Hospice talk...the right way

Mom's trusted primary neuro-oncologist physician came to the room at 5:30pm on Thanksgiving Eve. He had a day full of meetings with patients and wanted to spend quality time with mom before he went home to his family. Dr. Pudavalli floored me as he spoke with such ease, clarity, eloquence and compassion. Over nearly an hour and half he gently explained to mom that the only "treatment" they can offer at this point is to treat the symptoms. He admitted that we have run out of treatment options for the brain tumor. He discussed that in order to leave the hospital we need to discuss home health care options and he deftly worked the word hospice into the conversation.

The potential of getting out of the hospital - Mom is medically stable to be released from the hospital at this very moment. Dad and I, however, have reservation and fears about her coming home with no professional help lined up at home to care for mom. It is a tough decision that we must face. Mom wants to go home so bad, but since it is the Thanksgiving holidays nothing can be done until Monday in regards to setting up home health care. If we wait til Monday we have to endure the hospital for four more days through the holiday weekend. If we go home now, that will put a huge amount of pressure on Dad and I to take care of her at home. That is 24/7 intensive hands on care.

Physically - Mom is so weak at this point that it takes 2-3 people to help her transfer from the bed to the toilet seat. She is medically stable and can be released when she is ready and there is a plan of action for care at home.

Emotionally - She was just hit by a train square in the chest and is crying and screaming her way out of it. Since the highly unprofessional counselor came into the room and spoke the dreaded word of hospice out of context and out of order mom has cycled through crying spells and repeating herself, "I don't want to die. I could punch that woman. She took away all of my happiness. I have nothing to live for. Everyone is giving up on me."

Mentally - I think this is the first time since June 24th when she was diagnosed that she truly understands the severity of her diagnosis. For many of the past months she blindly trudged forward not fully comprehending that a grade IV inoperable glioblastoma malforme tumor is kind to no one. Perhaps this was her coping mechanism and perhaps that is how she has stayed so strong up until now. We do know for sure that she now understands that this disease will take her life.

I hear 20 times a day from all of our loved friends and family, "Brook, if there is anything I can do to help please let me know." I ask you all now to put on your big girl panties, pick up the phone, send an email, come visit mom and just spend time with her. Continue giving her what brings her the most joy, your love and friendship. She doesn't want food or flowers, she just wants to enjoy spending time with the people that she loves. I know it is scary, uncomfortable and sad to be around someone who is facing the last months of her life, but try to find the strength in you (just as so many of you have already) to spend time with her and call her as much as you can squeeze into your schedule.

It is 2:30am and mom is restless, but I just have to repeat one funny thing mom just said. Since this evil nameless counselor came into her room at 11:00am on Thanksgiving Eve mom has been obsessed with trying to find out who this woman is, getting her in the room, getting her boss in the room and chewing them out. She has asked everyone that comes into the room (even the nurses' aid) to find this woman's identity. She just pushed the call button and when the nurse's aid came in, mom said, "I need a police officer." I just had to laugh - at some point there is nothing else to do. Mom wants a police officer to come to her room at 2:30am on Thanksgiving to put together an investigation to find out who this woman is.