Foreword

 

In my twenty-three years as a cardiologist, I have worked with countless families striving to navigate the complex challenges of caring for a critically ill loved one. In that time, I have met few more dedicated and caring than Jim Williams and his family.

I first met Jim in April of 2004 when his mother, Jane, suffered a devastating stroke. Jim and his father devoted their lives to JaneÕs care for the next 3 1Ú2 years, learning to manage every aspect of her medical treatment during subsequent hospital stays and home recovery. Her quality of life during this difficult time was in large part due to their constant diligence and intensity of focus.

As with many families in similar situations, the Williams family found themselves in unfamiliar territory, making decisions under tremendous pressure, often with limited information. Jim and his family did their utmost to learn from and cooperate with doctors and nurses, proactively finding creative ways to help Jane cope and improve Ð a true testament to their commitment and resolve.

The lessons they learned as JaneÕs condition took its course were hard earned. These serve as the foundation of this remarkable book, unique in its wealth of practical solutions for many of the most common situations and decisions facing advocates of loved ones in need of ongoing medical care at the hospital and assistance at home.

It contains useful tips and advice relating to stroke and rehabilitation, but most of the issues addressed are not necessarily disease, affliction or even age-specific. They can be applied to a wide range of conditions requiring acute care, including elective surgery, Òelderly diseasesÓ like stroke, cancer and AlzheimerÕs and those faced mostly by younger patients from trauma due to auto and motorcycle accidents as well as athletic injuries.

After 3 1Ú2 years of actively participating in his motherÕs care, Jim spent another 2 years writing and polishing this book into its present form: a user friendly, practical handbook for advocates. It is indeed well named.

I am confident that this book will be an invaluable reference and resource for families and caregivers. Perhaps more importantly, I know it will provide a measure of reassurance to those facing seemingly insurmountable health challenges that they are not powerless Ð and they certainly are not alone.

Jon Kobashigawa MD

Clinical Professor of Medicine
The David Geffen School of Medicine
University of California at Los Angeles


Director, Center for Advanced Heart Disease
Director, Heart Transplant Program
Cedars-Sinai Heart Institute

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Preface

Contents

Chapter 1 At The Hospital

Chapter 2 Before Leaving The Hospital: Questions To Ask Doctors And Nurses

Chapter 3 Before Leaving The Hospital: Arranging Visiting Nurses And Therapists

Chapter 4 Before Leaving The Hospital: Arranging Home Healthcare Equipment And Supplies

Chapter 5 Extra Equipment At Home

Chapter 6 Staying Organized At Home

Chapter 7 Oxygen Equipment And Respiratory Issues

Chapter 8 Suction Machines And Equipment Troubleshooting

Chapter 9 Antibiotics And Infection Prevention

Chapter 10 Tube Feeding Issues And Tips

Chapter 11 Original Medicare, Private Insurance And Billing Issues