If someone you love is undergoing a bone marrow or cord blood transplant (also called a BMT), you may feel you have been thrown into a new and sometimes frightening world of medical terms, test results and treatment choices. You will be called on to gather information, talk to doctors, stay by your loved one's side for hours and support him or her in many other ways. In other words, you are serving as a transplant caregiver.
Each transplant patient's needs are different. Each transplant 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 the patient's treatment and recovery. Because a caregiver is so important, most transplant centers require a patient to have a caregiver to help them through the transplant process.
Learn what to expect
The job of being a caregiver can seem overwhelming. It helps if you know what you will need to do.
- Find out what the hospital expects of you. Many transplant centers have classes to help caregivers learn what to do.
- Talk to the transplant patient about what he or she wants from you. For example, some patients want someone else to take charge of talking to doctors and making medical choices. Other patients mostly want emotional support.
Act as an advocate for the patient
As a caregiver, you are an advocate for the patient. To be an advocate is to be an active supporter of the patient. You may need to be his or her advocate in many areas:
- Medical — As an active part of the health care team, you can gather information, talk to doctors and care for the patient during recovery.
- Financial — You can talk to the insurance company and manage transplant costs and daily household finances.
- Emotional and social — You can be there to listen to and support the patient. You can also keep family and friends informed and involved.
Try to share some of this work with others if you can. Even if you are the main caregiver in all these areas, try to find tasks to delegate to others. To be an effective caregiver, you will need to take care of yourself and use your energy where it will help the patient the most.
Share the caregiving role
Most often, one person acts as the transplant patient's main caregiver. Sometimes, no one is able to play this role full time. Instead, a group of people can work together as caregivers. When a group shares the caregiving role, organization and communication are keys to success.
- For a free, easy online tool to organize a community of family and friends who want to help, see Lotsa Helping Hands: http://www.marrow.lotsahelpinghands.com. With this private group Web calendar, people can see what help is needed and when, so everyone can pitch in to help make the transplant patient's life run more smoothly.
- For one model of a way to organize a caregiving team, see www.sharethecare.org.
Expect your role to change over time
The patient's needs will change as he or she moves from diagnosis through the transplant and on through recovery. Knowing ahead of time that your role will change may help you through these transitions:
Each patient and caregiver is different. Keep talking to your loved one to learn what he or she needs most at each stage of the transplant process.