Hazel McHaffie

storytelling

Understanding dementia

When I first met my future husband’s grandmother she referred to me as ‘the door handle’. I had no idea how to respond apart from with a shaky smile. By the time my mother developed vascular dementia decades later I was considerably wiser and more confident. Given the exponential rise in incidence rates, all of us must surely come into contact with dementia in one form or another at some point in our lives – a high proportion up close and personal. Having a degree of insight into the condition can transform a tricky situation into a meaningful experience.

As part of preparation for the Portobello Book Festival I’m appearing at in two days time, I’ve just re-read a book that was pivotal in my own understanding of dementia many years ago. It’s called And Still the Music Plays by Dr Graham Stokes, a very experienced clinical psychologist. And I’d highly recommend it.

And Still the Music PlaysEach vivid and sensitively written chapter is devoted to the story of one patient/resident who is exhibiting challenging behaviours, and alongside the narrative the author unravels a rationale for why they’re doing what they’re doing. All too often relatives say dismissively or desperately, ‘This isn’t our mum/dad/aunt/husband/wife. It’s the dementia’, but Stokes’ contention is that many difficult behaviours are not simply attributable to the underlying pathology of the disease, but need to be seen in the bigger context of the person’s life and experiences. Often a simple change of tactic can avert an outburst or distress.

‘Functional analysis is the pursuit of finding out ‘why’ people behave in the way they do. People, whether they have dementia or not, rarely do things without reason. Sometimes we have to ask ourselves, “Why did I say that, why did I act that way?”, and while we may not always like what we find out about ourselves, there will have been a reason. Similarly a person with dementia has reasons for what they do …’

Some solutions were relatively simple. Drawing the curtains at night so that Colin stopped being fearful of the strangers (reflections) lurking outside, and playing his favourite mood music, calmed him noticeably. Changing the colour of a bedroom eliminated Mrs D superstitious fear of the colour purple associated in her Catholic mind with death, grief and mourning. Removing a china cat stopped phobic Lucy’s persistent screaming.

Stop for a moment and consider the setting of a care home, the things that are done there. How would you feel on the receiving end? Then it’s easier to understand why private, reserved, dignified people were disturbed when taken from the relative peace and familiarity of their homes and placed (trapped) in locked wards with complete strangers (residents) all behaving oddly or menacingly, and other strangers (carers) invading their personal space and insisting on doing intimate things to them in secluded places. How are these external factors perceived by a mind altered by inexorable disease? Mrs O went from being ‘the most violent woman I have ever encountered’ to a much calmer gentler soul when Dr Stokes uncovered her past sexual childhood abuse, and realised that she needed the anonymity and unambiguous messages of a disinfected treatment room for all intimate procedures.

I’m sure we can all recognise many of the triggers Stokes identifies: long standing inhibitions about using public toilets; dehumanising or degrading management; an obligation to sit at a table with strangers exhibiting objectionable manners and habits; ‘enforced’ or ‘expected’  socialising; relentless noise, interruptions and activity.

‘Functional displacement provides the person with an equivalent but more acceptable means of meeting their needs in a way that is neither as invasive nor as exasperating for carers to endure.’

What a difference it would make if more of us were sensitive to these triggers and had the patience and persistence to find ways to circumvent them.

As it says on the book cover: ‘Storytelling is the oldest and perhaps best way of learning known to humans.’ The author’s detective work with 22 unique human beings whose lives have been turned upside down by dementia makes compelling reading, and what’s more these accounts help us all to see how important it is to reach out to each individual with compassion and understanding. There but for the grace of God …

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Storytelling

I know, it's been far too long. Oscar will have grown beyond all recognition.    ‘We make stories to make sense of our lives,‘ says psychoanalyst Stephen Grosz. ‘But it’s not enough to tell tales. There must be someone to listen.‘ I’m here for my last event of the Book Festival for 2013 so it’s fitting that it’s about storytelling – my job. As before in the Peppers Theatre, it’s baking hot – the poor chairman is visibly melting. And there’s a booming voice competing from next door where a children’s storyteller sounds to be adopting amazing voices.

In his acclaimed book, The Examined Life, Grosz contends that storytelling is key to sanity, and essential in helping us change. But we can be reluctant to accept the need to change – as the well known saying goes: ‘I want to change but not if it involves changing.‘ This is partly because there can’t be change without loss. But loss is part of living, so Grosz has written a collection of short stories about different patients, tracking the trajectory of life from birth to death, with all the attendant losses and changes that involves.

