Hazel McHaffie

Dementia

Challenging behaviours

For those of you who are new to my blog, I should explain that I am no stranger to dementia. My mother developed the vascular form during the last year of her life; I’ve spent a fair amount of time over many years (as a volunteer) with people who are living with this and other variations of the illness; attended a number of conferences on the subject; read literally dozens of books about it; and even written one myself.Remember Remember

Even so, this week I learned several new facts about it when I attended a course on how to manage challenging behaviours. Did you know for example that changes occur in the brains of people with dementia that make them prefer sweet things? Some delegates on the course were salivating at the very thought of a cast iron reason for skipping the main course and diving straight into dessert … two desserts maybe!

Did you also know that memories are lost in the reverse order to that in which they are gained? Which is why the person might not know what they had for lunch but they vividly remember their mum.

The course tutor was really good, using both her academic knowledge and her practical experience (she was a manager of a residential home for people who presented with challenging behaviour) to excellent effect. All the delegates present are currently employed in caring for residents in care homes in their working lives, but don’t we all know someone with memory loss and confusion at some level? So the kernel of the course is probably relevant to anyone.

The secret to successfully being alongside them without getting distressed yourself, is to remember that challenging behaviours are a form of communicating something. If we’re uncomfortable or upset by these behaviours we are not ‘getting’ what the person is trying to convey. Remember Martin Luther King‘s comment: ‘Violence is the voice of the unheard‘? We have to ‘listen’ to what’s being ‘said’ by these reactions and try to think ourselves into the shoes of the person exhibiting the things which we find challenging; to work out what might be making them feel trapped or frustrated or afraid or embarrassed etc. And isn’t understanding how people tick, why they do what they do, the stock in trade of every novelist?

For me personally there was another very salutary lesson too: there is no shame in admitting ‘defeat’. There are days when I simply can’t make any headway with a person, I can’t ‘walk in their moccasins’, and I come away feeling guilty and dejected by my own inadequacy. Better to accept gracefully that today I am not the person to be with her/him, or to do that activity with her/him, I learned. Maybe indeed I am not the person best suited to this particular resident/patient/friend at all. It’s probably nobody’s fault; merely a feature of the disease.Aged hands clasped

I’m often asked if I’m a full time writer. No. But I’m sure I’m the better for spending time walking alongside these vulnerable people who can teach me such a lot, some of which in turn feeds into my writing life.

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The Iron Lady

Commiserations to all of you who’ve pre-ordered Saving Sebastian from Amazon but still not received it. I’ve done my best to find out what the delay is but action hasn’t followed promises, I’m afraid. It’s available from The Book Depository and Luath Press but somehow has only this morning been processed at Amazon. Believe me, I’ve been grinding my teeth on your behalf.

Frustrating to say the least, so I’ve been immersing myself in other things – writing, reviewing, interviewing, reading, partying, preparing workshops …

And in between vaguely debating within myself : Shall/should I go to see the film about Margaret Thatcher or shall/should I not?

Pros: My long-standing interest in and involvement with dementia. I spend time most weeks with people whose lives are affected by it. My own mother developed it. I’ve written a book about it, Remember Remember. I’ve read piles of other books about it – fiction and factual. I care very much about the way people with dementia are treated.

Cons: an instinctive concern about the ethics of the film being made while Baroness Thatcher is still alive. Is it morally right? Would she agree if she were able to give properly informed consent? Plenty of people have been quick to criticise.

But this week I overcame my reservations and went to see it. My thinking and rationale: I should make up my own mind about the wisdom and rightness of it all, based on the reality, not judge it without a hearing.

I came away surprised by my own conclusion.

Meryl Streep is superb as The Iron Lady herself. Brilliant acting, brilliant makeup, brilliant screenwriting. How someone can inhabit a character to that extent, and be as much Mrs T in her eighties as in her forties, is a mystery to me. She richly deserves all the plaudits and honours coming her way.

Some of the supporting cast are less credibly the big political and family names of the time, but that was a minor distraction. One can readjust without losing too much most of the time.

The depiction of dementia is gentle and sensitive. The reality can be a hundred times worse. The ageing MT/The Boss Lady/Mrs T may be muddled about what’s real, and talk to Dennis (whom she can still see), and struggle to keep up with conversations, but she remains dignified and decently clothed and largely independent. It’s probably sanitised; I don’t know how badly affected the real Lady Thatcher is, but it is altogether appropriate and respectful. And yet a believable portrayal of dementia. The repetition, the confusion, the delusion, the focus on the past, the haunting fear.

