When you act as the caregiver for someone who is having a bone marrow or cord blood transplant (also called a BMT), you become an essential member of the health care team.
Being an advocate for the patient
As a caregiver, you can be an advocate — or an active supporter — for the patient. Some patients act as good advocates for themselves. Others are too ill or overwhelmed to do so. Even a patient who is a good self-advocate needs your help and support, sometimes more than others. The keys to being a good advocate are gathering information and talking to the health care team.
Learning about the disease and treatment plan
- Get information from the patient's doctors and other sources — for ideas, see Working with Your Health Care Team.
- Ask the health care team to explain the meaning of test results and the purpose of drugs and other treatments given to the patient.
- Organize information about the patient's treatment in a notebook to help you remember the details from one day to the next.
Talking with the health care team
Because you know your loved one well, you can give the health care team information that will help them provide better treatment. You may also recognize early signs of pain or other changes before the nurses or doctors can.
- Help the doctors understand the patient's treatment goals and needs.
- Report any new symptoms or pain to the health care team. Some patients do not want to complain about minor pains or symptoms, but it is important to treat pain and other problems early before they get worse.
Supporting the patient in the hospital
Because you will spend a lot of time with your loved one in the hospital, you can learn the routines.
- Find out when the doctors make their daily rounds so you can be there to ask questions and hear about any changes to the patient's care.
- Keep track of the patient's care plan of drugs and other treatments. Ask questions if you see any of the patient's care done differently than usual. You are with the patient every day, but the health care team changes — nurses work in shifts, and in some transplant centers, the doctor on duty changes as well.
Caring for the patient at home
When your loved one returns home, he or she may still need a lot of care. Your hospital may offer a class to teach you the skills you need, or the nurses will show you. You should also find out how your transplant center wants you to handle any questions or emergencies that might arise. Depending on how well the patient is doing, some care you may give includes:
- Being with the patient all the time, in case a sudden complication develops and he or she needs help.
- Watching the patient for new symptoms or problems and reporting them to the doctor. This may include taking the patient's temperature each day.
- Making sure the patient takes the right drugs at the right times.
- Flushing and changing dressings on the patient's central line.
- Preparing food and encouraging the patient to eat. Some patients are not very hungry, but they need to eat to gain strength. There may also be rules about what is safe to eat. For more information, see Healthy Eating.
- Taking the patient to appointments at the hospital or clinic.
- Helping to protect the patient from infections. For information, see Preparing Your Home for Your Recovery and Staying Healthy.
Along with these health care tasks, your emotional support of the patient is very important. At the same time, you may be managing the household and doing other things the patient used to do. Remember it is important to take care of yourself, too.