Wednesday, 9 December 2015

"And all I ask is a merry yarn" by Julia Jones

Mary "great with child"
Mum can’t remember the Christmas story any more, she thinks.  “Who are these people, Jul?” she asks, looking at one of the Christmas cards she’s chosen. We set out her nativity crib with the same little figures and animals that she arranges into stories every year.  She is delighted at first but then she begins to worry: “People will expect me to know what it’s about.”

In a deeper way she does still know. It’s only the names and events that have gone, not the feelings or the insights. We look at Mary on her donkey and I remind Mum that Mary was “great with child” at that moment. We love that word “great” and look at the folds of Mary’s robe to see how big she is really, how far advanced in her pregnancy. 
“She can’t be very comfortable,” says Mum, making an imaginative leap into Mary’s aching pelvis on the long slow journey towards Bethlehem.

Mum's de-mentia, this deconstructing of her mind, would be fascinating to observe if it were not so distressing. It’s like an un-learning: the more I repeat and explain, the less Mum understands. The impact of a picture or a word comes instantly or not at all. I'm shocked that sleep, which I'd assumed would always be a help – the balm of hurt minds, knitting up the ravelled sleeve of care etc --  regularly makes matters worse. I can see that the process of waking is a inevitable disorientation but what has been happening in that slowly dying brain? Nightmares come with an extra vividness -- bad, fear-fuelled, angry dreams, which stick in the memory while other, more constructive information slides straight through. As a writer I suppose I should be interested in this demonstration of the imbalance between conscious and subconscious: as daughter I mainly feel cross.  

One thing I am learning is the extent to which the emotional charge of a word is separable from its meaning. Magical words retain their power when their context has a become a blur and when the capacity for literal understanding has been seriously depleted. We’d been having an extraordinarily bad day (“Alimentary, my dear Watson”) and all I wanted was to be able to leave, to drive home, to think about something else (except I can’t) when somehow we found ourselves with Mum settled on the sofa and me opening The Bible Designed to be Read as Literature.

Another of Mum's card choices
 this year
Listening to the nativity stories transformed her, instantly, from behaving like a grumpy toddler to a fully responding (albeit un-remembering) adult. We were shocked by the duplicity and violence of King Herod: 
“What an absolute villain, Jul!” and we shared the full awkwardness of that moment when Joseph discovers that Mary “his espoused wife” is already pregnant:
“Could be a tricky one, Mum!”
“I should think so. What did he do?” 
We both relished the phraseology of him being “minded to put her away privily” without analysing too thoroughly what might have been meant by this. Never mind the meaning, just feel that language. I choose Book of Common Prayer services for Mum these days... 

Poetry is what’s needed now. My dear friend Claudia Myatt, who visits Mum two or three times a week, repeatedly reads her “Sea Fever” by John Masefield.

I must go down to the seas again, to the lonely sea and the sky,
And all I ask is a tall ship and a star to steer her by;
And the wheel’s kick and the wind’s song and the white sail’s shaking,
And a grey mist on the sea’s face, and a grey dawn breaking.

It comes like a scatter of spray on the cheek but I wouldn't expect "Sea Fever" to work for everyone. If I've learned anything from this unwanted experience, it's that dementia is an intensely personal process. In the same way that growing up is unique to every individual, so is growing down. It’s not any old mind being stifled, it’s a particular mind that has been developed in the course of a lifetime, not just genetically and physiologically, but by those countless millions of impressions and experiences, those ninety years of memories that are flaking away. 

John's Campaign logo,
designed by Claudia Myatt
This time twelve months ago Nicci Gerrard and I founded John’s Campaign in memory of Nicci’s father and in defence of my mother. It began – and continues – with the totally straightforward and common sense insistence that the carers of people with dementia should NEVER be precluded from staying with them in hospital (if they are willing and able to do so). Conversely, people with dementia should NEVER be separated by third parties from those on whom they depend. Let them not be “put asunder” -- as the Book of Common Prayer would say. 
Looking back at the time her family were not welcome to visit their father in hospital Nicci wrote: "It was as if all the ropes that tied him were cut over those weeks and slowly he drifted from us. We thought that when we got him home we could draw him closer to the shore. But he was too far out."

This has been an extraordinary year and no doubt there is more to come. It has forced us to think about the relationship between caring for others and caring for oneself; the interplay between physical and mental states; how to achieve integrated responses within a fragmented system and about the inevitability that life will end. We have identified ourselves as daughters more strongly than ever before and, speaking for myself, this has not been easy. We have learned to use the term "carer" to cover sons, daughters, partners, spouses, next-door  neighbours and devoted home helps. We recognise that there are many people who have no-one to whom they can cling in their time of greatest need. Their dependence will be on the kindness of strangers -- and strangers, we have discovered, can be very kind. The personal recognition will not be there but find the right words, the right pictures, the right music and perhaps not everything is loss and loneliness. Share a story and there may be comfort.