Curious and unexpected, though, was the effect on my feelings about the woman herself. Yes, as the Prime Minister she was shown at her most strident and dictatorial, convinced of her rightness both at home and on the world stage. But because we were seeing her power years through the soft focus lens of her dementia, they were somehow muted. Perceiving her as vulnerable, doubting, fearful, unsure of her role in the past as well as the present – well, I felt a huge warmth and concern for her.  How good to extend that sympathy now while she is still alive.

I wanted to reassure her when she quaveringly wonders if Dennis had been happy, when she faces the fact that her adored son is not coming to see her, when she packs the last pair of her husband’s shoes in a black bag and says yet another last farewell. You did what you thought was right at the time. You had the courage to stand up for your principles. You made your mark when the opportunity presented. Now let it rest, concentrate on today. Savour each lucid moment, every happy thought. While you still can.

Another realisation came to me as I watched. Somehow the hallucinations and fluctuating memories make a perfect vehicle for conveying an extraordinary life in 105 minutes. I couldn’t have borne an hour and a half of political posturing and unflinching dogmatism. I had no difficulty staying with the meanderings of an old lady clinging to the past; the riots, the war scenes, the speeches, the lectures, brief glimpses through the fog of a clouded mind.

Would I feel the same if I were Carol Thatcher? I don’t know. But that’s more to do with what the film says about family relationships within the Thatcher household than about portraying her mother’s dementia.

So, contrary to all expectations, I personally think the film has the potential to do positive things for those affected by this illness, as well as for the lady herself. Not my favourite film of all time but I’m glad I went to see it.

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Parting is such sweet sorrow

Reports of my death have been greatly exaggerated. This week at least.

But one day they won’t be, and I’ve been giving quite a bit of thought to my forthcoming demise of late. Two people I know well are terminally ill right now and that does tend to concentrate the mind somewhat, I find. So forgive a rather more sober than usual reflection this week.

You don’t get to my age without knowing loss. My father died suddenly and dramatically – a heart attack on a bus. My sister-in-law died slowly from cancer. My mother died in steps and stages – a series of strokes and vascular dementia. All were sad experiences and all left the family diminished.

But when I think of how I’d personally like to go, then there’s a clear winner. I’d choose my father’s death (without the bus!) – retaining dignity, independence and enjoyment of life right up to the end, then a nice quick clean end. OK, I know it’s a shock for the family, but it’s a great way to go for the ’victim’. And I’m talking about the victim – me.

Why this navel gazing? This week’s newspaper headlines. I spend time every week with people with dementia, and my recent experience with my mother is still very vivid in my mind, so of course, I pricked up my ears at the big print a few days ago: Britain faces dementia catastrophe …
People now fear dementia more than cancer or even death.

Were you surprised by this? I wasn’t. There’s something particularly harrowing about watching someone you love lose their connection with the world and you. Seeing them behaving in ways they’d be horrified by if they knew. Fearing they have a glimmer of insight. Knowing it’s all downhill. Of course, I know there are wonderful people out there doing amazing things to capitalise on the positive, minimise the negative. And I salute them. But dementia is still a distressing disease. And the statistics are scary.

‘One in three pensioners will die with it.’
‘A million people will suffer from it within two decades.’
‘Twelve times as much is spent on cancer research as on research into dementia.’
‘There are six times as many scientists working on the treatment of cancer.’
‘As many as a third of people who develop dementia are never formally diagnosed, and without a diagnosis they aren’t receiving the services to which they are entitled.’

The facts were spread all over the papers.

It’s a massive and increasing problem. And it’s scaring people rather like the threat of HIV/Aids did back in the 80s and 90s. Only none of us can hide from this particular threat. It isn’t affecting specific groups; it’s lying in wait for any one of us regardless of class or wealth or lifestyle. You can’t buy yourself out of this one. You can’t insure against it. You can’t put yourself outside of its reach by any means except perhaps dying very young. Or committing suicide.

