New Book Helps Readers Cope with Ill & Dying Loved Ones

Posted: Wednesday, October 01, 2003
In his new book, NO REGRETS, best-selling author Barry Neil Kaufman explains the principles he used to heal his relationship with his father after a 40-year rift (and to completely heal his son of severe autism). These principles can help readers find inner peace in the face of conflict and see opportunities in the challenges they face, which is imperative to one's health and well being. They can also help them be with aging, ill, or dying family members in a whole new way.

Why do you think it's better to be authentic with a family member when they're ill or dying rather than protect them from the harsh truth? Wouldn't it be better to make it as easy as possible for them?

Isn't it ironic that in our culture many of us might believe that the way to make it easier for someone facing a difficult illness or impending death is to say "nice" things rather than what is in our hearts? No wonder people can live and die in the midst of caring and concerned family members and yet, in the deepest sense, die alone (never really heard, never really known).

How could this happen? Most of us have been systematically groomed to be inauthentic in order to either take care of ourselves or to take care of others. We do it for the best of reasons ? kindness and love.

However, withholding our "real" thoughts and "real" feelings builds an invisible wall of separation. "Tell your sister you think her prom dress is attractive even though you think it looks like a relic from another century." "Tell your grandma you really like her soup even though you wouldn't feed it to your dog." It begins innocently and, for many of us, "reasonably."

Unfortunately, such withholding escalates. In the end, we hold the hand of someone we love who is facing a critical life-threatening challenge, and say "everything will be okay" when we know it won't. We go further by sharing, "You look great" when we think you look very sick. Our apparent kindness leaves the person we are talking with isolated and alone. Worse, the person we seek to comfort often chooses to reflect inauthenticity back to us to save us from our own discomforts about their illness or situation.

When my father called me to help him as he now faced invasive cancer, I vowed to open the doors wide to complete honesty (even though it violated the family ethic of polite smiles and withholding of feelings). My desire was not to challenge him but to truly love him. For the very first time, we started to talk about what we really felt about each other and ourselves ? and, for the very first time, we built bridges of warmth and intimacy.

When others around him kept telling him how great he looked, he would turn to me and ask for my assessment. One time, with a big smile, I gave him two thumbs down and he cheered me, laughing all the time. He knew he looked gaunt and haggard and relished the opportunity to talk honestly about his situation rather than to be part of the ongoing masquerade. What might appear to be areas of discomfort dissolve in the face of authentically shared moments and authentically shared experience.

Inauthenticity is a lonely road to travel ? to be known (and valued) for who we are not rather than loved and appreciated for who we are. My father and I found the safest place to be with each other ? no more secrets, no more hidden corners. We said the "best" and the "worst" of what we had thought about each other, and in the end, we came to adore what was left ? two men, father and son, flawed, imperfect, sometimes locking heads together, but now open and honest and totally adoring these new and very precious moments together. When my father died in my arms, I felt we had built a bridge of honesty all the way to heaven.

When faced with your father's illness, you showed great love, patience and persistence. What events in your life prepared you to take on such a difficult task?

Many of us develop different kinds of expertise throughout our lives. For the basketball player, it might be the hook shot. For the economist, it could be the ability to predict business trends and cycles. For a mother, it might the sensitivity with which she expresses her love.

Throughout the years, my major area of study focused inward ? on human dynamics. Why do we think and feel as we do? How come we buy some beliefs and not others? Who, in the end, determines what is right and wrong? When does it make sense to be hopeful and optimistic verses sensible and realistic?

I had the opportunity to challenge myself with all these questions decades ago when one of my children was diagnosed as irreversibly autistic and mentally retarded. In the end, my wife and I swept aside the beliefs and judgments of experts and walked our own road in an attempt to help and heal our son.

Using a process of acceptance and love, which we teach worldwide today, we entered our son's unfamiliar and bizarre world, joining him in his behaviors and ultimately, leading him across a bridge back to our world. He became a high honors student, an Ivy League university graduate, and a highly respected seminar leader and lecturer. I feel honored to have had such an opportunity, not only with my son, but to share this process with thousands of people facing a host of challenges, from depression to the loss of a love one, from relationship conflict to dealing with chronic illness.

Ironically, when my father called me, asking for my help after having been diagnosed with invasive cancer, I felt as if I had trained for this experience all my life. What made this request so meaningful for me was the fact that our relationship had been discordant for decades.

My father respected what he deemed as my worldly accomplishments (author, director of a learning center, seminar leader) but took issues with the heart and soul of what I had been teaching for years. He dismissed the notion that "happiness is a choice" as not just simplistic, but an insult to the complexity of human genetics and the surrounding circumstances. Attitudes, for him, were not chosen but, in fact, inherited and determined by circumstances.

