When you take care of your parents, close up, personal and full time, for the last decade of their life, going through experience that got you dismissed from two different caregiver support groups for being too intense, the stories are deeply entwined into your mind.
It doesn’t matter if it is calling Hospice on the day before your mother died to try and get someone to take you seriously or the moment a neurosurgeon in the ER tells you that they missed the break in your father’s back and he ins now paraplegic, the moments stick.
They aren’t charming, sweet moments you can share with other people. They are tough, tough hard moments which demanded you put aside your own emotions and concerns to do the work that needed to be done.
I was my parents caretaker from a very, very young age, which made me also the target patient in the family, scapegoated for illuminating problems that they would rather keep in the dark. I saw where the work needed to be done, but I was unable to get them to do it, their own Aspergers style minds having such tunnel vision, missing emotional content.
As the oldest, I couldn’t just hide in the shadows and find other families to connect to. I bore the brunt and was called “stupid” for years because I wouldn’t play along and be silent.
I became enmeshed in my parents lives, having to learn to keep myself inside a boundary because I knew there was no way they could hold boundaries, no way they could affirm life outside their vision. My mother sucked up everyone else’s stories, and my father understood only at a basic, loving level or in his own crackpot engineer’s reveries.
Since they died, I have been looking for some way to put my story in amber, to share it in a way that can make sense to others, but I have not been successful at all. The story of end-of-life care pushes everyone’s emotional buttons. Humans spend lots of time running from the truth of mortality, not engaging the cycle of life and death. And the story of how I had to be their proxy is an enormous thing to engage and bear.
Last Saturday there was an Autism event locally and I looked to see if there was any exhibitor there who could understand the challenges of the child of two AS parents, finding none. My stomach bug — giardiasis? — kept me away, as did the requirement to take care of my sister every day for the last week, from comforting her about her failures as their executor to driving her about for car repairs to fixing her tech devices.
As the requirement to move on hits me hard, the weight of the story, so intertwined with mine and so unsharable still flashes up for me all the time. I have found no place to discharge it, no techniques to put it in context. The artifacts I had hoped to unpack, from voice diaries to medical records, still stay potent and weighty.
The flashbits are there and as I feel the need to dispose of the physical effects of my parents lives, the story bits lurk in every object, every flash.
How do I find a way to turn the lightening into stories that can be stored away, making room for a future?
I don’t know. I just don’t know.