“And all I ask is a merry yarn from a laughing fellow-rover,
And a quiet sleep and a sweet dream when the long trick’s over.”


16 comments:

Susan Price said...

Julia, what can I say? I'm humbled, and can only wish you, your mother and your excellent campaign all good luck...

julia jones said...

Thank you, as ever, Sue. So, can I ask a favour? If your local hospital is not on this list http://www.theguardian.com/society/2015/jul/25/johns-campaign-listing-hospitals-that-welcome-carers please will you just send them a tweet saying "why have you not signed up to Johns Campaign?" We have found that this can be surprisingly effective as hospital communication departments (who monitor all their tweets) want their hospitals to look good and so will frequently pass the question on internally to director of nursing, or whoever...
ANYONE CAN DO THIS!! (Though I didn't write the post as a campaign tool. My heart has been a bit full recently)

JO said...

Or .. All you need is a marry yarn and a fire to read it by ... (metaphorical fire, of course.)

Lynne Garner said...

I teach for the WEA and have worked with many carers in your position and having seen my aunt and my partners grand father drift away from us I can only admire your efforts with Johns Campaign. I've checked the list and find the three local big hospitals near me haven't joined. I'll add contacting them to my list to do this week.

julia jones said...

Thank you Lynne. I worked for WEA for 10 years - great organisation. Perhaps let me know when you've contacted those hospitals and I will synchronise my efforts. It is really surprising what one can do this way

Penny Dolan said...

Wonderful post, Julia, as ever. All good wishes for the Campaign, and for you and all your family this season. Loved hearing the language of the King James bible again, and the double commentary. I'm often surprised by the echoes that stir when, by chance, you hear poetry you haven't thought about in years. Thanks.

Bill Kirton said...

One of the first things that struck me as I read this, Julia, was the juxtaposition of that word 'Mum' (and all its associations of love, comfort, home, security and the rest) with the distancing, confusions and fractures which dementia brings. They're words that definitely don't belong together. They disturb the equilibrium, and it's heartbreaking to hear of the impact on both you and your mum. But you also manage to analyse and convey the awful specifics of what's happening in powerful images. I can only echo what the others have said and hope that you both find more peace than you're being allowed at present.

madwippitt said...

Another marvellous, marvellous post Julia. And how could anyone fail to like Masefield's poem? Not just the imagery of the words - even if they made no sense at all, those wonderful, rhythmical sounds as of the waves moving would be entrancing and comforting :-)

Jan Needle said...

love as always, jul. i'm working on my local hospitals

Susan Price said...

Julia, several of my local hospitals were on the list, but not Russels Hall. So I have tweeted them. Have also posted the article and hospital list on our Facebook page and shared it.

Mari Biella said...

Wonderful post, Julia - and I'm amazed to discover that not a single hospital in the Southeast Wales area seems to be on the list! I'll see if I can exert a little bit of pressure. Johns Campaign is doing invaluable work, and reading your post today just confirmed that.

Lydia Bennet said...

Very moving Julia and so very familiar. I did find the process fascinating as well as tragic, like your mum mine could articulate to some degree how her perceptions were changing. And it's true everyone follows an individual path. I'm in awe of you and Nicci and your campaign, have tweeted my local hospitals which don't seem to be on the Guardian list.

Umberto Tosi said...

I read this lucid, loving and moving account with eyes watering as I recall my father's dementia, decline and end some twenty years ago now. Thank you for your compassionate and boldly precise sharing such deeply personal family experiences this holiday season and for the poetry. We are the better for it.

julia jones said...

Thank you both / all very much. It is impressive what a well-timed tweet can do (thanks Catherine and Jo) and it is also personally lovely to be supported by such a community of friends.

Ann Turnbull said...

This post meant a lot to me, as my mum is now in a nursing home and has dementia. I looked up the list and was very heartened to see that my local hospital in Telford and the one in Shrewsbury are both there, as is the Truro hospital which is my mum's nearest.

Also loved the familiar words of the King James bible, which are hardly ever heard these days, and the reminder of Sea Fever.

Kathleen Jones said...

Such a wonderful post, Julia. Sea fever's one of my favourite poems too - my mum used to recite it when we were little and it never failed to thrill.