I don’t know whether it was a good idea or not – probably not since most of my ideas are pretty duff – but I decided to gather together all the gloomy, anguished, philosophical and occasionally funny posts I happen to have tagged ‘dementia’ and publish them in one gloomy, anguished, philosophical and occasionally funny e-book entitled Dementia’s Daughter.
It dawned on me that since August of this year I had accidentally written an awful lot of words about a subject I never imagined I’d write about at all. In that month my mother, who had been going gently downhill for several years, decided to embark upon an ever-steepening slide into annoyingness, incomprehensibility and unmanageability – and I found myself sliding in right along with her. Coincidentally in August – or maybe not so coincidentally, in hindsight – I started a blog called La Tour Abolie and began to write more or less daily posts about anything that came into my head. Some of the posts in Dementia’s Daughter are entirely about dementia, some partly, the rest just sort of touch on it in passing.
The thing is with another person’s dementia, it colours everything. You don’t really notice at the time. It steals over you like Dickens’ magnificently metaphorical fog at the start of Bleak House – and then it steals you. As I say in the Foreword – or was it the Afterword? – you get to be like poor old Nancy in the Leonard Cohen song – she of the green stockings and the sleeping-with-everyone-in-nineteen-sixty-one – you get to be alone and staring at the Late, Late Show through a semi-precious stone: skewed, discombobulated, estranged from yourself.
It’s infectious, dementia. I don’t mean you can catch it like a germ, more that after several hours of being communicated at by a demented person their weird world starts to suck you in. Like treacle, dementia logic glues you to the floor, the walls and the ceiling. You begin to fear there will be no escape this time. You begin to wonder what Normal was like and whether you were ever there, and whether there might still be a tiny door somewhere in Elfland that you could squeeze through of if you made yourself very, very thin…?
All the books and blog posts I’ve ever read seem to have been written by terribly, terribly sensible, calm and patient people; saintly, dedicated daughters and sons; generous, competent Elder Children who love their formerly-magnificent mothers and have some clue as to what to do when that same mother decides to rip all her clothes off in the kitchen, exposing bits of herself never seen or wanted to be seen before, or stomp off on an unscheduled two hour walkabout with a four-wheeled shopping trolley, meaning that instead of going home you have to hang around and wait for her in her silent, underheated living room with only abysmal TV quiz shows for company and not so much as a cat for consolation. Keep your coat and scarf on, is my advice. Make yourself a cup of tea. Then another. And then, possibly, another. Try to think of nothing. It’s better than any of the somethings you could be thinking about.
I am not a carer, I am not built to be a carer, I do not have the attributes or personality of a carer and I admit, I hate her sometimes. I dream of escaping from her – somewhere far, far away like Scotland. Yes, I long for cool Scottish glens, mountain streams and lonesome, snow-covered peaks. I am not kindly; I am not patient; I prefer my own company; I do not care overmuch for anyone and I get bored very, very easily. I never got to have children of my own, though I desperately wanted them. Instead I find myself learning how to steer un-bendy arms into wrong-angled coat-sleeves, how to help a human being escape from a car-seat and how to ride out a Terrible Twos tantrum, at an age when I’d envisaged myself finally free of The Toad Work, tucked away in my little study spying on uninteresting neighbours from behind greying net curtains, and listening to a mixture of Heart and Radio 4 whilst churning out a string of best-selling historical romances, or possibly a fantasy mega-series not dissimilar to Harry Potter.
I do not care to waste my Planet Sized Brain on digital wander-alarms and provisions for incontinence yet somehow I seem to be doing it. I am not inclined to remember the code for the key safe, yet it seems to be engraved on my memory whilst all my other PIN numbers have vanished. I require my life back, thank you very much. All this needs to be ALL OVER but I know it’s unlikely to be any time soon.
So this is what I did – I gathered all my posts together in a single document and wrote a Foreword and an Afterword – did I mention them? I am rather proud of them. As usual, for lack of funds I created one of my own covers, which amateurish concoctions using Word, Paint, Neevia and Morguefile are nevertheless more artistic than what comes out of Cover Creator Beta – the horrendous old clunky piece of kit provided by the Kindle people. This time there is even – pause for amazed intake of breath – a Clickable Table of Contents. Yes, I did that. A Clickable TOC. Me!
And published it last night. It’s on at $2.99 which is about £1.99 or EUR 2,99.
I wouldn’t recommend this particular collection for Christmas or bedtime reading but if you do happen to be, or suspect you might be in the process of becoming, a carer for someone with dementia this e-book may be for you. It’s called Dementia’s Daughter and it’s by Rosie.