Bonus Round Caregiver Pages
Toward better patient/caregiver communications
HANNAH, Hospice Social Worker
Index of Hannah StoriesWAYNE**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 © 2000 by the author. http://www.bonusround.com.
I was called before I even got to work today, to do a death visit with an RN for a family I had never met before. The social worker previously "assigned" was not available.
Primary concern and reason for my involvement was to support the 17 year old son, Benny, who was "demonstrating a great deal of anger" and "had put his fist through a door" recently. The patient, Benny's father, Wayne, had died at 7:30 this morning at his home an hour outside of Chicago. This was all I knew. The hospice nurse and I drove together to make the visit.
As we traveled at 20mph on the messy, slick snow covered roads, she began to tell me about the family I was about to meet for the first time. Her account faded with the continuation of the story told to me by the family as they welcomed our arrival an hour and a half later.
Wayne was only 50. He had two other kids besides Benny. Alice was 29. Cathy was 10. The three had lost their mother to cancer three years ago.
Wayne had very quickly realized that his kids needed a "mother" and although his new wife Lora did not replace her, Alice and little Cathy felt that she was an angel sent to them by their mother.
Benny hated Lora.
Wayne and Lora had been together 2 years. Met on the internet. She was from out of state. She moved to Wayne's home with her seventeen year old daughter Donna when she and Wayne married.
This was a new family, that never had time to learn to be a family.
Benny had been very close to his own mother. One afternoon just a few days prior to her death, fourteen year old Benny had come home from school with several of his junior high buddies. When he walked through the front door, his mother began to scream at him. She was saying hateful things, speaking "out of her head", telling him he was not welcome there, that she despised him. The disease was making her crazy. Delirious. Venomous. The effect on her brain was causing hurtful verbal lashes that were beyond her control and left very deep scars.
Benny was mortified. He was hurt, he was embarassed and he was very, very angry at his mother for dying. He wasn't ready. He loved her and he hated her, and he didn't speak to her again after that horrible day. At her funeral one week later, he was described as being completely obnoxious, acting out and seeking attention. No one could understand why, other than to feel pity on this poor child who had just lost his mother, his best friend.
Today he lost his father.
And he was left with his only biological family, his two sisters. "When your parents die, you are in the world in a new way." And a woman he despised. (Lora) And a house in the middle of nowhere. (Wayne and Lora had moved the family from their home to a home out in the middle of nowhere to begin their life together, fresh) And a suspended driver's license. (From a record of multiple reckless driving accidents and "failure to control vehicle") And no access to long distance (he'd been grounded and the phones had been fixed so that a code had to be dialed before making a long distance call; former friends were long distance) He had a police record. He was on probation. He was one credit short of graduation, and was no longer going to school.
I couldn't help but to think of him as some sort of captured, caged animal. And I was another stranger. And he didn't want my help. I had to let go and respect his need to do this his own way. He understood that I was available. He needed space.
Alice very willingly shared her story with me. She was doing well. Speaking very matter of factly, showing me pictures, telling me about her life and her own small children. She also told me she was in the middle of a divorce. She and I were the same age. "Don't ever say that things couldn't get worse, because they can."
I began to hear 10 year old Cathy's story as we sat in the bedroom with Lora who remained in bed with Wayne's body. She couldn't bring herself to leave the bed yet. Her friend Shawna was there with her and felt that we needed to "get her out of the room. This is morbid," she'd said.
I was told about the day that then 7 year old Cathy and her family had traveled to NYC, Central Park, to cast her mother's ashes. A gust of wind had blown at the moment that she threw the ashes and they had blown back all over her, covering her face, neck and chest. The adults with her were horrified. They rushed to her side to see if she was okay, consoling her and telling her they were sorry, so sorry, that had happened to her. She had responded that she was fine. She told them simply that her mother wanted to give her one last hug.
She was singing to herself while we were waiting for the funeral home to come and pick up her father's body. "I'm too sexy for my shirt, too sexy for my shirt, so sexy, it hurts."
We were told of a time that she talked about what it felt like to be Cathy. To be a ten year old who lost her mother three years ago and her father today. What it feels like to lose a family and gain a family.
This is what she said: "You know how it is when you are driving and all this dirt gets all over the windshield? There's more and more dirt. Just dirt, dirt, dirt. And pretty soon, it's all dirt and you can't see anything? Well, that's when God comes. He brings along the water that washes all the dirt away so you can see again."
This was a story about hope. Ten year old Cathy had hope.
The funeral director came. We waited for Lora to spend her final moments with Wayne in the bed that they shared. This was not morbid. This was needed and necessary and beautiful and meaningful. "Take as much time as you need."
Lora told me that Wayne had woken up this morning and informed her that today he was going to die. She told me that he had then taken off his wedding band and placed it on her finger. She told me that he took his last breath shortly after. She wasn't ready yet. She told me that she would never be ready.
We asked if the others wanted time with their dad before the funeral home took him out of the house. The funeral director was patient and kind. He explained that he would be cleaning the body. Preparing him. Making him "look nice". They would be able to spend time alone with him again at the funeral home after he was "prepared". The family was grateful.
Lora curled up in bed and held her husband. Then she gave Cathy time alone with her daddy. Alice wanted to wait till the body was prepared.
Benny said he didn't need to go up. Then he asked me who was in the room. I told him that Lora was there. He wanted time alone with his dad. We went up together and Lora and I slipped out to grant his request. Lora had left the bedroom.
It had been four hours since Wayne's death. We discussed Cathy's request that Lora help her find a "special box to keep her daddy's ashes in". She didn't want something as plain as the small white box in which she kept her mother's ashes.
I gathered the family in the living room while the funeral director brought the body downstairs. They were sitting together. Hugging each other, talking, crying, laughing, watching t.v. Benny had retreated to his room in the basement.
I went upstairs to see if they could use my help, they were taking an unusually long time. They did. It was very difficult to move the cot around a sharp corner and carry Wayne down the stairs. The director needed me to help him at the head of the stretcher. He asked his partner and the hospice nurse to grab onto the foot. It was so heavy. And very awkward. As we rounded the corner I slammed my shoulder into the wall and tore my muscle which immediately began cramping. I wanted to scream, it hurt so bad. But we made it downstairs.
I went to get the family as promised because they told me they wanted to watch as Wayne was carried out into the falling snow and placed in the hearse. We all gathered together with our arms around each other, peering out the front windows.
I turned to look for Cathy. She wasn't there. I asked where she was, not realizing I'd asked the question out loud. Everyone was silent as we searched faces for an answer.
Then we heard her sobs. They were coming from her bedroom upstairs which faced the front of the house. She too was watching alone, from her own private sanctuary.
No words were uttered, we all recognized that she needed this time to herself. We looked at one another as we listened to her sobs behind her closed door. We all continued to stare out the window in silence.
As the nurse and I began to hug the family and say our goodbyes, the tears came again. "Thank you so much." "We couldn't have done it without hospice." "We couldn't have done it without you both."
And I offer thanks as well. Thank you for letting me in. Thank you for sharing your lives with me. Thank you for sharing your most private moments with me. Thank you for trusting me. Thank you for making me feel so special, so helpful, so useful. Thank you for what you did. Thank you.
I went upstairs to say goodbye to Cathy. I knelt down to hug her. She was so tiny. She held me tight. She didn't let go for the longest time and I didn't dare let go first.
We drove back toward the city, watching the snow continue to fall. .
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