As a caregiver, you play an important role in helping your loved one get ready for a bone marrow or cord blood transplant (also called a BMT). There are three main areas in which you may be able to help: medical, financial and emotional. Especially if you are caring for your spouse or partner or young child, you may feel responsible for all these areas. It can be a lot to handle. Look for ways to share this responsibility so you have the energy to support your loved one in the ways he or she needs you most.
Preparing to enter the hospital
As you get ready for your loved one to enter the hospital for transplant, you can plan for the tasks to come. Your transplant center may offer a class to help you prepare. For other information to help you plan, see:
If your loved one needs your help planning how to cover the costs of the transplant, some things to think about include:
- Finding out what costs insurance will cover and what it will not.
- Searching for sources of financial assistance, if needed.
- Planning fundraising or asking others to do so, if needed.
- Talking with your employer about the time you will be away from work. Ask about taking an extended leave (Family Medical Leave Act — FMLA), job security and keeping your health insurance and other benefits.
- Planning a system to pay household bills on time while you are thinking about other things.
- Planning for the future — Will your loved one be able to return to his or her old job after recovery?
For more help with financial planning, see Planning for Transplant Costs.
Dealing with fears and getting support
When your loved one is scheduled to have a bone marrow or cord blood transplant, you and the patient may feel some pressure has been lifted:
- The choice to go to transplant has been made, perhaps after many questions and talking to different doctors.
- A matching donor or cord blood unit has been found (if the transplant will use donated cells).
However, it is normal to feel anxious. A transplant is an intense treatment. There are risks ahead for the patient. He or she may have fears of the treatment, the hospital stay, transplant complications or even dying. Some patients want to face these fears by completing a will, setting up advance directives and making other arrangements. Being prepared for the worst can help them set their worries aside and go forward with a positive outlook. Listening and talking with your loved one is an important caregiving task right now. You can also tell family and friends what kind of support the patient needs. Let them know when the patient needs company or does not feel up to having visitors.
At the same time, you will be dealing with your own fears. You may be able to talk about some of your feelings with the patient. Sharing your feelings with each other can help keep your relationship strong. However, you will also need other people to talk to — a friend or family member, other transplant caregivers or a professional counselor.
- Your loved one's transplant center may be able to put you in touch with a local support group and/or with other transplant caregivers.
- Join a support group online. One possibility is BMT-Talk, a large support group of transplant patients and caregivers at all stages of the transplant process. Join at http://www.acor.org/index.html. (Look for BMT-Talk in the Mailing Lists section of the site.)
- Get connected with another caregiver through the Blood & Marrow Transplant Information Network (BMT InfoNet) — http://www.bmtinfonet.org (see Tips for Family Caregivers in the Patient and Families tab).
Making good memories
If the patient feels well enough, spend time together doing things you both like to do. Encourage him or her to have fun with friends and family, to enjoy good meals and special treats. After the transplant, he or she may feel too ill or tired to do these things for a long time.
Having fun and laughing together can make you both feel stronger and more ready for the treatment. If you have a few days or weeks before the transplant, think of this time as a chance to create more good memories. Later you can talk about the good times on days the patient is feeling ill.