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Caregivers' Guide for Bone Marrow/Stem Cell Transplant
Practical Perspectives

Why a Special Booklet for Caregivers?

by Myra Jacobs and Michelle Bishop

There are multiple reasons for publishing Caregivers' Guide for Bone Marrow/Stem Cell Transplant, Practical Perspectives. 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 could the nbmtLINK address the unmet needs of BMT caregivers?" and "What could the nbmtLINK do to recognize and support the efforts of these caregivers?"

It is well known that in this environment of increasing outpatient care, the caregiver's responsibilities become closely woven into the BMT process itself. In addition, the health care team actually relies upon the caregiver to provide services for the patient. Studies have shown that the caregiver role is critical to the health, adjustment, and quality of life of the BMT survivor. Yet, the physical, emotional, and social impact of the disease and BMT treatment on the family often are not acknowledged. In fact, caregivers experience the same, if not more, distress than the survivors themselves and are usually less likely than survivors to get the help they need.

After much observation and discussion, we concluded that the creation of a special booklet was needed. By focusing on various perspectives, the booklet would offer insights into the BMT caregiver role while acknowledging and 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, with the hope for a positive treatment. However, 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. Families may be subjected to intense emotions and challenges in the wake of BMT. Treatment may require lengthy stays at a specialized care center hundreds of miles from home. Families often face financial hardship as careers are put on hold and health care costs accumulate. Many caregivers struggle to balance caring for the survivor with raising children and tending to the household. The caregiving role is not a casual responsibility. It is a serious and ongoing promise. BMT caregivers may "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 even years of duty. It can be a sobering challenge and responsibility but clearly one worth the effort.

With regard to the long term picture, BMT family caregivers may continue to feel the impact of the cancer/BMT for months or years after the active caregiving stage is over. Although most are remarkably resilient, a substantial minority continue to be negatively impacted by the personal, family, and life changes that occur. Studies have shown that approximately 20% of BMT spouses report symptoms of depression many years after BMT. Many feel lonely with limited social support for themselves and describe fewer of the positive changes, such as new life meaning or personal growth, which many BMT survivors describe. It is important that BMT caregivers be aware that, like BMT survivors, they may experience long term "side effects" of the experience and should seek the help and support that they need and deserve.

In creating this booklet, 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 this publication, we hope to: