Being an Effective Caregiver
By Susan K. Stewart, Director Blood and Marrow Transplant Information Network (BMT InfoNet) www.bmtinfonet.org. Adapted from Bone Marrow and Blood Stem Cell Transplants: A Guide for Patients
A bone marrow or cord blood transplant (also called BMT) is a very difficult experience for patients and family members alike. As everyone's attention focuses on saving the patient's life, the needs of one of the patient's most important partners - the family member or friend who is the primary caregiver - are often underestimated.
Caring for a transplant patient is physically challenging and emotionally draining. Watching as a loved one undergoes difficult medical procedures taxes even the healthiest and most optimistic caregiver. Helping other family members cope with the experience adds to the burden.
Most caregivers agree on one thing: you must take care of yourself to be a good giver of care. Here are some tips from other caregivers on how to cope while caring for a recovering transplant patient:
Set up a support system for YOU.
Don't get so caught up worrying about everyone else that you don't deal with your own feelings and fears.
Find someone who is a good listener with whom you can share your feelings. Some caregivers find that a special friend or small circle of friends works well. Others find the families of other transplant patients most helpful. Professional counseling, talks with clergy and support groups are also good avenues of support.
Take time to recharge.
You can't be a good caregiver if you are exhausted or sick. Eat well-balanced meals, exercise, get enough sleep and take some time for yourself. Whether you choose to go for a walk, take in a movie or visit with friends, taking time for yourself is essential.
Learn to delegate and accept help.
Family members and friends often truly want to help but don't know what would be most appreciated. Figure out what people are good at and give them jobs that suit their temperament and skills. Some might shop for you. Others might care for your children. If someone is willing to cook for you, make it easy for them by telling them which foods your family likes and dislikes. Developing a strong network of support before the transplant will enable you to better focus your energies on the patient's needs during and after treatment.
For an easy online tool to organize a community of family and friends who want to help, see Lotsa Helping Hands: http://www.marrow.lotsahelpinghands.com. With this private group Web calendar, people can see what help is needed and when, so everyone can pitch in to help make your life run more smoothly.
Set up a system to update people.
It helps to have a way to update people about the patient's progress without having to talk to each person individually. Daily updates on a telephone answering machine, e-mails to a large mailing list or having a friend communicate the patient's progress to others works well. You can also easily create a free Web page to keep friends and family members posted about the patient's progress at www.caringbridge.org.
Keep a diary and carry it with you.
Write down EVERYTHING - names, phone numbers, maps, instructions, questions, etc. One day begins to blend into the next and remembering details will be hard. If more than one person will be caring for the patient, leaving a diary or tape recorder in the patient's room where everyone can record the day's events can help keep everyone informed.
Be politely assertive.
Make sure that your questions are answered by the medical team and that the patient's needs are being met. If you cannot be available when the patient's physician visits each day, arrange a time when you can talk with the doctor and have your questions addressed. Don't be afraid to pursue a question until you get a satisfactory answer.
Be flexible and patient.
Few things happen exactly as expected. Complications may occur, and recovery sometimes takes longer than expected. Once home, the patient may need to be readmitted to the hospital for a brief period of time to handle an infection or other complication. Plan for delays, setbacks and surprises.
Take things one day at a time.
Or even take things one hour at a time, if necessary. Try not to worry about things that may or may not happen down the road. Focus on those things you can control today and measure progress in small increments.
Plan for the long haul.
Caregiving continues long after a patient leaves the hospital or clinic. In the first weeks and months after the patient returns home, life will not be normal. The caregiver will need to administer medications, clean catheters and monitor the patient for infection and other complications. Giving care at home is often more exhausting than caring for the patient while in the hospital, and many caregivers experience burn-out during this time.
Family members and friends may not understand that the difficulties don't end once the patient returns home. It helps to let friends and family members know in advance that you will continue to need their help once you return home. Although some may not be as understanding as you would like, others will be glad for the opportunity to help and thankful that you are explicit about what you need.
Try to maintain a sense of humor and a positive outlook.
