Caring for Transplant Patients
A transplant is physically challenging and emotionally draining for patients, but it is equally difficult for caregivers. As a caregiver, there are several things that are important to do to help you manage the stress of providing daily care and support to transplant patients.
Set up a separate support system for yourself. Special friends, a spiritual advisor or a mental health counselor are just a few of the most used sources of support during the difficult transplant process.
Keep a diary and carry it with you. Write down everything. So much is said and done during the transplant and recovery that remembering it can be hard. If writing it all down is hard, consider creating a voice diary with a tape recorder or use a mobile recording application for a cell phone or 3G device. You can also use a diary just for you, as a place to write down your thoughts and feelings.
Take time to recharge yourself. Try to eat well-balanced meals, get some exercise and get enough sleep. Carve out some alone time to get your thoughts off the job at hand. It's OK to read a book, watch a movie or go for a walk. It's good to take mini-breaks throughout the day.
Learn to accept help. This is one of the most common mistakes: caregivers think they can or need to do it all by themselves. Don’t fall into that trap. Friends and family want to help. Providing them with concrete suggestions on how to do so can provide you with some relief and make them feel useful.
Set up a system to update people about the patient's progress. Everyone who knows you or the patient will have questions such as “how is it going?” Consider creating a free personal web site at CaringBridge or on Facebook to keep friends and family informed. Twitter is a good way to send out quick updates. Record a new message on voice mail or your answering machine every few days to let people know how things are going. Having a friend take charge of communicating with well-wishers can relieve you of this task.
Be an advocate for the patient. Ask questions and get answers. Be politely assertive and make sure the patient's needs are being met.
Be flexible and patient. Focus on things you can control and try to let go of things you can’t.
Most importantly, try to maintain a sense of humor and a positive outlook. It’s been said many times, but it is always true: try to take it one day at a time.
If you would like to talk with other people that have served as caregivers, we can help you. BMT InfoNet's Caring Connections program will link you to someone who has been in your shoes. Our books on transplantation also include information about being a caregiver for a transplant patient.
CaringBridge enables you to create a free web site where you can update loved ones on the patient's progress and even upload pictures. It also allows family and friends to send messages of encouragement to you and the patient.
Lotsa Helping Hands is a web site you can use to help organize volunteers.
BMT InfoNet offers two books that describe the caregiving experience: It's Good to Know a Miracle: Dani's Story, which is written from the perspective of parents whose adult child underwent a transplant and Across the Chasm: A Caregiver's Story, which is written from a young spouse's perspective.
National BMT Link offers the book Caregivers' Guide for Bone Marrow/Stem Cell transplant. The Be the Match has additional information about caregiving on its web site. Our books have additional information about caring for a transplant patient.