Thus, the very notion he rejected enabled me to serve him. Caring for someone facing his or her own demise in the midst of family members who might be frightened or distressed is a circumstance that asks us to be the biggest and best version of ourselves. If I could have taken away my father's pain, I would have. If I could have eased his frustrations and calmed his anger, it would have been my joy. However, those were characteristics of his part of the journey that I was not in charge of. But what I could do is choose to be open, choose to be accepting, choose to love, and be as nurturing as I could so that my father had a friend, a best friend, as he explored his humanity and his mortality.

What enabled me to hold my father's hand in this way? Choice! I have spent most of my life developing tools and perspectives that enabled me to find beauty in what others held as difficult and to search for the blessings in what others viewed as a curse. In that regard, my father and I walked not only walked with each other; we walked with God.

In NO REGRETS, you talk about giving ailing loved ones control over their lives and deaths. How can we do this when, oftentimes, we believe that we might know better?

Helping those we love through the twilight phase of their lives is not about who knows better. It is about love and the expression of love; it is about trust and the expression of trust. Oftentimes we, as caregivers, believe we have a special clarity in helping those who seek our support and comfort.

My adventure (yes, adventure) helping my father through the final days of his life led me down a different road. When my father felt pain and the doctors suggested remedies, I asked him what he wanted ? what he thought suited him best ? and then attempted to fulfill his requests.

When family members wanted my dad to have yet another round of chemotherapy (in order to prolong his very challenging existence), I solicited his guidance. He wanted to go home ? away from the hospital. He wanted to live and, now, to die on his own terms ? not pushed and prodded and probed in accordance to some clinical standard. His wish was expressed in a weak voice because his body would no longer allow him to function independently. He needed the help of others who could not and would not let him go.

Here again, in the face of opposition from family members and hospital staff, I did not try to force my agenda on this frail man, but instead helped to engineer his desired escape. With my step-mom, we drove into the mountains of western Massachusetts. He stood on a pastoral hillside in front of my home, smiled at the setting sun, and announced (almost in a whisper) that he had come to heaven. Over the next month he regained some of his strength; ate only the foods he wanted (all of which had been taboo on his essentially vegetarian diet); talked about his deepest fears, loves, and passions; speculated about his ultimate visit with God; and then, early one morning, died in my arms.

What had initially appeared as complex had become simple. There is no greater gift that we can give those we love than the freedom and support to live and die as they choose. We cannot know what is best for another person because we do not live in their skin. Ask that person what they want. Find out specifically how we can be of service. Prolongation of life another month, another week, or another day is not a victory.

A more meaningful measure of value would be our ability to help someone make the final moments of life dignified, precious, and even delicious. The universe blessed me with the opportunity to serve my dad in accordance to his own standards and wishes rather than to my own. To ask rather than to dictate allows us to let go into love. What a simple and accessible blessing!

You talk about intentions in NO REGRETS. Why do you see intention as so important?

That's a great question. Often, many of us experience our lives as leaves blown by the wind. We do not feel as if we are in charge of our experiences but sense ourselves to be, often, victims of events around us. Certainly, we cannot control what others say or do ?we don't control the weather, events around us, the movement of viruses in the air, floods, storms, acts of war, etc. However, we are in charge of how we choose to respond and what we choose to feel ? that is a fundamental of what I teach and experience in the seminars and courses we present at our teaching center, The Option Institute, in Sheffield, Massachusetts.

I had such a profound opportunity to put the power of intention into practice with my own father. My dad and I had been in a pretty discordant relationship for decades. I talked about happiness being a choice; he proposed that genetics and the environment were important ingredients to consider.

I suggested we could change ourselves in big ways quickly and without pain; he argued (rather angrily) that we are how we are, with only limited abilities to change, and such simplistic ideas indicated disrespect for the complexity of the human condition. Oil and water!

Clearly, he seemed closer to and more comfortable with my siblings who shared many of his perspectives. Thus, he surprised me one Sunday morning when he and my step-mom, Rosie (who I adore and love dearly), called me to solicit my help and input ? requesting that I not share any of the conversation with my siblings. I agreed rather tentatively.

My father then told me he had been diagnosed with metastasized cancer that had spread throughout his abdominal area and he wanted my help in deciding what to do. I kept thinking as he spoke that although he'd had difficulty relating to me for years, he must have decided I could be helpful to him. I leaned back, thought quietly about what he'd just related, and then considered how I wanted to be and how I wanted to respond. In effect, I considered my intentions.

I decided, first, to be fully myself. Then I decided I would do whatever it took to love him and serve him. After years and years of floundering, in a matter of a few seconds, I had grounded myself with a clear purpose in my unfolding relationship with my father.

I leaned forward into the phone and said, "Pop, I am so excited for you. Sounds like you are about to begin one of the great adventures of your life."

