Back story

An introduction

In my dishevelled school holidays era. Photo by my eldest

Half way through the interruption of the long summer break, I thought it was about time I said hello to new readers and introduced myself properly.

I’m Sasha, a 51 year old video/audio producer and mum of two boys, and for the last 12 years I’ve been writing about what happened when both my relatively young and fit parents became ill with dementia and moved into social care institutions. I started putting some of my writing on Instagram in 2017, one year after my mum was diagnosed with Alzheimer’s and the year my dad died of frontotemporal dementia (FTD). I slowly found a group of readers and writers, many of whom were also living with dementia, one way or another. I hadn’t expected to find a whole world of community and support and care on Instagram, but I did, and posting there became part of my survival of what was happening to my family. Just like my dad, my mum spent four years in a care home, until Alzheimer’s ended her life in January this year.

Because my parents lacked the capacity to give or withhold their consent to me sharing their experiences, I kept my Instagram account anonymous and didn’t upload any clearly recognisable photos. I still feel strongly that neither my mum or dad would have wanted me to upload photos of them when they were ill, but I know now that I do want to share our story, for lots of reasons, and a few months ago I put our names to it.

Last year I set myself up on Substack, another whole and very different world, where I have enjoyed subscribing to many interesting and brilliantly written ‘stacks’, some of them by writers of memoir, including Clover Stroud, Lily Dunn, Leah McLaren and Lindsay Johnstone. And that’s partly because I’m in the process of pulling together some of the words I’ve written over the last 12 years into a book - a book I’ve only recently thought to call a memoir. Last month I completed Penny Wincer’s excellent non-fiction book proposal course, which has given me the scaffolding to put a proposal together and forced me to think long and hard about what my book is really about and how I will persuade anyone to read it.

I’m finding it fascinating and stimulating (sometimes to the point of over-stimulation!) reading essays and notes on Substack. I’d like to post here more often, about dementia, care, social care and grief, about the process of writing my book and sometimes just about life as I encounter it, if I can figure out a workable balance between actually getting on with the book and producing posts.

What else? I’m a worrier. I’m tall. I’m a born and bred Londoner. I’m interested in family stories and patterns and legacies and self-enquiry. I love ice cream beyond reason. I’ve had a writing project on the go since I was a child. I have one copy of the AP0E4 gene and live with the daily fear of developing dementia myself. I did an MA in Contemporary Poetry. I like yoga, dancing (in classes and around the house), my garden, being in Shropshire and drinking tea with my siblings and oldest friends. I had my kids late and love being a mum.

So that’s the summary, as of time of writing, which happened to be in the dusk of a summer evening, after a day of stream wading and grief and plastic boat racing on the river Wandle. If you’ve got this far, feel free to introduce yourself back, recommend any Substacks I should be reading, and ask me questions.

And thank you as ever for your time and attention.