CareGiver Guide

You can't care for another until you care for yourself…first!

Their Stories

Zone 2 tells the stories of the journeys of other care givers.

The Death Experience as the Crucible of One’s Faith

by Spencer Berger

  Both of my parents died from protracted illnesses. My mother had leukemia. At age 54, she was given a prognosis of three to five years. Wanting to experience what remained of her life with as much comfort, dignity and grace as possible, she opted not to undertake radical therapeutic measures such as chemotherapy.

She dies at the age of 65 –astounding the medical community with her ability to survive 11 years after the initial diagnosis. Her main wish was to be able to die at home.

That wish was met.

My father suffered an Alzheimer’s-like dementia that began 17 years before his death. I thought of him as “disappearing dad.” Like the Cheshire Cat in Lewis Carroll’s Alice in Wonderland, bits of dad were there one moment and gone the next. Forever irretrievable.

As a son, I provided care out of love as well as a sense of obligation. I found care giving to be satisfying and rewarding. It also was stunningly frustrating at times. I wasn’t comfortable sitting on the razor’s edge.

Am I doing enough? Am I doing too much? Am I doing the right thing? How do I deal with the guilt of not having (fill in the blanks)? I was aware of the reversal of roles: I was the parent of my parents. I projected thoughts of my own mortality and demise.

More questions. Do I need to protect myself? If so, how? Can I accept that I am participating in a life and death cycle? Am I showing up selfless, i.e., with no baggage and no agenda? I may have been serving the outer, expressed wishes of my mother and of my father, but was I serving their true, unstated wishes? Have I the courage to pursue this question?

I wondered to what extent was I responsible for the ease in which they made their transition. It was not from their knowledge of and commitment to religion and spirituality, I decided. Both experienced a Protestant upbringing, but that’s where their paths diverged. After his confirmation, Dad did not attend church on any regular basis.

He made a telling remark one day in the year before he died, that maybe it was time to study some of this religion and spirituality stuff. To my knowledge, he was not in touch with any sense of spirituality. My mother, on the other hand, was the granddaughter of an Episcopalian minister and attended church on a regularly. She lived spiritually and gracefully.

Life was very different for my father. He had been treated for anxiety during his adult life. I would characterize him as a volatile, angry man. A searing, painful memory.

A few months before Dad died, my brother, who is a psychiatrist, and I visited him in his room in the health care wing after one of the regularly scheduled meetings with his caregivers. I was first in the room and saw that he was awake in his bed. I called out to him, “Hi, Dad, how are you?” He reared up, eyes bloodshot, spittle flying from his mouth, and cried out, “How the hell do you think I am?” I fled from the room.

My brother found me moments later distraught and shaking in the hallway. He saw how upset I was and told me that wasn’t really Dad. That was the last time I saw my father.

In processing these grievous losses, I realized that our western culture does not teach one how to die. Aware that I would like as much dignity and grace as possible in my own dying process, I started on a journey to maximize the experience and to minimize my confusion, anxiety and fear.

I very quickly realized that whether or not consciously faced and expressed, these concerns have to be primary in the minds of those faced with the death experience.

In addition to helping myself, I wondered how I might be of service to others. I took the hospice volunteer course offered by Visiting Nurse Services.

My clients were men ranging in age from their 60s into their 90s. I had two who were 96.

What surprised me, because it was so simple and so obvious, was that the common need was but one thing: contact—mental and physical—that demonstrated caring and concern. Contact is what we as human beings need. Volunteering, giving, inspired as well as energized me.

I will admit to having mentally down moments seeing my clients able only to lie in their beds. Waiting. For the nurse? For the orderly? For death?

A client told me one day in a raspy, whispery voice, “It’s the same thing every day. Nothing changes.” I questioned the impact I was making, wondering if I really made a difference.

My answer arrived one Sunday night when the daughter of one of my 96-year olds called to tell me that her father had passed.

I thanked her for calling and said that I must be way down on her list. “No,” she told me, “You are the second person I called. My father loved you very much.”

Love, with all its energy and permutations. It’s that simple. In that cradle of giving and receiving, lies the interactive and reciprocal dynamic of care giving as an expression of love –love for the caregiver and for the loved one being cared for.

Care giving, requiring the greatest courage to face one’s own fears and demons, is aided by this seminal concept from the Prayer of Saint Francis: “Lord, grant that I may seek rather to love than to be loved.”

Yet, love notwithstanding, the death experience is a crucible that tests one’s faith.

ABOUT THE AUTHOR: A former hospice volunteer, Spencer Berger is currently a candidate for the masters degree in Holistic Counseling at Salve Regina University. In recovery with AA, he is a two-time cancer survivor.

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