For the next few moments, absolute silence reigned on the phone. Then my father laughed out loud and said to Rosie, who had been listening on the extension, "You see, Rosie, that's why we called him. Listen to his attitude."

NO REGRETS recounts the surprisingly deep and tender journey that my father and I began on that Sunday morning. It was a journey guided by clear intentions ? by clarity of purpose.

I remember one afternoon many months later, asking my father if I could hold his hand as I sat in a chair beside him. He smiled and took my hand, permitting a texture of contact and love that we had never shared before. He was eighty-five. I was approaching my mid-fifties. Father and son holding hands. I could not recall ever doing that with him, even when I was a child.

Each time we were together, I would ask myself, "What is my intention?" And so, when my siblings experienced much pain and distress as my father faced his escalating challenges, I found myself feeling only warmth, love, and gratitude for a benevolent universe that had provided both of us with this one last chance to heal our differences and to celebrate what we came to enjoy and respect in each other.

The event was not what provided that opportunity ? clear intentions, from the very start, made it possible. Wherever I go, whatever I do, I always begin "on purpose" with an intention. Usually, it's the decision to be happy (and that is whether or not I get what I want). Other times, it is the intention to be present or to be loving or to drop my judgments.

Instead of being a leaf blown in the wind, I experience much of my life being guided by those intentions. No, I cannot dictate the events around me or the actions of other people, but I can decide, even in advance, how I will be. Thus, I can say, long before any social gathering, that I will have the best time because it will not be dependent on how the folks around me behave, but it will be determined by how I choose to be and what I choose to feel.

This may sound gender-biased but, someone said that your newest book, NO REGRETS, displayed such tenderness that it would appear as if it were written by a woman, not a man. What do you think?

(Laughs) First, I would take that as a compliment, a wonderful compliment. In most cultures, we are brought up within the construct of our gender, we learn to adopt beliefs and act in certain ways to express our gender designation. As a boy, expressing emotion (even feeling emotion) was taboo, a sign of weakness, a diminishment of masculinity.

I remember fighting back my tears as a thirteen-year-old after having been physically brutalized by a group of teenagers. Even as they restricted my movement and pounded me with their fists, I didn't show the hurt and outrage I felt inside. Then, one time, I exploded screaming and crying, and in my own judgment at the time "not a very manly thing to do." Later, when I pleaded tearfully with my father to take me home from the military school I attended, he instructed me "to be a man." So I held it in for his approval, for the world's approval.

Now, fast-forward forty years. My dad has just been diagnosed with metastasized cancer. He is in pain. Although I have many siblings, he reaches out specifically to me. Tough guy! Still tough! But he knew that I had changed and, perhaps, that was his reason for calling upon me.

As an adult, I had learned that being a student of myself and understanding my beliefs, feelings, and behaviors were paramount in allowing me to create happiness. I had dug deeply into those dark crevices inside. I shouted. I judged myself. And, yes, I cried (mostly alone). That journey inside allowed me to change myself to be open, to express warmth, to be tender, none of which now seem unmanly. My wife and I had used the principles created through such introspection to heal our autistic son, to establish a teaching center to help others (The Option Institute in Sheffield, Massachusetts), and for me to express myself by writing books about our experiences and our work.

For the next two years after my father's diagnosis, he and I had one of life's great adventures. We broke down the walls between us. We dared to say who we were. We looked cancer directly in the face and dealt with every emotion and belief we had. He allowed me to hold his hand, to hug him closely, to kiss his cheek. He began to express affection, even initiate it.

From age eighty-four through eighty-six, he changed himself, demonstrating a level of warmth, ease, and gentleness that I had never, ever seen before. Even more startling, he told me about his inner world and inner thoughts that he had previously deemed as "private material" which he never would share with others. What an honor to help him, to love him, and to serve him.

So, of course, I would want the words and feelings expressed in NO REGRETS to reflect those actual events, even if readers decided the book had been written by a woman instead of a man. Yes, we were two men but, as time progressed, we did not restrict ourselves to those "pats on the back" that men tend to give each other. We looked deeply into each other's eyes; we held hands; we hugged gently and warmly; we expressed our hidden thoughts and feelings; and we allowed ourselves to cross bridges into each other's world.

As I work with folks from around the world at our teaching center, I realize that such contact might be more typical among women because of their beliefs and the permission women give themselves to express their feelings and inner worlds. There is so much for us, as men, to learn from the warmth and expressed affection modeled by our mothers, our grandmothers, our sisters, our girlfriends, our lovers, and by other women in our lives.

My father and I had an awesome opportunity to walk such a road and in the end to know we had thoroughly expressed ourselves and had lived our lives during that time with great tenderness and, certainly, with no regrets.

For more information, contact the Option Institute at 1-800-714-2779 or visit

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