Editor’s note: Stella is the care partner of Len, a CLL patient. They both participated in the September session of the Patient Café™ that talked about clinical trials. I had asked Stella for some caregiver tips to share, and she proposed the list below.
Being the caregiver of a CLL patient on “watch and wait” is not easy. It requires remaining constantly vigilant to the patient’s physical and emotional health. Below are some coping tips that I learned during my experience as Len’s caregiver:
- Reduce stress by learning as much as you can about your partner’s condition. There are numerous online resources in the way of written materials and videos. Watch and read and learn. You don’t have to try to learn as much as a doctor by any means. There are plenty of sites that focus on patient education that will give you a good idea of the biology of the illness and the treatment options.
- Know yourself and set boundaries for what you can and can’t do. Take care of yourself, live and eat healthy, get plenty of exercise and be sure that you are living your life also. Get a hobby that you enjoy and get plenty of rest.
- You are not alone and do not try to do it all by yourself. Talk to friends and family. Join a support group for caregivers. Get professional help if you feel you need it. Caregiving is a demanding job. Be sure and ask for help.
- Make sure you get your patient to see a specialist. Often the patient feels indebted to the doctor who diagnosed the disease. That doctor may or not be a CLL specialist. Get a second opinion. We have talked to care givers that do not want to upset the diagnosing doctor. Too bad about the doctors feelings this is the life of your loved one. If a doctor is unwilling to work in tandem with a specialist get a new doctor,
- Prepare for doctor appointments. Several days before doctor visits, sit with the patient and talk about the upcoming visit. Discuss what questions to ask of the doctor and of the nurse. Write all questions down in order of importance to the patient and caregiver.
- In discussing which questions to ask, make sure that you ask the patient if it is OK to discuss questions that you think may embarrass the patient. Make sure that you consider the patient’s feelings and offer to discuss how to broach any embarrassing topics. The patient is the keeper of their own health.
- Attend all doctor visits with the patient, take notes and be the patient’s advocate. Ask questions and prompt the patient to ask questions also. Share in the decision-making and make sure the patient’s voice is heard.
Being a caregiver is demanding, but rewarding. It is about sharing feelings and support and helping a loved one to live well with their illness. Your aptitude has a major impact. Stay hopeful: new research is making strides every day.