Friday, July 17, 2009

Small coffins

As I've worked with the family of a pediatric hospice patient, we've been discussing the funeral arrangements. I'm in awe of these parents that must now plan a funeral for their daughter. She still cracks us up with her quick wit during lucid moments but it is now just a matter of time before she slips away. The father shared an interesting idea regarding these arrangements. He said several years ago a child in the area died and the parents chose a white coffin. They then handed out markers to all the child's friends from school and in the neighborhood. The kids were able to cover the coffin with messages. The family I'm working with is considering doing the same thing. There's comfort in knowing these messages of love will follow their daughter's body in to the ground. They won't change anything but I think it would be powerful to see the impact one life had by reading what others write.

I'm struck by the feeling of helplessness I bear each time I leave their home. I often say that there's nothing you can do or say to make things better for our hospice patients. There are things we can do to keep a bad situation from being worse but we can't take away the illness, we can't stop death from occurring, and we can't take away the emotional pain of loss. I am generally OK with this helplessness when it comes to my patients. I'm good at being present, at listening, at helping caregivers care for themselves. Those gestures often mean more than empty words. But when it comes to a 13 year old dying of cancer, it all goes out the window. I want to make it better somehow, some way. And I know that I can't. I think that I have helped this family but I wish I could do more. Because of that, I'm having difficulty processing these visits. I feel drained and, yet, I know I'm the best social worker for this case and I hope that I can work with pediatric hospice patients again in the future. (I must note that I do not want there to be more cases of children requiring hospice. Simply, if a case is referred to us, I want to be the social worker assigned.) If there is anyone with personal or professional experience in dealing with children at the end of life, I'd appreciate hearing insight on how to process these visits and how we as caregivers can take care of ourselves during this time.


Donna said...

hey leigh- i am always impressed by your ability to work with adults in hospice, but to hear about your experiences with children and their families is amazing. you have truly been given a gift. i am praying for you as you continue in these visits. -donna

Cheryl said...

I'd check out the child life council there are people who specialize in hospice that could help you through there