If someone you love has undergone a bone marrow or cord blood transplant, you can be there to help. A caregiver is there to give emotional support and be an advocate for his or her loved one. Every transplant recipient's needs are different. Each caregiver will find his or her own way to meet those needs. What is the same for everyone is that a caregiver plays a vital role in their loved one's treatment and recovery.
Supporting your loved one
As a caregiver, you are an active supporter of your loved one. You may need to be his or her advocate in many areas:
- Protecting the Patient's Health
- Preventing and Treating Complications
- Working with Doctors
- Getting Better, Physically and Emotionally
- Dealing with Financial Issues
Being an advocate for the patient
As a caregiver, you can be an advocate - or an active supporter - for your loved one. Some transplant recipients act as good advocates for themselves. Others are too ill or overwhelmed to do so. Even if your loved one is a good self-advocate, he or she may need your help and support at times. The keys to being a good advocate are gathering information and talking to the health care team.
Learning about the disease and treatment plan
- Go along on doctor visits and take notes to help you remember what the doctor says.
- Ask your health care team to explain the meaning of test results and the purpose of drugs and other treatments.
- If it helps, ask if you can record your visits on a tape recorder so you can listen to the information again later. Ask if additional information or resources are available.
- Ask if information is available in different formats - printed materials, audio recordings, video tapes, DVDs, etc.
- Organize your information in a notebook to help you remember the details.
- Contact organizations that help patients with the same disease - you can find contact information for many helpful organizations in the searchable directory of organizations.
- Check your local library and/or search the Internet for information on treatment options.
- You may be able to find others to talk to through organizations that help patients with similar diseases, such as the Leukemia and Lymphoma Society or one of the other organizations listed in the searchable directory.
- Join a support group online. You may find an appropriate e-mail support group (or mailing list) at the Association of Cancer Online Resources (ACOR).
- For tips on how patients can talk to their doctors and questions you may want to ask, see Discussing Options with Your Doctor.
Your loved one plays a role in his or her own recovery
Once a course of treatment has been chosen, your loved one will need to give the treatment a chance to work. This means following instructions the doctor gives, such as when to take medications. Make sure you understand what needs to be done. Some treatments depend on following instructions closely. For example, some drugs need to be taken at exact times or they will not work. You can help keep track of medications and be sure instructions are followed.
To be an effective caregiver, you will also need to take care of yourself and use your energy where it will help your loved one the most.