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Caregivers' Guide for Bone Marrow/Stem Cell Transplant

Foreword

by Dr. Mary Horowitz

As a transplant physician for almost 20 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 medicines, and become able providers of a considerable amount of hands-on medical care. And caregivers provide things that the medical team cannot provide nearly as well—love, hope, encouragement, understanding, 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. I feel much more comfortable discharging a patient when I know he or she has a strong support system. 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 the 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. This book gives you practical suggestions for getting through the hard days from people who have been there. Hopefully, it lets you know that you are not alone, that it is worth the struggle and that your role is critically important and appreciated.

Mary Horowitz, MD, MS, joined the Center for International Blood and Marrow Transplant Research (CIBMTR) [formerly the IBMTR/ABMTR] in 1986 and has served as Scientific Director since 1991. She received her MD in 1980 and MS in Biostatistics/Clinical Epidemiology from the Medical College of Wisconsin (MCW) in 1991. Dr. Horowitz currently holds the Robert A. Uihlein, Jr. Chair in Hematologic Research and is a tenured Professor of Medicine in the Division of Neoplastic Disease at the Medical College of Wisconsin, where she is also an active blood and marrow transplant physician. She is a member of numerous professional societies and received MCW’s Distinguished Service Award in June 2006, MCW’s highest honor. She was selected to give the Mortimer M. Bortin lecture at the 2007 BMT Tandem Meetings.

Dr. Horowitz is a member of the editorial boards of the journals Blood, Bone Marrow Transplantation, and Biology of Blood and Marrow Transplantation. She has served on the Board of Directors of the National Marrow Donor Program (NMDP) and on the National Cancer Institute’s Cancer Clinical Investigation Review Committee. She is the Principal Investigator of the Data and Coordinating Center of the U.S. Blood and Marrow Transplant Clinical Trials Network. She is also the Research and Project Director of the U.S. Stem Cell Therapeutic Outcomes Database, a component of the C.W. Bill Young Cell Transplantation Program, charged with collecting and assessing outcome data for all U.S. allogeneic transplants.

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Table of Contents

Acknowledgements

Foreword

Why a Special Booklet for Caregivers?

My Gift to Mom for Her Second Birthday: An Adult Daughter's Perspective

Tackling the Challenge: A Husband's Perspective

Cancer Etiquette: A Survivor's Perspective on Effective Communication

Top Tips for Parent Caregivers: A Mother's Perspective

Another Way to Say I Love You: A Wife's Perspective

Emotional Aspects of Caregiving: An Oncology Social Worker's Perspective

Relying on a Family of Strangers: A Patient's Perspective

Symptom Management for Caregivers: An Oncology Nurse's Perspective

How to Be a Successful Family Caregiver: An Advocate's Perspective

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