The ailments were eventually linked to the real problem: a brain tumor. Suddenly, an inability to say the right words to make herself understood was put into a new and horrific light. Options were surgery and – if unsuccessful – radiation. Oldest sis was the official maker and felt she was following my mothers wishes when giving the go-ahead. Although I was nowhere near as certain my mother would want this assault on her body, as the youngest there was little I could say or ask (family patterns being what they are) The remainder of my mother’s life was godawful. And made the more horrible because – although there was little that she said that made sense – she was clearly saying ‘no,no, no’ as she was wheeled into radiation. She died, not of the brain tumor, but of pneumonia.
The conversation I so wish I could’ve had would’ve been based on questions I didn’t know then. What was asked was: ‘what ‘s the survival rate of/success rate from the surgery.’ What should’ve been asked; ‘What’s going to be the impact on quality of life? How long will recovery take? What will it ‘look’ like? Might there be other complications to consider?’ Of my mother I would’ve asked – long before the crisis point – what’s important to you? What worries/ frightens you?
All this I have learned from participation in social media – starting with lurking on tweet chats for healthcare professionals devoted to ensuring ‘a good death’ and through this amazing group – links to resources (that’s how I got to the conversation project). I was motivated to embark on my own journey. The more I journeyed, the more I realized how little I knew – about medical options, and what and how to reflect on values – as relates to my own life’s end. And so www.BestEndings.com was born.
And now, I am impelled and compelled to have The Conversation with everyone! Most recently my 91 year old father in law who, I’m happy to say, was hugely relieved to talk and learn and feel like he’d could make informed choices. (much to the surprise of his sons – who anticipated him shutting me down)
Thank you for the platform to share journeys.. and conversations.