He selects one man with HIV who consulted him for 22 years to illustrate his work and the relationships he builds up. His aim is to reveal the patience needed to help any patient find out who they are. To capture what there is between analyst and patient; to feel one is there in the room with them. To appreciate the privilege it is to face things with someone else. To see ourselves more clearly through the stories of others.

At the heart of his clinical practice is the idea that ‘All sorrows can be borne if you can put them into a story.‘ It may take a long time for someone to eventually tell their story, but Grosz provides a place of acceptance whatever the person is grappling with. The analyst, he says, has to haunt the patient with ghosts of his past and present and future; haunting makes the patient alive to the realities that he might not want to see, just as it did for Scrooge in Dickens‘ famous A Christmas Carol: this is what is going to happen if you don’t change.

What do you need in order to change? Courage to see things that need changing. Acceptance and tolerance of loss. To be ready to let go of some things in order to have others. And one of the signs of good health is the capacity to ask for help in doing so.

But says, Grosz, a good book can also change the way you think. Yes, indeedy. And what more appropriate quote to use as I bow out of the Book Festival for another year. I’m back for a party thrown by my publisher in the Party Pavilion tomorrow night, but this is my last ticketed event. I’ve enjoyed all the sessions I’ve attended. I hope you’ve gleaned something worthwhile from peeping over my shoulder.

Quote in the entrance tent at the Book Festival

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Summer holidays

Holiday time is here again for Scottish schools, and my calendar has several weeks blocked out in indelible ink for the grandchildren who come to stay every summer. A lovely excuse to forget work and get out and about exploring this beautiful and historic land. We’ve made for the sea several times just to escape the intense heat!

EI Book Festival programmeeAlso written in capital letters in the diary are assorted slots for the Edinburgh International Book Festival – always a highlight in the year. As usual some sessions were sold out before tickets even went on sale to the public (grrrr! Why do they do that?), but by dint of buying them on the first available day, I have seats for events about topics as diverse as fleeing a religious cult; a journey into dementia; a history of the Dukes of Devonshire; the neuroscience of memory; the death of Dr David Kelly; the ethics of dying; one woman’s experience of acute encephalitis; and the role of storytelling in maintaining sanity. Sounds pretty good to me.

I’ve also had invitations from elsewhere to attend a debate on assisted dying and to showcase my work in an arts and ethics symposium, both in August, so lots of excitement ahead.

Over my Dead Body coverOn the Over my Dead Body book front things are moving steadily.  Lots of double checking needed to be sure every step is taken on sure foundations, but this week the final final details are going off to the cover designer, and as soon as he’s worked his magic, the whole thing goes to the printer. Too late then for any more tweaking … Help! Hard to believe we’re in the home straight.

 

 

 

 

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Kurukulla: The Wise Guru

Christmas week! Time methinks for a holiday from all serious debate and difficult issues and deep and meaningful reading. Light relief is called for.

Apparently some of my readers were disappointed not to get some hints as to the Christmas story I was writing for my grandchildren. A deliberate decision on my part because family members (adult) object if I spoil the surprise by giving sneaky previews.

But, after the event, I can now reveal all, and share a glimpse into Christmas Day chez nous. (Apologies for the variable quality of the pictures – still tinkering with settings, but reluctant to spend all of Boxing Day pfaffing with something so tedious, and technical support limited during the holiday period.)

The story centred around four cousins who time-travelled from Scotland in the 21st century, walking backwards up a winding staircase …21st century quartetback in time to the home of a wise guru, Kurukulla, which in Tibetan means dances the rhythms of wisdom.meeting the guru The Wise One gradually transforms them into mini disciples and puts them through a series of initiation ceremonies …initiation ceremonytasting ceremony

learning to be a followerthe guru's suitcaseand as they acquire knowledge and wisdom she adds jewels to their faces … jewelled face 1jewelled face 2jewelled face 3jewelled face 4Magical creatures add surprise elements …magical creatureand a banquet wins the hearts of chocoholics…banquetThe end result: four beaming grandchildren.four happy actorsIt only remains for me to rid the soft furnishings of the smell of sandalwood and musk, and wish you all a peaceful and prosperous 2013 – contentment and gratitude in the good times; strength and wisdom if troubles come your way.

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