Hazel McHaffie

Alzheimer’s

Doorstoppers

I’ve been thinking quite a bit about size lately. Not as in personal dimensions – although that’s obviously been a feature of my recent writing; no, I’m referring to books. Doorstoppers in particular.

Hilary Mantel booksTake Hilary Mantel‘s huge tomes for example – excepting her memoir Giving up the Ghost which I sped through in a couple of sittings. Wolf Hall and A Place of Greater Safety have been staring at me reproachfully from my shelves for ages, but I can’t quite bring myself to set aside a large enough block of time to plough through them. I’m not one of these razor sharp people who can have several books on the go at any one time and so afford to have a massive volume on the bedside table to dip into over many months whilst steaming through an alternative pile of quick-reads. I lose track of characters and story-lines far too easily. And books which impinge directly on my own area of expertise/current writing tend always to take precedence.

Ken Follett booksKen Follett‘s sprawling tales – each of these is two inches thick! – are another example from my library. I loved his The Third Twin which I read aeons ago, so I bought these three on the strength of that recommendation. They’ve remained unopened to date. Same reasons.

Likewise Penny Vincenzi and … but I won’t bore you with a list.

An exception though, has been Matthew Thomas‘ debut novel, We Are Not Ourselves. (An inch and a half thick, if you’re interested.) For purely pragmatic reasons it rose instantly to the top of my pile: it’s in my ball park and a friend gave it to me for that reason; but I feel a degree of urgency to read and return it because I know her husband is next in line for it. So I’ve persevered doggedly to the bitter end and not allowed myself to be deflected.

We Are Not OurselvesIt’s a sprawling tale about the Leary family spanning sixty years, tracking a college professor’s descent into Alzheimer’s and the effect on his wife and only son. It even has a chapter where the son is rehearsing for a debate on euthanasia! So yes indeedy, my kind of subject. But really! Does any fiction merit 620 pages of tiny text? It took Thomas ten years to write (in a one bedroom apartment with young twins); my own (impertinent?) judgement is he’d have been well advised to edit it severely and give the story more zing and pace. Comparisons can be odious but Lisa Genova‘s Still Alice accomplishes more in far less time and space.

It’s the massive annual Christian Aid Book Sale in George Street this month, so I’ve decided two things: to bequeath all my unread Follett novels to the cause (along with a boxful of others); and to resolutely set my face against buying more books until I’ve cleared some from my shelves. Snag is, most of the ones still jostling for attention I’m sure I shall love too much to part with even once I’ve read them.

 

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Cursed inheritance

As I promised last week, good news this time!

Eight or nine years ago I chose Motor Neurone Disease for the degenerative condition journalist Adam O’Neill is battling with in my novel, Right to Die; Right to Diea disease that will strike right at the heart of his being and his aspirations. So I was fascinated to find Lisa Genova chose Huntington’s Disease for her tough Boston cop Joe O’Brien in Inside the O’Briens, a disease that stops his career dead in its tracks and forces him to face the horrors of genetic inheritance.

Both MND and HD are frightening, crippling, fatal conditions that rob the person of control and dignity. Getting inside the mind and body of either an Adam or a Joe is very scary stuff. So, having been there myself, I was extra curious to see how someone else tackled the ethical minefields and personal challenges associated with such a scenario; especially someone with Genova’s credentials.

This time she has inserted occasional tracts of medical explanation about the condition into her novel to inform the reader, positioning herself as a scientist; but for me her real strength lies in her ability to describe the illness from the inside. She puts the humanity into the science, compassion into the clinical facts. The insidious onset before policeman Joe even suspects the truth. The sudden weird and inexplicable bursts of anger. An inability to process instructions. Finding it impossible to keep legs and feet still on parade … in police exercises … in a restaurant. And then, once he’s diagnosed, the inexorable progression. The involuntary indiscriminate throws – punches, food, cutting words – that label him as drunk, deranged or dangerous to passers by. The red rages that cause his wife Rosie’s black eyes, terrible destruction in the walls of the family home. The fear that won’t let him ever hold his grandson. The depression that makes him constantly check his gun is still loaded and primed.

We peer into his past when Joe recalls his mother’s antsy wild black eyes as she lay in a mental institution for years; condemned to be known as an incurable drunk. The questions hitting him now nearly forty years later. How could she have remained an alcoholic in the hospital all those years? Why had his father stopped taking Joe and his sister to visit her? Why had his strong dad wept like a baby? What lessons did she actually teach him?

