Bonus Round Caregiver Pages
Toward better patient/caregiver communications
HANNAH, Hospice Social Worker

Index of Hannah Stories

Age 28 AIDS


Tommy died today at 1:57pm. I was alone with him and was holding his hand when he took his last breath.

I received a call from the hospice nurse at 10:30 this morning informing me that he was not responding, his family was very anxious and had requested that I come to their home.

Tommy seemed peaceful when I arrived. His breathing was very shallow, he was not struggling, but had a vacant stare. I sat beside him and took his hand and told him that I was there.

His entire family was in the room. His mother, his father, his sister, her husband and his best friend Kevin. We were all together for hours, talking to Tommy, talking about Tommy, sharing all kinds of stories. There was a lot of laughter and many tears, but we all trudged on together sitting with him.

His face was turned to the left and although his eyes were vacant, his face was turned toward me. The hospice nurse came and I helped clean him and change him, reposition him and get him more comfortable. The nurse was then able to leave. We were all together and the family was no longer anxious and afraid.

Slowly people began leaving the room to take breaks, get a bite to eat, smoke a cigarette out front. Tommy's mother and I stayed with him. She talked about yesterday and how Tommy was through the night. Then she said she'd give us time alone together and she went to take a break. I think this was the first time she'd left the room since late last night.

I told Tommy that it was just the two of us. I kissed his hand that I was holding and put it on my cheek. I told him that I was picturing him in the place that he had described to me to be his idea of heaven. It was the place in the picture that the art therapist had done for him. It was hanging on the wall directly across from his bed so he could look at it. I began to remember the place aloud with him.

I told him that I saw the rolling green hills and wide open space, the pond, the weeping willow. He stirred. He ever so slowly turned his face toward me and his eyes became completely focused. He was looking at me. He opened his mouth, his face became completely peaceful, like he was speaking to me and telling me with his eyes that he was seeing something great, something.....holy.

He took one last big breath and then exhaled. I was just waiting for the next breath. I started shaking, I was still holding his hand and my hand began shaking. I sat rather stunned. I whispered that I loved him. I didn't want to move. I just stayed there for a moment. His eyes were still fixed on me, but his gaze was one of peace. It seemed that something had been lifted, something that I can't quite describe, but his ravished body was only his shell.

I am so grateful to him to have shared this with me. I am so so grateful. Thank you Steve for helping me find a way to deal with the intense grief that I feel right this moment. I told you not too long ago that Tommy had asked me to be with him when he died. I was so scared that I would not be able to come through for him.

I was afraid that it would be the middle of the night, that I wouldn't have my pager, that I would be out of town, that I would be too late.

You promised me that I would be there. Thank you for reassuring me.

HANNAH* [Write Hannah]

[A note from Hannah: It is not unusual for me to journal about my patients. It IS unusual for me to tell my patients that I journal about them. During one of my visits with Tommy I had shared this with him in the hopes that he too could find some way to record the intense emotions that he was experiencing. He had asked if I'd ever written about him. I told him that I had. It was not long after that I asked Tommy's permission to share some of my journal with Steve.

Tommy understood that I was struggling to help him and I explained that I was looking for some insight from someone who could better relate to his experience. He very quickly gave me his permission. When Steve then wrote back asking me if he could "publish" Tommy's story on his site, I was a bit taken aback. This was not my intention. This was something that felt very private to me. I could not share Tommy's story unless Tommy wanted me to share his story.

When I approached Tommy with Steve's idea, I explained that I would of course change his name and take out any identifying information.....he stopped me and said to me, "Please use my name."

To Tommy, this story was his legacy.

On the Monday before his death, I had stopped to see Tommy and found him too lethargic to speak. It had been over a week since the last time I'd seen him and when I walked in the room, he opened his eyes, reached for my hands and said, "I've missed our talks."

He then fell back to sleep and never woke up. I had cried on my way home, thinking about how much I'd missed our talks too, thinking about how much I would always miss our talks. Then that Friday I received a call from Tommy's mother. She couldn't contain her excitement when she said, "This is a good day. Tommy wants to see you." That day was a gift. It was not a long visit, but it was filled with memories of our short time spent together, and Tommy was happy. He was planning his birthday party and he invited me to come, "not as my social worker, but as my friend."

Tommy died two days later on Sunday, June 18th, 2000. It was exactly one week before his 29th birthday.]

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. All materials © 2000 by the author.