straight road to success. But with courage, you can get down to the business of making ready for war against a frightening enemy.
2 Understand that advocates come in many forms.
Advocates can be adult children, siblings, parents, friends, and even, perhaps, professionals. If you feel that you and your loved one need more support, try contacting your local hospitals, the American Cancer Society, or whatever health-related entity you need.
3 Don’t let others’ reactions get
Talk back when you need to address thoughtless comments, or just brush them off. But don’t share them with your loved one. Write your comebacks down, if only to vent.
4 Keep an advocate’s notebook.
Record names, dates, and places relevant to your loved one’s healthcare. Keep phone numbers that you need access to on a constant basis. Keep a chronological record of your loved one’s appointments and of what was done for him or her at each one. Write down questions you have before future appointments.
5 Get copies of records.
Ask for a release form and have your loved one sign it, stating that you are authorized to have access to all records. With MRIs and CT scans, you want the scans themselves, not just a written report.
6 Get your loved one together with friends.
Do everything in your power to gather up those people you know will do your loved one good. Who would he or she enjoy seeing and for what activities? If he or she can’t get out, would your loved one enjoy being in contact with them via the Internet?
7 Set short-term goals and rewards.
Have something dangling out in front of your loved one that can provide a positive focus during his or her dark moments. Whether it’s a vacation or the birth of a grandchild or attending an important reunion, giving your loved one something specific to look forward to is so important.
8 Don’t try to control everything.
Remind yourself over and over again that you can do your very best, try your hardest, and still not be able to guarantee a good outcome. Be gentle with yourself. No matter how hard you try, you can’t control everything.
9 Create a stress-free environment.
Make a list of all the things, from handling calls to safeguarding sleep, that you can do to create a relaxing environment for your loved one. Then implement them.
10 Bring the comforts of home.
When your loved one is in the hospital, bring photos of the family, cards made by grandkids, comfy pajamas, a bathrobe, and slippers. Bring a small DVD player, movies, music, and books. If appropriate, bring good food that meets your loved one’s dietary needs.
11 Take care of yourself.
Someone really needs to be looking out for the advocate, and while others can help, the person who can do that best is you, yourself. Take time off, get some exercise, eat well, and give yourself little treats. By taking care of yourself, you can take better care of your loved one.
12 Access community services.
Every hospital or rehabilitation facility has a social worker who can help you get started finding resources in your community that will support your loved one’s recovery. Make a list of them.
13 Celebrate the milestones.
Whether it’s ending a round of chemotherapy or radiation, or reaching any other medical milestone, recognizing the value of these achievements gives your loved one a huge psychological boost. What are your loved one’s milestones? How do you want to celebrate them?
14 Remember, this is not a dress rehearsal.
Don’t be overprotective. Let your loved one live life to the fullest, rather than languishing in the wings, waiting for the curtain to fall. What are those things you can do together to live life to the fullest?
15 Always think in terms of “we.”
Think of yourself as part of a team. As far as it is humanly possible, see your loved one’s fight as your fight; no one (except your loved one with cancer) has a more vested interest in winning the war than you. Jot down a few slogans to help you win the campaign against your opponent, the disease.
♦ ♦ ♦ ♦ ♦
Gerri Monaghan is an advocate for her husband, Brian Monaghan, a stage IV melanoma survivor. This article is adapted from their book When a Loved One Falls Ill: How to Be an Effective Patient Advocate. For more information on Gerri and Brian, including links to purchase their book, visit WhenALovedOneFallsIll.com.
This article was originally published in Coping® with Cancer magazine, July/August 2013.