The author powerfully captures the brutal reality through the eyes of the rest of the family too:

Inside the O'Briens‘Huntington’s isn’t the absence of moving, thinking, and feeling. This disease is not a transcendental state of bliss. It’s a complete freak show – ugly, constant, unproductive movements, uncontrollable rage, unpredictable paranoia, obsessive thinking.’

We see the dawning terror in his wife’s eyes. Her silences. Her withdrawals. Her desperate stroking of the crucifix round her neck, the beads of her rosary. Her binning of the symbols of her ingrained Catholic faith.

Then there’s the terrible implications for their four beloved offspring. Vegan yoga teacher, Katie, living life in ‘peace, health and harmony’. Ballerina Meghan, limbs and body and mind all supple, beautiful, desirable. Firefighter JJ, taking his health and fitness for granted, using it to save others; preparing for imminent parenthood with his wife Colleen. Rebel Patrick, sewing his wild oats liberally, experimenting with life. Each one of them carrying a fifty percent chance of harbouring this cursed disease. Nothing can change that fact. Nothing can halt, slow or reverse this terrible thing. Joe, their father, is powerless to protect them. Indeed it was he, their supposed protector, who handed on the poisoned chalice in the first place. And now he must stand on the sidelines and watch them all battling with the impact of their cruel inheritance. Only they individually can decide whether to take the test, if they want to know the truth lurking unseen in their own DNA. JJ and Colleen may not even choose on behalf of their baby son.

How should Joe deal with his burdens? Is there a way out? Should he take it? How can he best support his children? Should the youngsters go for testing? What are the implications if they do/don’t? Would I want to know?

I love books that are at once a gripping read and challenge me to think deeply – especially in the field of medical ethics. And even though I’ve been into these questions already myself as an author, I thought this book was brilliant and awarded it five stars. Beautifully written, compassionate, perceptive, engrossing, provocative. Genova at the top of her game again. Seems I prefer her as neuroscientist-turned-novelist rather than simply novelist. That could well be something to do with my own position on the spectrum; nevertheless the experience of reading Love Anthony and Inside the O’Briens one after the other, has taught me something of value for my writing too.

So, Genova has already tackled Alzheimer’s, Left Neglect, autism and Huntington’s. What next? MND, she says – or as she calls it ALS. Ahah! I await that novel with bated breath!

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Youthful altruism

The month of May has highlighted for me the amazing and heartwarming altruism of many people.

We’ve surely all been hugely impressed by the story of charismatic teenager, Stephen Sutton, using the limited time left to him to raise money for the Teenage Cancer Trust. Right up to his death he didn’t waste energy or time feeling sorry for himself but ‘felt privileged’ to be in a position to raise the profile of his disease (colo-rectal cancer) and do what he could to help move scientists closer to an effective treatment. Inspirational lad.

But for every exceptional headline-making person like Stephen there are countless others beavering away in their own quiet corner, doing their bit for mankind. And this weekend I witnessed a beautiful example of this.

The Edinburgh Marathon Festival was held over Saturday and Sunday here in Scotland’s majestic capital city; three of my own grandchildren (as well as my son and son-in-law) were running in it. And I was amazed at the sheer number of little tackers jumping about at the starting lines sporting tee-shirts emblazoned with logos for a variety of charities – connected with everything from meningitis and arthritis in children, to research into cancer and Alzheimer’s. They’d made the effort to raise sponsorship money; in so doing they’d simultaneously raised the profile of many different needs. And then their little legs pounded along the track to justify the support they’d acquired.

My grandson in the 5K

Granddaughter in her charity tee-shirtThe MC gave all these altruistic youngsters a special endorsement, as do I. Millions of pounds are raised in such ways but equally important, what a terrific attitude to inculcate into growing minds.They are helping to make the world a better place in more ways than one. I salute them all.

3 grandchildren wearing medals

 

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‘It is yesterday that makes tomorrow sad’

No two author appearances are the same: the venues, the audiences, the questions, the reactions, vary greatly. But of course, for the author, the subject matter is pretty constant when you’re doing a post-publication circuit. Me speakingI’m in the midst of this at the moment for Over my Dead Body so it made a nice change on Monday to sit in the body of the kirk listening to somebody else; watching and learning from their performances.

