In an 11 month period, I lost my mother to breast cancer and both my mother-in-law and her mother to lung cancer.
While my role differed in each situation, here’s what I learned about how to practically love and support someone living with cancer and their caretaker.
If you are the primary caretaker:
1. Keep a Medical Notebook that includes sections for
- Emergency & Doctor Phone Numbers
- Physician’s Notes (all doctors, not just cancer docs)
- Blood Tests
- X-ray reports
- CT scans
- Pathology reports
- Medications including the details of dose, when dose changed, and who prescribed it for what purpose.
- Patient complaints and questions.
As the battle stretched into years, we found having too many notes in too many places created major problems. The lag time for results of a test to get transcribed, sent to all the doctors and into all the medical charts seemed to increase. When something about Mom’s situation changed, often the doctor who needed to make a decision didn’t have the necessary information. We asked for a copy of every test result at the time of visit and filed it in our notebook. Then we took that notebook to every doctor visit.
Not only did the doctors frequently thank us for having complete information, we were able to compare new results with past data to keep changes in context. We could see for example that blood antigens were this high a year ago.
Keeping a notebook may sound like a lot of work but became easier with time. Nurses became our allies. They would meet us at an appointment with a copy of lab reports because they rapidly saw it helped everybody.
2. Find one generalist and insist he/she take primary responsibility for your loved ones care.
If nothing else, one doctor needs to review ALL medications prescribed to check for conflicts, overlap and side effects. Our cancer center required regular meetings of all doctors treating the patient but not all cancer centers do that. You need one medical professional (most likely your Family Physician) keeping track of the big picture.
3. Keep asking questions until you understand.
At the doctor’s office, if you don’t understand the medical terminology used, ask. Then ask again until you understand. Information is your ally. Other than the patient, the you (the primary caretaker) may be the one constant person present at all meetings with all doctors. Your understanding can be a crucial tool to help the next doctor make a wise decision.
4. Accept help.
Friends and family want and need to help. As one nurse told us: “Do not cheat your friends out of the pleasure of being helpful. Let them assist and help when they seriously offer.”
Enlist a family member or friend to organize volunteers/meals/food, to take phone calls and keep others informed. Sometimes people would say “let me know what I can do,” but my father did not have the time or energy to let them know. Asking for help became another chore.
5. Find a support group of people dealing with the same disease.
Support groups can give you practical advice (e.g. pros & cons of wigs, where to find parking at a specific hospital, etc.) and what to expect from treatment that MDs forget to tell you (e.g. fatigue). We found doctors consistently underestimated the recovery time and other families were much more realistic about the impact of particular treatments.
6. Start a Waiting Tote Bag
Select a tote bag and fill it with magazines, letters, paperwork, bills, etc. to take to appointments for the waiting. Anything that needs to be done and can be done will sitting and waiting. My mother felt better if she could accomplish something during long chemo treatments or waiting room stays.
If you not the primary caretaker:
1. Find out when the patient’s best and worst times are. Help at the worst times. Visit at the best.
Bring a high calorie, nutritious meal at the worst times. Or offer practical support like picking up groceries. Help and the leave.
Visit at the better times. If the patient is too sick or weak to communicate, visit in 2s and 3s so you can carry the conversation. Silence is okay. Being there counts.
If you are far away, write letters or email or cards. Include interesting newspaper articles or jokes which could be put in the Waiting Tote bag.
2. Give the primary caretaker a break.
If you enjoy driving, offer to do some driving to and from appointments. Or offer to sit with the patient so that the caretaker can run errands, shop, attend a support group or go to a movie. Share your talents. A dear friend played her cello for my mother-in-law one afternoon and the “personal concert” brightened her life for weeks. In addition to music, offer to do light cleaning, write thank you notes, give a massage, bring flowers from your garden, bring a movie to watch or a book to read aloud, etc. If you do bring a meal or a baked good, remember to use disposable containers or mark dishes with your name and retrieve your containers.
3. Resist the urge to alert the patient to the latest “miracle drug” or “alternative therapy.”
If you simply must share the news about the latest news report on some miracle drug, tell the caretaker or close family member, not the patient. Or send a note. In our case, my mother had usually already tried and failed with the “latest miracle.” It was depressing to be reminded.
5. Talk about life other than cancer.
The patient needs to remember he/she is a whole person, not a disease. Find ways to need the patient. For example, ask for the patient’s advice on a problem or to tell a story from her family history. The patient needs to feel needed, not just needy. As one of our nurses who worked with terminal patients said: “These people are alive today. Find something for them to enjoy that day.”
6. Finally, give the patient permission to be afraid. My mother explained it like this:
“At this point in my metastatic breast cancer, I am in the care of a wide variety of health care professionals. I have an oncologist who is now the provider with primary responsibility and the coordinator of my care, a pulmonologist because of lung involvement, a radiologist because of the cat scans and bone studies, an exercise physiologist, an infusion team, a family physician, and of course, the care and support of family members.
“I get excellent care from the entire health care team and I know all are concerned and go out of their way to accommodate me. In fact, because of my position at the University Medical Center, I am sure I receive VIP treatment. However, my family physician has played a special role. She is the one member of the team who routinely asks me how I FEEL about the set backs which seem to occur about every four months. She gives me permission to feel, to grieve, to sigh, to cry, to be sad, and to be frightened. Others are more inclined to give me permission to be brave and courageous and tell me that I am an example for others.
“Perhaps the most astounding exchange with my family physician was when I finally found the courage to express concern about the final days before death and how I would handle it. She gave me a sense of peace by saying, ‘Don’t worry, I will be there.’
“I know there is a chance she will not actually be there as she is an academic physician with other responsibilities and she also takes vacations. But those four words ‘I will be there’ took a weight off of my shoulders which had been there from the day I first heard the words, ‘Unfortunately, your breast cancer has returned.’
“You can pretend to care, you can pretend to know, but you cannot pretend to be there.’ My closing take away statement is the following: One person makes a difference and everyone should try.”
Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal. – 2 Corinthians 4:16-18