Funding cuts are threatening to reduce spending in the neurosciences (that includes research into dementia and mental illness) by £4 million. But Alzheimer’s Research UK has launched a special appeal for public response to increase investment in this cause. Because the world still isn’t taking enough notice of this massive problem. Is it because so much of the tragedy is played out behind closed doors, I wonder? Sir Terry Pratchett thinks so. And he’s got a vested interest in this.

How sad is that? Sigh.

Me? I’m off to chop things very, very small!

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Best laid plans gang agley

A couple of months ago Professor June Andrews of the Dementia Services Development Centre at Stirling University ordered 600 copies of my novel Remember Remember to distribute to delegates at the DSDC’s 4th International Conference in London. How cool was that!

Well, the conference has just happened. Here’s June blowing out the candle on the anniversary cake with the actor, Simon Callow.5london

I was wheeled in on a meet-the-author-and-get-your-copy-signed basis. And what an experience it turned out to be. On several levels.

Now, I must confess, London doesn’t feature on my list of top ten favourite places – I’m a country bumpkin at heart and all that noise and dirt and frenzy isn’t for me. But the ExCel Centre in the Docklands proved to be a stunning venue – loads of space; joy-of-joys – immaculate loos with never a queue (and believe me that’s a rarity at big conferences); abundant drinks breaks; helpful staff; a chocolate fountain  … ExCellent!

91londonUnfortunately though, there was one serious glitch. In spite of all the careful planning and checking, the books didn’t arrive until lunchtime on the last day. This highly organised team (in pink to make them easily identifiable to those without dementia as well as with) must have been pretty fed up about that, although it was completely outside our control, but to their credit they remained calm and philosophical – at least outwardly.422london

However, the hiccup had an unexpected bonus for me; it meant that I was free to attend sessions on the previous day. Wow! Lots of inspiring things are going on in the world of dementia and it was great to hear about them from the frontline people. Practical advice as well as careful analysis of research findings. A veritable feast.

Just in case you don’t know, age is the strongest known risk factor for dementia. In a week where I am due to celebrate (?) yet another birthday, that’s quite a sobering reality. As my delightful 7-year-old grandson informed me spontaneously, I shall be older than the number of zoo homes around the world for the snow tiger! (Answers on a postcard please.)

I can’t, of course, slow down time, so I’m concentrating on mitigating other risks:
– taking care of my cardiovascular system
– watching my diet
– keeping my mind and body active
– maintaining a strong social network …
It was useful to have them all rehearsed so succinctly, and if I hadn’t been feeling utterly lousy from a bug on the return journey I’d have started exercising in earnest there and then. As it was I was so dizzy and sick I had to lie down all the way. I even had to pack away the book I’d taken for the purpose –The Book Thief by Markus Zusak – a treat I’d been specially saving for this trip. More of that another time.

Signing books

© Tony Marsh Photography

But let me tell you, being in a conference with people who work in the world of dementia is an incredibly uplifting and reassuring experience. This is my second exposure, and as last time, I was blown away by the sheer warmth and empathy of these special folk. En masse they leave a huge impression. As one of the plenary speakers said, they aren’t interested in a love of power; they believe in the power of love. Too true. It’s positively palpable. It was a real privilege to listen to them and already they’re contacting me with comments about Remember Remember. Lots of them started reading as they travelled home on trains and planes – what a heartening picture that conjures up. Others asked for their copies to be dedicated to colleagues and groups and special relatives and friends grappling with the realities of the disease. Every last one of them was so courteous and appreciative. If the book helps them to feel they are not alone, if it enables them to be even more sensitive, to care even better, it’ll have achieved its aim. I’m only sorry our one-to-one conversations were curtailed because in the event there were only three hours left to sign 600 books.

I’m indebted to my altruistic publisher, Luath Press, and to the wonderful staff at the Dementia Services Development Centre, for making this all possible. OK, the plans did go ever so slightly agley*, but the overall experience was fab! (Oh, and special thanks to Tony Marsh – lovely man as well as talented artist – and DSDC for the photos.)

* For the uninitiated: a Scots word for awry taken from Robert Burns’ famous quote: The best laid schemes o’ Mice an’ Men gang aft agley (From ‘To a Mouse’)

PS. Also during this past week, 45 organisations have united to form the Dementia Action Alliance. They say that by signing a National Dementia Declaration they are setting in stone their ‘very real commitment to transform the lives of people with dementia and their carers.’ They’re seeking early diagnosis, adequate support and help, and research towards a cure. All power to their elbow!