Sally Magnusson was the star attraction of a conference at the Dementia Centre in Stirling University, talking about her new book: Where Memories Go: Why Dementia Changes Everything. It chronicles her mother’s journey into dementia – ‘a vicious brain affliction that hijacks memory, personality and functional capacity’. The blurb summarises it as ‘both deeply personal and a challenging call to arms. Faced with one of the greatest social, medical, economic and moral challenges of our times, society must urgently reconsider how we look after the most fragile of our citizens.’

Sally herself has been a familiar face to us in Scotland where she regularly presents for the BBC; and of course, her father, Magnus was a household name before her. She comes across as someone I’d like to meet, so I went with high hopes … and a degree of fellow-feeling given that my own mother developed vascular dementia in the last year of her life.

Reproduced with kind permission from the DSDC and Tony Marsh, photographer

Reproduced with kind permission from the DSDC and Tony Marsh, photographer

I was not disappointed. Her experience, as well as that of another excellent speaker, (Katharyn Barnett, a diamond analyst, telling her similar story) echoed mine in several dimensions. Both women lamented the lack of understanding, knowledge and empathy, the need for ‘big, bold, top-down culture change‘. Both appealed for better resources and support. Amen to that.

Sally’s book itself? Beautifully written, moving and very readable. It doesn’t shirk the reality, the frightening, sobering facts about this horrible thieving illness which is now so much more prevalent in our aging society. But it’s softened and made more accessible and gripping by the personal elements. The focus throughout is her beloved mother, to whom she’s speaking, whom she wants to remember in vivid detail.

‘I tap late into the night, eager to round up your slippery self before it slides into yet another shape. It’s as if I have to catch you now, as if by the time I see you again tomorrow it may all have changed, as indeed there is every chance it will. If I can only pin you by the bullet point, secure you with headings, trap you in words, corral you within a list, then perhaps I can hold you beside me here for ever …’

In the telling, the Magnusson family come alive and they feel very real. In spite of her glamorous public persona, Sally is a ‘normal’ daughter, niece, mother, aunt, to her many relatives, rolling up her sleeves and getting stuck in with ordinary everyday things. Driving the elderly as well as the young around. Escorting, comforting, entertaining. Being irritable, losing her temper, regretting, lamenting. As she says, she too knows ‘the confusion in a middle-aged soul’, being ‘pinched so hard between two generations that we have trouble locating an identity of our own.’

Her father, Magnus, comes across as a rather detached figure, retreating to his study and his writing, leaving the running of a large household to the womenfolk. Mother, Mamie, once a highly respected journalist in her own right, is portrayed as a lively, loving, wise, colourful character at the very centre of the family. Sally recalls her ‘falling out of a punt into the River Cherwell, tumbling down a Glasgow manhole and half drowning during the vigorous self-cleaning cycle of an automatic French toilet,’ but always bobbing up again with insouciant charm and wit. Now though, she’s causing a different kind of reaction, a vague unease segueing into horrified realisation: losing her sense of curiosity, wandering around a guesthouse half clad, challenging two huge ‘gansta types’ on the London underground, needling her twin sister, forgetting words.

The diagnosis comes harshly and there are no magic bullets, search as Sally might among the world’s experts. The family regroup; the Mamie-sitting begins. In spite of their busy, high profile jobs, the Magnussons resolve to look after Mamie at home. They are articulate, energetic, insightful, relatively wealthy – they have the wherewithal to marshall support and an army of assistants. Not everyone can. But even with their resources the toll on Sally and her sisters is heavy – the constant anxiety, chaos, extreme fatigue, frayed nerves. Their own families suffer.

On the other hand, they see for themselves the benefits of familiar surroundings, constant family presence, the therapeutic value of the music which has been so central to Mamie all her life. They confront head-on the reality of decision making at the end of life – do we let her slip away or do we treat? – as a family: unencumbered by the constraints and pressures of officialdom, with their mother safe in her and their own world.

‘What mattered was that life still burned within you, fierce and lovely, and we could not let you go.’ However ‘… we know it could be different, perhaps even should be different, next time. Drug development is out of kilter. We have medicine to stop lungs filling up but not the brain eroding. We have drugs and vaccines to counteract or slow down almost ever disease that nature has organised to bring life to a close, but none to mend the mind. So thousands of old people lie in thousands of beds,waiting for a death we do our best to deny them for as long as possible. Better, perhaps, to face thinking about a time when the treatment might be allowed to stop.’

