Hazel McHaffie

Portobello Book Festival

We’re all in this together

Portobello Book Festival It’s Saturday. It’s raining. Where am I? Yep, at the Portobello Book Festival. Why? Cos I’ve been invited to take part in an event about dementia. (Hardened visitors to this blog will know about my novel on the subject: Remember Remember.)

Today I’m sharing the spotlight with a poet, a doctoral student, and a campaigner. Could be interesting. In the chair is Alison Summers who, as part of a PhD in Creative Writing, has recently written a novel about a young person with dementia (she’s currently on the hunt for an agent). She has the job of firing the questions and keeping us all to time – not easy as it transpires!

On the panel? Tommy Whitelaw who went from being part of a global merchandising operation for the Spice Girls, Kylie and U2 (yep, really!), to being a full-time carer for his mother when she developed vascular dementia. He’s currently touring the country campaigning for better care and understanding of the condition. He’s here to talk about his personal experience, not his brush with fame. Next to him is John Killick, who’s spent decades helping people with dementia express their creativity, the results of which are captured in his recent book, Positive Dementia. He’s one of life’s natural listeners and he’s still kept busy promoting improved ways of caring in all sorts of places. And then there’s me.

Ahah. The introductions establish a common thread: all three panel members have been working actively in the dementia world, using the spoken word, as well as the written – fact as well as fiction – to help raise awareness of the condition and the issues around it.

Perhaps it’s not surprising then that, though we all come from different backgrounds and different disciplines, and we weren’t in cohoots beforehand, a concerted message comes across:  the importance of properly listening to people with dementia and their carers; listening to what they say and what they can only express through their body language or music or even silence. Care based on that kind of compassionate listening will be truly person-centred, respectful and sensitive. The kind of care we would all want for our loved ones.

Cross inside churchThis cross just inside the Old Parish Church (the venue for the session) seems entirely apposite.  Sensitive, responsive care is a form of love for our fellow man.

Blackwell's van

 

 

 

 

 

 

 

Good to see friends from Blackwell’s Bookshop there too with piles of my novels. It still gives me a thrill to see those 3-for-2 stickers on them.

As I walk away from Portobello I’m reminded of Sigmund Freud: One must not be mean with the affections; what is spent of the fund is renewed in the spending itself.

PS. Remember this?

Iron railings

Well, voilà!

Black railings

In spite of the rain and the professional engagements and the time spent with lovely ladies with dementia and all the sundries of everyday life, after four coats of paint, those endless endless railings and gates are now finally FINISHED! Hurrah!! And the tedium of the job gave me oodles of time to plot my talk – this time about Over my Dead Body. Another tick on the to-do list.

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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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A diminishing art

Hmm. The latest edition of the women’s writing journal Mslexia has come down in favour of writing books by hand. HandwritingAuthor and workshop leader Jackee Holder reckons that the act of writing with pen/pencil and paper unleashes an extra layer of creativity. The slowness and concentration help you to focus and connect to what you’re writing. D’you think she’s right? Is that your experience?

Queen of chick lit, Jill Mansell, says she hand writes her novels … whilst sitting on a sofa with daytime TV blaring! Goodness, gracious! Queen of nothing me, I much prefer typing my stories – so much faster and easier to tweak and rearrange and cut and paste and find my way round – in perfect peace and quiet, squirrelled away in my study.

But maybe these other authors are more single-minded, not using their hands/time for all the multitude of tasks mine are grappling with. They’re certainly unlikely to be painting interminable iron railings! It has taken more-hours-than-I-care-to-tot-up of painstaking work for ours to go from pink primer to grey undercoat to black top coat (multiply the surface area you see by 2). Unbelievably fiddly and time consuming and weather dependent. We’re planning to christen them our ‘Independence Gates’ because we were working on them in the run up to, and during, Scotland’s vote on the referendum question.

Iron railings

Of course, I’m still writing and reading and thinking alongside the painting. Indeed tedious tasks like this offer very useful thinking/plotting time. I’d love to share my recent reading with you – it’s unexpected and challenging and uncomfortable – but I can’t  because it would spoil the denouement of my current novel if you knew in advance where I’m going. Suffice it to say that some of my acquaintances will draw in their breath sharply – at the very least!

I’m also mentally preparing for a number of looming author appearance – if you’re in the Edinburgh area and interested, I’m at the Portobello Book Festival on Saturday 4 October  (talking about dementia and Remember Remember), and the National Library of Scotland on George IV Bridge on Tuesday 21st October (focusing on organ transplantation and Over My Dead Body). If you come, do make yourself known to me. Incidentally, though they’re ticketed events, both are FREE! With these forthcoming appearances in mind the horrific experience of Kate Long, successful author of seven novels, resonated with me this week. Fairly early on in her career, she attended a bookclub session where members were discussing one of her novels. Turns out no one but the group organiser had liked it at all and they roundly condemned it – in her presence. What made it worse was that Kate had spent £100 and travelled 200 miles to attend the event! And she didn’t like to ask for reimbursement because the group were part of a charity. Insult to injury comes to mind. However, on reflection, since she felt nothing could ever be that bad again, the encounter actually gave her confidence. She now knew she had the inner strength to survive and acquit herself with dignity, whatever was thrown at her. Give that woman a medal for sharing her humiliation with the rest of us. That takes courage. Oh, and subsequent undisputed success, maybe, too.

To date I’ve been lucky; I’ve never encountered that sort of negativity. But maybe I should prepare myself. I’m not at all sure I should bob back as healthily as Kate.

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