My Hospice Experience With Dad

Last week, I spent 5 days and 4 nights in hospice with my father, Jack Storlie, who passed away on May 4. During this vigil, I experienced the emotional side of health in the deepest way possible. Before going into a coma, Dad was recovering from an emergency surgery that removed 25% of his small intestines. He was assigned a Certified Nurse Assistant (CNA) to provide 24/7 care in his room. I spent an entire day with one CNA, Amanda, working with her to help Dad start eating again and achieve post-surgical milestones. While executing the technical aspects of his care, Amanda talked to my dad with compassion, respect, and tenderness. She joined our conversations appropriately, gaining personal insights that she skillfully used to coach him. When it was time for me to go home (3-hrs away), I became teary because I did not want to leave him, but I needed to get back to my family and work. (It was the last time I would see my dad in a conscious state.) As I was leaving, Amanda came over and hugged me, whispering, “I will take good care of him.” Two days later, she showed up in our Hospice Room. She hugged me warmly and said, “Jean, I heard what happened with Jack, and I used my break to see how you are doing.” I will always remember Amanda.

On our third day, Dr. Morris took over my dad’s hospice care. After introducing herself, she said, “Since I’m new to your father’s care, please tell me what he was like? What did he do? How many children and grandchildren does he have? What were his interests and hobbies?”  As we shared his rich history, she showed a personal interest and, throughout the next few days, drew on this conversation to manage his care and help us support his journey. We trusted her because she cared.

The fourth night, I was alone for a few hours and faced my darkest moments in the vigil.  Exhausted and overwhelmed, I felt that living in the hospital had become my “new normal.” I simultaneously yearned for and dreaded the end that I knew was coming. As I stood in despair over my dad’s bed, providing the little comfort I could, wetting his mouth and lips, Dr. Udell, my dad’s primary physician, walked in. He told me that it was nice to see me still with my dad and touching him – exactly what I needed to hear at that moment. Our conversation validated my efforts and eased my despair. I looked at the clock – he’d spent 20 min talking to me on a Friday night at 8:30.

The surgeon, Dr. Grover, visited every day, even though my dad’s case had been transferred from Surgery to Hospice. During each visit he inquired about Dad, but also asked how the family was doing. A surgeon with heart, his compassion and commitment was a beacon during our vigil.

The last day, a man who was cleaning our room and another CNA noticed a 2008 news clipping we had posted of my father being recognized for his pioneering work in computer technology. They both said they remembered the article. By paying attention to his life story, they recognized my dad as a real person, honoring him and us.

With the companionship of my sister, who slept by my side and other family members who joined the vigil, along with the support of an amazing hospital staff, I said goodbye to my father in a beautiful way. The staff members who took time to make a personal connection with my father and family will never be forgotten. For those of you who work in patient care, remember that caring makes all the difference.