A Grandson's Devotion Results in the End-of-Life Handbook

Article excerpt

Many people wonder why someone only 32 years old would write a book about caring for a dying loved one. I could share with you how my patients' families often asked for books to guide them; how I yearned for a book with a comprehensive mix of medical, practical and emotional information; or even how I drought it would help me with tenure at my university. But the real reason is much simpler: My grandfather, Milton Feldman, died of emphysema.

It wasn't a surprising death; he had been a smoker for decades. One of my fondest memories is a snapshot, of me at age 6 sitting on Grandpa Feldman's lap as he lounged in his favorite chair smoking a long wooden pipe. Something was graceful about him, calm, deliberate and also funny. We spent hours on silly dungs-seeing who could write his name the smallest or flip the most playing cards into a bowl ridiculously far away. All of this changed, though, when he stopped being able to breadle. The pipe, the grace, the humor-and my grandfather began dissolving before my eyes.

MY FAMILY'S ANGUISH

I now know, as a psychologist specializing in end-of-life care, that watching people you love decline in health can be harder than losing them. Grandpa died more than 10 years ago. I was in college, living in Spain as a foreign-exchange student. I hesitated to leave the United States; I even talked to Grandpa about it. "Go," he told me enthusiastically. He seemed more excited than I was. So I experienced what it was like to lose someone at a distance-not an emotional distance, but a geographical one.

Over the phone, I heard Grandpa's voice weaken and witnessed my family's anguish. I did my best to hold things together from so far away. I'll never forget the moment he "asked a very reasonable but impossibly difficult question: "What's the point of living when I'm in such pain?"

When people ask why I work with dying patients, I often quote my grandfather. After much deliberation, my family opted for hospice care. Immediately, a wonderful cadre of healthcare professionals began visiting my grandparents' home. They gave Grandpa medications to ease his suffering and helped my family cope with pressing practical and emotional matters. He was still on oxygen and still couldn't leave bed, but he could breathe better, his voice strengthened, his humor returned and we had my grandfatiier back, if only for a few months. I echo most hospice professionals in saying that I can't think of a better way to use my life than to help others in this way.

As I began working with dying patients, I became aware of the vast ignorance surrounding the end of Ufe. Death is one of our society's great taboos. Most people have never spent significant time with someone who is dying. This fact is odd considering that we're surrounded by death. There are 6 billion people alive today, which translates into about 75 million deaths in the world per year. Perhaps our culture's denial explains why a woman, age 85, who was caring for her dying husband once pulled me aside, tears in her eyes, and said, "I never thought this would happen to us. What do we do?"

TABOO AMONG PUBLISHERS

Questions such as this woman's got me thinking about writing a book. Unfortunately, I quickly found that the taboo surrounding death extended to publishers. Most phone calls and e-mails simply weren't returned. I found that the best answer to the challenge of writing on this topic is persistence; one never knows when an opportunity will arise. Headed home from a vacation, I was seated in the dining car of a train next to a friendly gentleman. As we conversed, he told me he owned a publishing company, New Harbinger Publications, based in Oakland, Calif. Curious about his opinion on the topic, I asked whether he had published any books on caring for a dying loved one. "No," he responded, "you want to write one?"

Putting a book together is a lot of work, and I quickly realized that I needed a coauthor. …