Column: A mother teaches her hospice CEO son how to die

Rafael Sciullo and his mother, Josephine, about the time she began living with him.

Photo courtesy of Rafael J. Sciullo

Rafael Sciullo and his mother, Josephine, about the time she began living with him.

My 90-year-old mother died last month. I was her caregiver for 10 years and I have no regrets, only gratitude. It was time that will never come again.

A decade ago, with Ma's health declining and her unwillingness to seek medical care in the midst of clinical depression with the loss of my father, I invited her into my home. She managed her own activities, continuing to enjoy making delicious pizzelles and wedding soup. Eventually her health shifted. She had difficulty walking and was fearful of falling. Then in 2009, a major change occurred.

Her right foot pushed back and she had difficulty moving it. She was diagnosed with spinal stenosis. Her age and a 95 percent blockage in a carotid artery made surgery out of the question. But she needed surgery for the blockage.

Ma endured weeks of hospitalization and rehabilitation. Some doubted she could come home, but home we went. Her care became more challenging with bathing, incontinence and lifting, but with some help I managed. Ma was where she wanted to be and I was committed to caring for her.

One evening, as I made the sign of the cross on her forehead as I did every evening, wishing her sweet dreams, she said, "I will always watch over you for how you cared for me." I will never forget that moment of selflessness and gratitude. I felt blessed that my mother was so giving, thinking only of others.

Ma's hands became clenched and arthritic and she could not feed herself. She required total care but kept her sweet disposition — never complained. Last year, when I was offered the CEO position at Suncoast Hospice, I decided not to leave Pittsburgh or uproot her. But when she heard of the offer, she said, "I go where you go." So began our adventure.

Her lack of mobility took its toll, and Ma developed a serious pressure wound that required extensive surgery and wound care. The wound healed on the outside but an infection to the bone developed, requiring hospitalization and a six-week course of IV antibiotics at home.

Ma's physician asked me point-blank, "Do you know what is happening with your mother?" I thought — of course I know, I've been in hospice for more than 30 years. Instead I asked what he meant. "Your mother is in the process of dying, not today or next week but soon," he said.

His words confronted me with a stark reality. I have devoted my life to hospice care. I have assured families that loved ones in hospice would have peaceful, comfortable deaths. And yet I could not make the decision for hospice for my mother. I had to admit I had succumbed to the myth that hospice means giving up — hastens death. My mother could live and I would continue to care for her.

The IV antibiotics affected Ma physically and mentally. In time, she developed a blood clot, causing pain and edema. And there was one more thing. When I tried to feed her, she would not open her mouth. She looked at me as if to say, "My son, I'm ready. Our journey has ended."

At that moment I knew I had to give her a gift — a final caring act. While I have always been told I have a passion for hospice, my passion was incomplete because of reluctance to give hospice for the one I treasured the most, my mother.

Now, I would change that. She was admitted to our hospice care center on a Sunday in September. I went with her, prepared to stay throughout her journey. Ivan, my golden retriever and Suncoast therapy pet, was with us.

The physicians and care team made Ma comfortable. Their abundant compassion gave me a huge sense of pride and thankfulness to be CEO of this organization. Ma did not eat at all. By Thursday that week, her breathing slowed, becoming shallower. I knew her life would end that evening.

Something told me to hold her in my arms. She had to know I'd be there until the end. Ivan placed a prized "baby" (toy) beside her. Ma drew her last breath peacefully in my arms. All I could say was thank you.

My passion for hospice is complete. I will be a better person and leader because of my mother watching over me. For she taught me one of life's greatest lessons. She taught this hospice CEO how to die.

Thank you, Ma. Sweet dreams.

Rafael J. Sciullo is president and CEO of Suncoast Hospice. He wrote this exclusively for the Tampa Bay Times.

Column: A mother teaches her hospice CEO son how to die 10/11/13 [Last modified: Friday, October 11, 2013 4:11pm]

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