By Myra Jacobs and Mary Horowitz, MD

At one time or another, most people will have to rely on someone else for help. This reliance is especially true in the case of bone marrow/stem transplant (BMT) patients and their family, friends, and others who are enlisted into the all-important caregiver role.

Patients duly receive significant medical attention and emotional support because a BMT is a major life-changing process. But BMT caregivers perform a necessary and pivotal role in the process and often fall into the shadows and become like "invisible patients" themselves. They have needs that parallel the BMT patient in terms of encouragement, education, and support.

Because of these needs, publishing Caregivers’ Guide for Bone Marrow/Stem Cell Transplant, Practical Perspectives became imperative. Since its founding in 1992, the National Bone Marrow Transplant Link (nbmtLink) has had the opportunity to work with a host of remarkable people who filled caregiver shoes.
Early on, we were inspired by stories of BMT caregivers that demonstrated incredible spirit, dedication, and perseverance. We asked ourselves how the nbmtLink could address the unmet needs of BMT caregivers.

It is well-known that in an environment of increasing outpatient care, the caregiver’s responsibilities become closely woven into the BMT process itself. In addition, the healthcare team actually relies upon the caregiver to provide services for the patient.

After much observation and discussion, we concluded that the creation of a special book was needed. By focusing on various points of view, Caregivers’ Guide would offer insights into the BMT caregiver role while affirming its importance.

In reality, caring for someone having a BMT is a unique commitment requiring extraordinary physical and emotional effort. The primary medical focus, of course, is directly on the patient, the hope for a positive treatment outcome. However, like the patient, the challenge of a BMT for the caregiver becomes life changing as well.

BMT caregiving, depending on the type of transplant, may consume one’s daily living for an extended time. It is not a casual responsibility. It is a serious and ongoing promise. BMT caregivers may at once wear the hat of coach, nurse, nutritionist, companion, aid, driver, administrative assistant, spiritual counselor, advocate, and more. They may be signing on for weeks, months, or a year of duty. It can be a sobering challenge and responsibility, but clearly one worth the effort.

In creating Caregivers’ Guide, we hope to address the educational and emotional needs of BMT caregivers to help them successfully cope with their caregiving journey and to know that they are not alone.
Through Caregivers’ Guide, the nbmtLink hopes to:

• Elevate and legitimize the role of the caregiver
  
  
• Encourage interventions that permit the BMT caregiver to participate as a member of the healthcare team
  
  
• Encourage family members, friends, and the community to support the caregiver’s efforts and to provide some release from daily responsibilities
  
  
• Empower caregivers to seek psychological counseling for themselves when needed. It is a sign of strength, not weakness to ask for help
  
  
• Utilize community resources for educational and emotional support
  
  
• Educate caregivers as to why it is vital to take good care of themselves
  
  
• Recognize the potential rewards of the caregiver role in terms of personal growth, family cohesion, and a new appreciation for life
  
  
• Reinforce the fact that caregivers are not alone in their circumstances
  

While BMT patients may follow an arduous road to recovery, BMT caregivers walk a parallel path with their own set of unique challenges. With this guide, we hope we have made the caregiver journey an easier one.

An additional advocacy perspective comes from a physician …
As a transplant physician for the past 15 years, I have had the opportunity to work with many wonderful people. Caring for patients through the transplant procedure and beyond requires a multidisciplinary team of physicians with expertise in multiple specialties, highly trained nurses, pharmacists, nutritionists, physical therapists, social workers, and others. Without these colleagues, it would not be possible to provide the highest levels of care to my patients.

Patients themselves are an important part of this team with a very difficult role—complying with complicated therapeutic regimens despite fatigue, pain, and side effects. Their courage and persistence inspire and motivate us.

An equally important, but sometimes more overlooked, member of this team is the caregiver. Most often a spouse, parent, or child (but sometimes other relatives or friends), caregivers play an irreplaceable role in care and recovery of patients.

Most come to the transplant procedure with little medical knowledge or skill but quickly gain competence in the language of cancer and transplantation, acquire expertise in the identification and dispensing of medication, and become able providers of a considerable amount of hands-on medical care. And caregivers provide things the medical team cannot provide nearly as well—love, hope, encouragement, understanding, and a knowledge and appreciation of the patient that goes beyond their illness. When patients are too tired or too sick to effectively communicate their needs, caregivers are their advocates.

Several scientific studies show that patients with supportive relationships fare better than those without caregiver support, and this is true for both children and adults. Though not so scientifically rigorous an evaluation, I know from personal observation that the pain and discomfort of the transplant procedure are borne more easily by those with family and friends to lean on. And I feel much more comfortable discharging a patient when I know he or she has a strong support system upon which to lean.

I also know that this support is not so easy to give. Caregivers often sacrifice much for their loved ones. There are long days and long nights; there is fatigue and discouragement. Careers and usual social and family roles must sometimes be put aside for long periods. Additionally, the difficulties faced by transplant recipients are often acknowledged and are the source of sympathy and empathy from the medical team, friends, and relatives. However, the difficulties of those sharing the experience with them may be overlooked or minimized.

Yet, there are also rewards. Helping the person you love overcome their illness is the most obvious. Additionally, families and friendships may achieve new levels of intimacy as hardships are faced together. Individuals sometimes find they have strength and skills they never imagined possible. But there are days when it is hard to see the rewards—and only too easy to be discouraged by the difficulties.

Caregivers’ Guide for Bone Marrow/Stem Cell Transplant, Practical Perspectives gives the caregiver practical suggestions for getting through the hard days from people who have been there. More importantly, it hopefully lets you know that you are not alone, that it is worth the struggle and that your role is critically important and appreciated.

ABOUT THE AUTHORS:
Myra Jacobs is the founder and executive director of the nbmtLink. Her interest in bone marrow transplant was heightened during her work at a cancer-serving organization. Inspired by the plight and courage of bone marrow transplant patients and families and recognizing their need for information and support, she founded the National Bone Marrow Transplant Link in 1992. Jacobs has been involved in nonprofit management, program development, and fundraising for more than 25 years.

Mary Horowitz, MD, joined the IBMTR/ABMTR Statistical Center in 1986 and has served as scientific director since 1991. Dr. Horowitz currently is a tenured professor of medicine in the Division of Neoplastic Disease and is the interim director of the Blood and Marrow Transplant Program at the Medical College of Wisconsin. She serves on the board of directors of the National Bone Marrow Transplant Program and has served on the National Cancer Institute’s Cancer Clinical Investigation Review Committee. Dr. Horowitz has given more than 125 invited presentations on the subject of hematopoietic stem cell transplantation.To learn more about the Caregivers’ Guide for Bone Marrow/Stem Cell Transplant, Practical Perspectives or the National Bone Marrow Transplant Link, please visit www.nbmtlink.org or call 800-LINK-BMT (546-5268).