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A woman and her son sitting on steps, smiling at each other.
Zion, blood stem cell recipient, with his mom, Chim

Caregiver resources and support

Illness and recovery can be as hard on caregivers as it is on transplant patients. Here you’ll find support for you.

What is a caregiver?

A caregiver is someone who provides support and care throughout the blood or marrow transplant (BMT) process. Most transplant centers require patients to have a caregiver.

As a transplant caregiver, you might offer medical, financial or emotional support.

A caregiver can be:

  • A spouse or partner
  • Adult children
  • Brothers or sisters
  • Parents
  • Friends or co-workers

Being a caregiver

A caregiver plays an important role in a transplant patient’s health care and recovery. You will be called on to gather information, talk to doctors, be involved in your loved one’s care and provide support. Knowing how to handle this responsibility is important.

With so much responsibility, being a caregiver can feel overwhelming. It may help to learn what you’ll need to do. You are not alone. Many transplant centers have free classes to teach you about the role. Ask the transplant team what resources are available for you at the center.

Taking care of you

It can be easy for caregivers to forget about their own needs. To be an effective caregiver, it’s very important to take time to care for yourself so you can care for your loved one. Here are a few tips for caregivers to rest and recharge:

  • Take 5–10 minutes every morning and/or evening to be quiet, breathe, meditate or pray. Sit or lie down. Stretch. Gaze out the window. Listen to the sounds of nature.
  • Change your environment. Get up and walk down the hall or go outside.
  • Escape into a chapter of a good book or magazine, even if it’s just for 15 minutes.
  • Turn up your favorite song and sing loudly in the car. 

As a caregiver, I have the right:

  • To take care of myself, to rest when I am tired, to eat well, and to take breaks from caregiving when I need them
  • To recognize the limits of my own endurance and strength
  • To seek help from family, involved parties, and to do the things I enjoy
  • To acknowledge my feelings, whether positive or negative, including frustration, anger, and depression, and to express them constructively
  • To take pride in the valuable work that I do, and to applaud the courage and inventiveness it takes to meet the needs of my care recipient

From IIardo and Rothman, I’ll Take Care of You: A Practical Guide for Family Caregivers

Talk to other caregivers

You may find it helpful to talk with another caregiver who has been through transplant. Our NMDPSM Peer Connect program can put you in touch with a trained volunteer who’s been there. No matter where you’re at in the transplant journey, our caregiver volunteers are available to talk by phone or email. They’re available to listen and share their experience and tips.

Request a connection

Caregiving before transplant

Before transplant, patients need extra help and support. As a caregiver, you have an important role to help and advocate for your loved one.

Doctors, nurses and social workers at the transplant center will help you learn about your role. We also support caregivers with free programs and resources, including one-on-one support.

There are many ways you can support your loved one before transplant.

Helping with medical care

  • Be with your loved one in the hospital or clinic during doctor’s visits to listen and ask questions
  • Ask the doctors to explain treatment choices, test results and medicines
  • Keep track of all treatments in a notebook
  • Talk with your loved one to understand their treatment goals

Managing costs

  • Find out what insurance will pay and what you will need to pay
  • Ask the social worker or financial coordinator about other financial help
  • Help plan how to pay for transplant
  • Make sure household bills are paid on time
  • Help keep health insurance and other benefits active
  • Ask about taking an extended leave from work (Family Medical Leave Act (Opens in a new tab)) for both you and your loved one

Supporting emotional health and well-being

  • Be there to listen, talk or simply be present
  • Show support for your loved one’s feelings
  • Spend time together doing things you both enjoy
  • Help communicate with your support system

Looking back, I wish I would’ve let others help me more. I didn’t realize how much I was holding back until I finally let them in. They wanted to help us so deeply but didn’t know how.

- Kate

Caregiver

Caregiving after transplant

Before leaving the hospital, the transplant team will teach you:

  • How to care for your loved one at home
  • What to do if there’s an emergency
  • Who to contact with questions

I had to be a strong advocate for my husband’s health and care. When my transplant team said I could contact them, I would take them up on it, even emailing in the middle of the night if I had a concern.

- Allison

Caregiver

Transitioning from the hospital to home care

Once you get home from the hospital, one of your most important tasks is to watch for new symptoms or problems and report them to the doctor right away. That’s because waiting to report symptoms could cause serious complications.

You may also need to:

  • Help your loved one take the right medicines at the right times
  • Change dressings on the central line, if it’s still in place
  • Take your loved one to appointments at the hospital or clinic—sometimes on short notice
  • Protect your loved one from infections by cleaning your home and caring for children and pets
  • Cook food safely and help follow any rules about what is safe to eat

Resources for caregivers

This list of websites, brochures and books can help you find support and resources to use during all stages of your caregiving journey. NMDP partners with recognized, third-party organizations in each of the areas listed below.