Over time they revisit their decisions as they see the life they have revived her for sliding into ever more debilitating levels: the ‘scorching emptiness’ in her eyes, the dislocation, the sadness, the fear, the outbursts of rage, the ‘tyrannical’ attention seeking, the inconsolable weeping, the hostility, the violence, the ranting and raving, the unearthly keening, the hallucinations, the ‘nightmare your life became’. But Sally finds the most harrowing moments are when her mother manages to rise above the fog sufficiently to articulate her feelings: utterly lost; hating her dependence on others. That was the worst stage for me too, when my mother was aware of her predicament.

Difficult as the behaviours are, the Magnusson sisters face other stark challenges.

‘What is threatening to defeat us daughters is not so much your behaviour as our emotions. Others, namely the stalwart women who look after you as a part-time job, seem often to manage you better than we do. We have kept a major role in what is now a 24-hour rota not just because the financial reserves are finite but because it is clear you want us. Yet each of us is haunted by a mounting sense of failure … Perhaps, we three sisters tell ourselves, we need to hand over the reins to people who are not so emotionally involved, who don’t find tears flooding into their eyes every time you lash out or look lost. Perhaps we must contrive to become breezy visitors rather than ragged carers.’

Nevertheless the occasional sparks of recognition, the lulls in the battle when they sang together, the rare tender touches, kept them persevering at home to the end, shored up by the team of professionals who tended to their mother’s physical needs. 

In the end Sally concludes, on a personal level, through this painful journey with her mother, she has discovered the true meaning of love – a love which she wants her own five children to understand. And on a more global level, she believes, ‘A nation discovers its truest dignity when it cherishes the dignity of those from whom it has not heard for a very long time. That much I have learned, beloved mother, from your living and your dying.’

The story isn’t new. So many thousands of other daughters have travelled a similar path, but perhaps the powers-that-be will listen to an attractive, articulate celebrity who has captured the anguish and the need so eloquently.

One final thought: Analysis of Iris Murdoch‘s writing reveals a change – simplified syntax and impoverished vocabulary – when Alzheimer’s started to destroy the connections in her brain. Mamie Magnusson simply stopped writing. I must listen well to critique on my own scribbling as the years roll on! Is this dread illness even now lurking under the lamp post outside my window?

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Be careful what you wish for

Well, my latest novel, Over my Dead Body, has finally left my safekeeping and gone out into the big old world for review. It’s always painful to make that leap. As the adage goes, Perfection is always one more draft away, and I could tweak for ever. But there comes a point where you have to say enough’s enough and let it fly the nest.Manscript of Over My Dead Body

However, the characters are still very much living here with me. I keep waking at 4 or 5 in the morning and listening in to their conversations.  And I confess I have sneaked back to the manuscript several times and changed the odd thing or two. So I’ve decided to give myself a new deadline and a new task to try to break the cycle: get all my folders (containing information for other novels) up to date by the end of this week. And that’s where today’s topic came crashing in. A disturbing story from the week’s papers.

The first headline jumped out at me: Belgian twin brothers choose euthanasia rather than blindness. Assisted death’s one of my pet subjects, as you know. The second headline ran: Euthanasia twins ‘had nothing to live for’. Marc and Eddy Verbessem were 45 years old, both cobblers in Antwerp, who’d lived together all their lives. They were both born deaf, and developed their own form of communication. They also suffered from a whole range of other genetic medical problems.

Now, just in case you hadn’t realised, Belgium is one of those countries where euthanasia is allowed if those requesting it are able to make a sustained and competent case for it, and if a doctor judges that they’re in unbearable pain. That’s been the case since 2002. But … neither of the twins was terminally ill; neither was in extreme pain. They’d sought death because they’d now found out they would soon go blind. They couldn’t bear the thought of being unable to see each other again, and losing their independence. Think about it for a minute. Is that adequate justification for killing two middle aged men, d’you think? Would you do it?

The Swiss position, which we hear much more about, is different. There the patient must be able to take the lethal dose themselves – assisted suicide. Would you find this alternative more acceptable?

The Verbessem brothers’ local hospital turned down their application for euthanasia. Indeed it took them almost two years to find any institution that would administer the lethal injection. Two years! Imagine what that was like. The doctor who eventually agreed considered that there was ‘unbearable psychological suffering’, (a subjective assessment to some extent at least) and the deed was finally carried out on 14 December.

