Bonus Round Caregiver Pages
Toward better patient/caregiver communications
HANNAH, Hospice Social Worker
Index of Hannah Stories
(Notes from my diary)
Jerry died today. Jerry was fairly young, in his mid-50's. He'd been trying to die for a very long time. I've sensed it, and his wife and family have felt it too.
He has been completely non-responsive for months now, unable to talk, unable to communicate at all, and his wife, a most humble woman, has sat at his bedside every single day in the extended care facility where he has been forced to live as a result of all his complicated medical needs. I've met with her several times.
We always sat right next to the bed where Jerry laid connected to a ventilator and all kinds of tubes, wires and monitors. We always talked about Jerry and what he was like. I never knew Jerry when he would have been able to tell me about himself.
I think I probably got to know him even better through the eyes of his wife. We had talked about what her daily routine had been like, waking up, going to the nursing home, spending the day with Jerry, taking her evening walks to clear her head.
During these walks, she would often think about the walks they used to take together and the way life felt with a Jerry who was "well." We had talked about the funny things that Jerry does and the funny things he says. Talked about what it was like when she met him for the very first time.
Talked about that feeling you have when you know you've met your soul mate. Talked about what that FEELS like. That was a great conversation.
We talked about what Jerry's family meant to him, about how much he loved being a father, perhaps more than anything else. We had talked so much it seems that I felt I had a good sense of Jerry. I felt good about that. Felt like I knew him, even though I never got to hear his voice or see him smile.
I was called at the time of his death so I could be there at the facility to meet the family when they arrived. It was a difficult visit for me. I had never before met his daughters, although I had heard so much about them and their special relationship with their father.
That visit at the time of death is so much more awkward for me when I haven't met family members before. The youngest daughter was the only one who could come at the time of death. She initially had a hard time being in the room with him.
For a long time, she stayed out in the hall talking with a nurse and a friend of the family. Very slowly she'd entered the room and started to come closer to his bed. I was standing with his wife beside the bed on the far side of the room. She was on the other side, the bed separating us.
She eventually approached the bed after some time had passed. It was a big step for her, I could tell and I was just concerned with trying to help her see that it was okay to be near him.... to touch him if she was comfortable.
I think that being with a body can be a terrifying thing for so many people. I remember feeling terrified. That seems like a long time ago. How do I even explain what happened next?
There were so many people in the room at that moment. Everyone talking softly about Jerry's life and his struggle with his illness, talking about what the last years had been like for him and his family. It was a heavy feeling of sadness mixed with some sense of relief. I remained somewhat distracted, more concerned with the daughter who had now inched herself right next to the bed where she laid her hand on the pillow. She was my age.
Perhaps I was identifying with her too much to be of help to anyone else in the family at that moment, but I realized I was practically holding my breath watching her movements which were unsure and hesitating.
She sat down on the bed and then ever so gracefully placed her head upon her father's chest. She began to sob quietly and her mother sobbed with her. Then her mother made a most beautiful gesture and moved Jerry's arm so that he could "hug" his daughter.
I realize that to someone reading this, it may seem somehow morbid, but it was not at all. In fact, it was one of the most beautiful moments I had ever witnessed. She had closed her eyes and breathed deeply, seeming completely present in that moment, feeling that all encompassing embrace. Her father, with all his monitors and wires had not been able to embrace anyone for months.
Again, I asked myself what ever did I do to be so privileged? To be witness to such moments leaves me forever changed.
Index of Hannah Stories
*All the names, dates and locations in Hannah's story have been changed to protect patient privacy. These stories are offered to the reader as part of our ongoing patient/caregiver communications program sponsored by Bonus Round Inc. All materials © 2001 by the author. http://www.bonusround.com.