Work in progress, no (good) end in sight by Julia Jones

I don’t usually talk about work in progress. The ideas that make stories are such delicate gifts, potentially so fleeting. They must be nurtured in secret and over time. I don’t usually talk about relationships either, not the ones that matter. So how stupid have I been, I wonder, to publish insights from my mother’s recent life – and mine – when our stories are still a work in progress and what is true today may be fool's gold by tomorrow?

Relationships change as people change -- well, we all know that -- but there's something about a close relationship with someone who is living with dementia that feels quite frighteningly unstable. You discover how the faculty of memory ballasts the most everyday interactions. You both know, you assume, that the reason you’re both rather achy and therefore grumpy is that you’ve just returned from walking too long in the sun. But, if the fact of the walk has vanished from one mind, only the grumpiness remains and that can be disconcerting. You may think that it's animosity when it's no more than fatigue. One mind must do the remembering for both.

It is not that impaired mind is empty when it has lost its memory-ballast. Quite the contrary, it’s likely to be overly full – of anxiety and confusion and fear. If you’ve ever tried to climb into a dinghy that is wallowing full of water (of course not, you would bale it first), you will have felt how suddenly and how dangerously it will lurch. One of the things I have learned – at least in theory – is that Mum’s emotions can change in a flash and the approach that was right this morning (or two minutes ago) may be completely off-beam now.

I can only claim that I have learned this in theory because I realise now that I find it very difficult to change my own habits of behaviour. Currently I am trying to slow down, to reduce my instinct for activity and accept that one topic and one only is enough. It’s not straightforward. Yesterday I thought I was managing rather well to stick with a copy of The New National Songbook and nothing else for almost two hours but when we came to lunch Mum really couldn’t eat as the confusion was too great between plate and book. You wouldn’t want to eat a songbook, would you?

Let's pause and have a song instead. It's not in the National Songbook, my friend Claudia Myatt composed this as a reflection on the evenings she spends every week with my mother. It's lovely, please do share.

Sisters - Joyce and
Margery Allingham
As I am thinking about this blogpost the print copies of Beloved Old Age have arrived, pending publication on June 30th the 50th anniversary of Margery Allingham’s deathday. The kindle edition is up, but there is something about the finality of seeing your words in print … When the paper proof arrived last week Mum and I were having an especially bad period and I sat up late that night in her flat, reading the text, urgently needing to reassure myself that at no point did I sound as if I thought I had this caring situation cracked. Uncertainty is now the single thing about which I am perfectly certain.

So why write it? Or why publish? Because writing helps – and reading other people’s writing helps even more. Beloved Old Age is only partly mine and Mum's: the solid core is Margery Allingham’s The Relay written half a century ago. The Relay was her last completed book, never previously published. I'm gripping it, white-knuckled. 

Perhaps also, there is something so extraordinary about observing the deconstructive activity of dementia that it triggers an impulse to respond in some way? It was a wonderful moment recently when my friend Nicci Gerrard won an Orwell Prize for her very fine article about Dementia and the Arts: Words Fail Us. There’s a paradox here. Nicci’s own words are so carefully selected and so potent. Her imagery through all her recent writing and speaking about dementia sticks in the mind. It is the people who are living with dementia who are so badly failed by language. I can think of no more graphic illustration of this than Valerie Laws’s poetry installation, The Incredible Shrinking Brain. 

Today I am going to resolve to stay glad that I have committed this moment to print.  If later on I need to block words and tear out pages, well so be it. Beloved Old Age is a snapshot of Now as Allingham’s Relay bequeathed us a portrait of Then.

Snapshot of a moment that has gone:
June, Julia, Claudia September 2012


Wendy H. Jones said…
Beautifully put. It is so difficult seeing someone you love with dementia. All the very best with the book
Dennis Hamley said…
Thank you Julia. A moving blog, pertinent to m as I watch my brother's anguish with his wife who is well gone into dementia. I must introduce you to Roz Austin, a very interesting person whom I mentor, because she has done work with dementia, including writing poetry with her now dead grandmother. Currently doing a PhD at Durham and also organises conferences in voice hearing, including one at St Catherine's, Oxford, today, which sadly I can't go to because we're just of to Bournemouth for a couple of days to celebrate Kay's birthday and our 3rd anniversary. I've been helping Roz with a fascinating memoir about her own voice hearing and also her YA novel about anorexia.
Jan Needle said…
Thanks for sharing, as usual, Julia. Fine song as well.
Susan Price said…
Beautiful, Julia. Wishing you strength.
Bill Kirton said…
The depth and complexity of sensations your pieces on this theme uncover are astonishing. It's not just about our mortality but a tender reminder of how much more we are than flesh and blood. Even trying to find words to express how profoundly moving these insights are is a challenge I never meet. Thanks, Julia. I hope you continue to find the strength to cope.
Lydia Bennet said…
Thank you so much Julia, for yet another beautifully written piece, your blogs about your mum should be published one day when you feel ready to do that - and thanks for the mention of my installation too. I would include you in the list of those whose words are becoming even stronger, clearer, more expressive as you watch someone you love losing theirs. Your point about remembering for two is so insightful and potent. I can't wait to read yours and Margery's book. Claudia's song is lovely, I listened to it via Facebook. We create art in the face of life that is fleeting, for all of us and not just those with dementia. These writings will remind you vividly of every stage your mother goes through and one day each one of those will have its own value. Even heartbreak can be precious. xxx
glitter noir said…
Absolutely beautiful. Thank you for sharing.
Umberto Tosi said…
Thank you for this moving and exquisitely expressed essay! I look forward to reading your book.

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