Although a marrow or cord blood transplant is not a joking matter, many caregivers say that maintaining a sense of humor, despite the difficulties, helped them and the patient cope. "Pray, cry and talk when you need to, but also keep a positive attitude," advises a former caregiver. "During my husband's recovery, we played a lot of cards and talked about all the fun we'd had and all the fun we were going to have once he was well again."
Although being a caregiver for a transplant patient can be an overwhelming experience, many caregivers have found some good in the experience as well. "Aside from the fact that my daughter is alive, it helped everyone think about what was important in life," says one caregiver.
Perhaps this three-and-a-half-year-old survivor said it best to his mom about the importance of caregiving:
"On the first anniversary of his transplant, I told him it was time to visit the clinic again and he asked 'Why?' I said, 'Everyone who took care of you wants to see you and besides, we should thank the doctors for making you better.' He looked at me and said, 'No, Mommy, you made me better.'"
This article is adapted from the book Bone Marrow and Blood Stem Cell Transplants: A Guide for Patients, by Susan K. Stewart, published by BMT InfoNet, 2002. You can learn more about the book and order a copy at BMT InfoNet's Web site.
SELF CARE Reading List for Caregivers
Across the Chasm: A Caregiver's Story, by Naomi Zikmund-Fisher, 2002.
This is the diary of a caregiver/spouse's and patient's experience with an unrelated donor bone marrow transplant. Across the Chasm details the day-to-day physical and emotional effects of a loved one's bone marrow transplant. Appropriate for late teens and adults. This book can be ordered at www.bmtinfonet.org. Cost is $8.95 plus shipping and handling.
Adult Leukemia: A Comprehensive Guide for Patients and Families, by Barbara Lackritz, 1999.
This book provides medical information about leukemias, medical tests and treatment options. Patients' experiences, in their own words, are written throughout the book. Appropriate for teens to adults. Cost is $29.95 plus shipping and handling.
Bone Marrow and Blood Stem Cell Transplants: A Guide for Patients, by Susan K. Stewart, 2002.
This guide offers patients and families a clearly written explanation of unrelated or related donor transplants. The information provided helps patient, family, and donor throughout the transplant experience and the after-transplant period. This book can be ordered at www.bmtinfonet.org. Appropriate for teens through adults. Cost is $8.95 plus shipping and handling.
Caregivers' Guide for Bone Marrow/Stem Cell Transplant: Practical Perspectives, by National Bone Marrow Transplant Link (nbmtLINK), 2003.
This booklet offers practical suggestions to caregivers from people who have played the role. Appropriate for teens through adults. The booklet can be ordered for $12, or the entire contents can be read online or downloaded and printed at www.nbmtlink.org.
Daily Comforts for Caregivers, by Pat Samples, 1999.
Offers daily meditations for caregivers of acutely or chronically ill loved ones. Appropriate for ages 15 to adult. Available through www.fairviewpress.org. Cost is $10.95 plus shipping and handling.
Lotus in the Fire: The Healing Power of Zen, by Jim Bedard, 1999.
This book is based on the experience of a 42-year-old man with acute myelogenous leukemia, as he journeys through medical treatments and shares the strength he gains from Buddhist meditations. He receives a bone marrow transplant; his sister is his donor. Appropriate for mid-teens to adults. Cost is $11.00 plus shipping and handling.
One Hundred Days: My Unexpected Journey from Doctor to Patient, by David Biro, 1999.
This book is written from the patient's perspective. Written in diary format, this patient's transplant experience, along with those of his wife and family, are detailed. Appropriate for teens through adults. Cost is approximately $13.00.
Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill, by Cappy Capossela and Sheila Warnock, 2004.
This handbook gives a step-by-step model for how to organize a group of friends and family members to act as a caregiver team. The book includes guidelines, worksheets and ideas from other caregiver groups. More information about the share-the-care group caregiving model and the book can be found at www.sharethecare.org. Cost is approximately $14.00.
Books can be found at most national book stores. Costs are approximate. Other resources for caregivers are available at www.cancercare.org.