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Being all you can be

Remember RememberWell, it’s been a weird experience bringing out Remember Remember. After missing publication day because I was with my mother in hospital in Devon, I returned home for a few days to a pile of copies of the book. I felt strangely disconnected from it. And there was no space to just savour the moment. I was instantly faced with the challenge of psyching myself into appearing at a conference. Nothing exceptional in that, you might think; I’ve spoken at and chaired conferences for several decades. But this was different.

To begin with, it was a dementia conference – the Scottish Caring and Dementia Congress held at Murrayfield Stadium yesterday and today. My first dementia conference so I had no idea what I was going into. I was invited solely because I’ve written this novel, still warm in its covers. Before the domestic crisis down south, I’d intended to do loads of background reading to feel confident about dipping a toe into these waters. How would I be received? I mean … a novelist? Hello?

Second, I am a raw (as in about six weeks old) recruit to the world of living with dementia in the family. It’s quite strange to have had my mother slip from ‘perfectly mentally competent’ to ‘unable to express her opinions’, in one fell swoop. A tiny irrational bit of my mind still expects her to snap back to her old self. It feels like a parallel universe or a vaguely haunting dream. Things are touching me in unusual ways.

Third, my mind is split every which-way and at times these past few weeks I’ve had the concentration span of a gnat. Would I be able to keep focused on the questions or the arguments? I went secretly armed with lists of salient points in case emotion or fatigue or sheer mind-wandering exposed me as a fraud.

In the event, I had a fabulous, warm welcome, I was made to feel valued, and I didn’t need to resort to my secret weapon. But then, I was in the midst of about two hundred people who either live with the illness or work in the world of dementia, a cinderella area within medicine – people who believe in the best quality of life for those they care for, who fight against the odds for their discipline to be recognised and resourced. Talking to them was inspirational. Their innovative ideas, their passion and drive, their compassion, shone through. I have come away richer for having spent two days in their company.

There are hundreds more dedicated people out there who are giving their lives and energies to enabling people with dementia to be all they can be. Who have put care back into caring. Who take art, music and poetry into their lives, who take time to understand where aggression and apathy come from, who study and enhance environments and facilities … impossible to enumerate everything they do.

Several of the conference contributors have promised to review Remember Remember. If these special people believe it can contribute to helping others to understand what it feels like to live with or alongside this diagnosis then I shall feel as if in some small way I have been adopted by an elite family.

In the meantime I’m off to Devon again tomorrow. I’ve packed another stack of books for those journeys. No official reports amongst them this time. Joy of joys!

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Absent in body, present in spirit

Thursday: blog-day. I try to listen to Question Time on Thursdays too so if I haven’t posted my blog by then, the sight of David Dimbleby prompts me.

But this week I’ll be far away visiting my disabled mother, so I’m leaving a message for DJ to post on my behalf. If you’re reading this, he’s negotiated his way successfully and pressed the right buttons. He hasn’t done it before so I’m leaving it fully prepared in draft form before I go. No, don’t get me wrong, he’s perfectly capable, I’m sure – I just don’t want him spending hours juggling hyperlinks and searching the net for other blogs or sites. Not when he should be doing safer things like perching on a plank balanced between two stepladders painting a twenty-foot high ceiling and oiling a stained glass window. Both clamouring for attention if we’re to be half-way sane for Christmas.

Me? OK, I’ve hung the odd slice of wallpaper but mostly I’ve been meeting before-the-end-of-the-year deadlines. Writing an article (for a specialist journal) synthesising that stack of novels including dementia I’ve been warbling on about. Editing chapters and project proposals. Exploring different avenues for promoting understanding of the big ethical questions thrown up by modern medicine. Making new contacts, opening exciting doors for next year … watch this space. Anything‘s better than decorating!

Oh, and reading an amazing book my son recommended: Velvet Elvis, by Rob Bell. Strap-line: Repainting the Christian faith. It’s challenging. Not the kind of thing you gallop through. Beautifully written but big ideas that demand reflection. Odd really: it resonates with a lot of my thinking about how to understand the Bible and how to re-energise spiritual batteries, but I didn’t formulate my ideas until I saw them expressed so well. I’ve been boring on about it to DJ when he’s driving. Makes a change from speculating about my proximity to dementia, I guess.

I should be back in person next Thursday, trains, floods and God permitting.

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