Helping your loved one prepare for transplant
When you become a caregiver for a patient, you also become an important member of the health care team and an advocate for the patient. While 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. Prior to transplant, you will have a role in supporting your loved one’s medical care, financial planning and emotional health.
Partner with the health care team
"My role as a caregiver during the conditioning stage was just to be there for support. I mean there's nothing physically I could have done for him, because he was getting lots of support from the doctors and nurses, but just to be there and have a shoulder to lean on and to talk to about the whole process."
As a caregiver you will play an active role in helping your loved one follow the treatment plan and make informed medical decisions along the way. In order to help with these responsibilities you may want to:
- Request information and resources about bone marrow transplant and other treatment options from the patient’s doctors.
- Ask the health care team to explain the meaning of test results and the purpose of medicines and other treatments.
- Organize information about the patient’s treatment in a notebook to help you remember the details from one day to the next.
- 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 during the hospital stay.
Good communication with the health care team will help your loved one receive the best possible treatment. You can help the doctors understand your loved one’s treatment goals and needs. Sometimes you may also need to speak to doctors on behalf of the patient because the patient is too tired or ill.
Provide financial planning help
Talk with other bone marrow transplant caregivers about their experiences. Be The Match Peer Connect Program puts you in touch with other caregivers to provide support and guidance to one another.
Your loved one may need your help planning how to cover the costs of transplant. Some things to think about include:
- What costs will be covered by insurance and what will need to be covered by the patient.
- Sources of financial assistance, if needed.
- Fundraising or asking others to do so, if needed.
- Time away from work for you and your loved one. Talk to your employer and ask about taking an extended leave (Family Medical Leave Act) and keeping your health insurance and other benefits.
- Making sure household bills are paid on time.
Give and seek emotional support
Your loved one may be experiencing many emotions including hope, fear, excitement and anxiety. As a caregiver, the most important thing you can do is be there to listen, to talk or simply be by your loved one’s side. If the patient feels well enough in the days or weeks before the transplant, spend time together doing things you both like to do. Encourage the patient to have fun with friends and family. Think of this time as a chance to create more good memories that you can talk about on days when the patient is feeling ill.
Resources for you
Be The Match®patient services coordinators can also answer your questions and provide support and education to help you and your loved one navigate your transplant journey.