Who I helped (or who helped me)
My father was diagnosed with a stage 4 glioblastoma brain tumor in April of 2008. I helped communicate with the medical team and was the central communications hub for family and friends.
Describe the challenges you or your loved one faced.
My Dad was initially diagnosed with a compressed spinal cord, for which he had surgery, but that wasn't his problem. A rehab nurse saw that he was not progressing, so she told my Dad to go back to the neurologist. The neurologist saw the tumor and thought surgery was an option, but these things are not black and white. There are decisions to be made that carry potential risks and consequences. Imagine being told, 'you will never be better than you are today...'...a devastating diagnosis that was very true.
How did you help? (or what help did someone give you?)
I served as a sounding board, clarified information, evaluated risks, recording information and tried to anticipate how my Dad's health would change to help trouble shoot changing living arrangements for he and Mom.
To make sure they received the help they needed, I attended medical visits in person...talked to the medical team by phone, identified in home and out of home care for Dad and Mom and relied on their friends to coordinate help in the early part of radiation to get him to those appointments.
I also made sure that all information was circulated to everyone (with my parent's permission), so that everyone in the care circle understand what what happening, where we needed help and could also report observations/info back to me.
Advice
- Ironically, my Dad became ill at the same time I started a health advocacy business with my nurse business partner. Through this experience, we developed communications tools to help families, record and keep track of information and decisions. The most important item is to zero in on what 'the patient' wants out of the situation and to keep that front and center in any and all conversations and actions you undertake. Recording information in the moment and having someone dedicated to doing that, so you have a good record of what has and will happen (at every doctor visit, you should ask 'what may happen next).
