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For caregivers

Caregivers are often real-life superheroes when it comes to caring for their loved one after stem cell transplant.

Once home, you’re the eyes and ears of the care team—managing medicines, watching for signs of infection or graft-versus-host disease (GVHD), and even performing some medical care. You play an irreplaceable role in advocating for your loved one’s needs when they can’t do it for themselves. And you provide the emotional support, compassion, and encouragement every stem cell transplant patient needs to move forward.

In fact, many transplant centers won’t even approve a patient for the procedure without assurance that they have a committed full-time caregiver. It’s an essential and incredible act of love and commitment.

Being a caregiver can be rewarding, but it is no easy task. And if your loved one develops graft-versus-host disease (GVHD) after their transplant, it can be an even longer and more challenging road for everyone involved. There are two essential things every caregiver must do to be successful for the long haul.

  • You must take care of yourself
    That means physically, mentally, and emotionally. Stay connected. And be sure to devote time for the things that help you maintain your health, energy, and can-do spirit. It will benefit everyone.
  • You must ask for and accept help
    Many of your community of friends and family will offer to help. So reach out and accept it! Tell them exactly what you need. And push away any guilt. It can get easier with practice.

Take advantage of the caregiver support services that are available through your transplant center for every stage of your transplant journey. Or browse this wide array of other support resources that are available on behalf of several advocacy groups that work to support patients, caregivers, and their families.

Image of Benton B.
The caregiver’s responsibility is probably as important as the medical team. My partner was there for every appointment, she got me in the hospital, out of the hospital, and it was all her those first 100 days home and beyond. When I talk to people now who are facing a stem cell transplant, I tell them I can’t emphasize enough how important that devoted caregiver is.

Benton B.

2018 transplant recipient

Resources for caregivers

Be The Match®

Offers one-on-one sessions with a trained professional, topic-based phone support groups, and a Peer Connect program than can arrange phone calls with a trained volunteer who’s “been there” with caring for someone after stem cell transplant.

Cancercare®

Offers individual and support group counseling by a staff of professional oncology social workers. Counseling available in English or Spanish.

Caring Connections

Matches patients and caregivers with others who’ve been through stem cell/bone marrow transplant and can provide support. Sponsored by BMT InfoNet.

Caregiver Action Network

National organization dedicated to supporting and advocating for caregivers’ quality of life. Offers an online discussion forum, helpful advice, and can connect caregivers to support and resources in their areas.

Peer Support on Call (Phone: 800-546-5268)

Free service from the National Bone Marrow Transplant Link offering one-on-one phone support with trained peer support volunteers for caregivers and others after transplant.

Smart Patients GVHD Community

An online support group for patients and caregivers dealing with GVHD. Members share help, advice, and information about their experiences with the disease and treatments.

Well Spouse Association

Connects you with others caring for chronically ill spouses or life partners. Find local in-person support groups as well as phone support, online discussion forums, peer mentors, respite weekends, and more.

Be The Match Caregiver Toolkit®

This Caregiver’s Companion series provides useful tips and advice on dealing with the stress and details of managing someone’s care long-term (specific chapters can be downloaded from the site, in English and Spanish). Upon enrollment, the caregiver receives the Companion Toolkit and may take advantage of personalized coaching sessions to provide individualized support.

GVHD Caregivers: Building Resilience for the Road to Recovery

Bone Marrow Transplant Information Network
A health psychologist shares advice on ways to cope and build resilience as a caregiver for someone affected by GVHD.

Lunch & Learn Programs

National Bone Marrow Transplant Link
Free monthly call-in event and library of recorded podcasts featuring stem cell transplant patients, caregivers, and experts in the field sharing practical advice and insights on a wide variety of transplant-related topics.

Marrow Masters Podcast Series

Season 4: Caregiver Perspective on the Bone Marrow/Stem Cell Journey
An 8-episode series featuring caregivers’ stories and insights. The site features a wide array of podcasts and webinars on issues related to the transplant journey and GVHD.

The New Normal

A multi-part Emmy-awared winning film series, focusing on the stories of various stem cell/bone marrow transplant survivors and their caregivers, some discussing their experiences with GVHD. Produced by National Bone Marrow Transplant Link.

Today’s Caregiver

Information, support, and tips for people caring for loved ones with a wide array of health challenges. Includes a searchable database of local caregiver resources and support groups.

FOR RALLYING HELP AND SUPPORT

CaringBridge

Lets you create a personal webpage for sharing health updates and rallying support from friends and family.

Lotsa Helping Hands

Lets you organize volunteers by creating a personalized calendar for specific needs like meal preparation, chores, and more.

FOR STAYING ORGANIZED

Caregiver Workbook

Includes a downloadable guide and worksheets for staying organized as a caregiver for blood cancer patients and others. From the Leukemia & Lymphoma Society.

CareZone

Free mobile app for organizing and tracking medicines and health information.

MyMedSchedule® Plus

Free online and mobile app for tracking medicines.

ARCH National Respite Network and Resource Center

Online service to learn about and locate local respite care services, which provide planned or emergency care for adults or children and temporary relief for caregivers.

Family Caregiver Alliance

Offers a searchable Services by State database that lets caregivers find respite care, resources, and other information and services available in their area. Also includes a robust list of classes, webinars, and support groups in English and Spanish.

Caregivers’ Guide for Bone Marrow/Stem Cell Transplant

This book, published by the National Bone Marrow Transplant Link, includes personal stories and advice from people who’ve cared for spouses, children, and other loved ones who’ve undergone stem cell transplant.

Stories of Hope

The Aplastic Anemia and MDS International Foundation offers this online collection of personal stories from patients, parents, spouses, and other family who are living with these and related illnesses, such as GVHD.

Voices of Hope and Healing for Bone Marrow/Stem Cell Transplant

Book of inspirational personal stories, poems, and practical advice for stem-cell transplant survivors, patients, and families. Published by the National Bone Marrow Transplant Link.

Incyte Corporation is not affiliated with these organizations but may have provided funding for some of their educational programs. This is not a complete list of organizations within the GVHD community and should not be considered an endorsement by Incyte of any particular organization listed.