I read on. And found a chilling additional note in the article: ‘Just days after the twins were killed by doctors, Belgium’s ruling Socialists tabled a legal amendment that will allow the euthanasia of children and Alzheimer’s sufferers’ … ‘to take better account of dramatic situations and extremely harrowing cases.’

What would you say to that?

Not every one agrees even in Belgium. Last December the European Institute of Bioethics based in Belgium published a report that expressed concern about the absence of effective controls. It notes that over a period of 10 years and 5,500 cases of euthanasia, not one had been referred to the police for investigation. They fear the interpretation of what is allowed is spiralling out of control. What would you say?

We so often skim articles and books picking up the main thread but not pausing to consider the reality or consequences of what we’ve been told, and I was in danger of doing exactly that with this story. But the more I read the more I was challenged. So the thought for the day on my perpetual calendar was particularly apposite: Readers are plentiful; thinkers are rare. (It’s from Harriet Martineau – a Victorian writer and social theorist of some repute, in case you haven’t heard of her.)

This snippet certainly made me think.

(Apologies if you have more accurate knowledge from the inside; I could only go by what was reported in several papers and on the net. Don’t hesitate to correct me if you know better.)

 

 

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As good as Jodi Picoult or your money back?

Time to return to the topic of that sticker I mentioned a few weeks ago, as seen on The Midwife’s Confession: ‘As good as Jodi Picoult or your money back.’ Similar to the one on my own latest novel: ‘If you like Jodi Picoult you’ll love Hazel McHaffie.’ Seeming even more relevant now because at my book launch last week I was introduced as ‘Scotland’s Jodi Picoult’!

Question is: Is the comparison a good or not so good idea?

I confess I’ve only just discovered Diane Chamberlain, the author in question. My daughter gave me one of her books for Christmas, and I bought a second one on the strength of the blurb on the cover. I read them both in four days during the Christmas holiday break.

The resemblance is obvious from the outset – before you even open the book. The pretty feminine covers. The personal challenge: ‘A lie will save one family, the truth will destroy another. Which would you choose?‘ Both very Jodi Picoult.

So what about inside? Was this author as good? Would I be due a refund? Should I be glad or sad that my own latest book has a similar slogan?

The Midwife's ConfessionTara, Emerson and Noelle are close friends, so the two younger girls are devastated when Noelle is found dead after taking an overdose of pills. But as they sort her possessions and talk to other people, facts come to light which show them that the Noelle they knew was a fiction.

When they unearth a letter revealing a hideous secret, they are torn by indecision. If they tell the truth it would destroy a family; but by maintaining the lie they would be perpetuating the grief of another. Add to this a twelve year old with recurring leukaemia loaded with steroids and fighting for her life; a dead baby; surrogate pregnancies; and you have a flavour of the intense emotional and psychological undertones of this story.

The multiple first person voices style is very Picoultesque, but there the similarities end. No court scenes or legal ding-dongs. No stereotyping. No homespun philosophising. Indeed, Chamberlain’s psychology is altogether much more convincing and less contrived than Picoult’s. Not surprisingly perhaps since she’s a trained psychotherapist.

Breaking the SilenceSo what of the second of her books that I read? Breaking the Silence is written very differently. All in the third person too. Instantly I feel a lift of spirits. Here’s an author who rings the changes. Who’s not formulaic or predictable. No rut in sight. My kind of gal.

The story weaves between the present for astronomer, Laura Brandon, and her daughter, Emma, and the past life of former nurse, Sarah Tolley, now an old lady with Alzheimer’s.

Moments before his death, Laura’s father makes her promise to visit Sarah, who’s in a retirement complex, but whom she’s never even heard of before. As a consequence of her doing so, however, Laura’s husband commits suicide. Her five year old daughter, Emma, witnesses the shooting and now refuses to talk and is clearly terrified of men. On the advice of a child therapist, Laura contacts Emma’s biological father, Dylan Geer, a hot air balloonist, who was unaware of her existence but becomes mesmerised by this mute child.

But as this father-daughter relationship blossoms, Laura becomes increasingly obsessed by the stories emerging from Sarah’s fading memory. She starts to unravel a tale of love, despair and a terrible evil that links them all.

Chamberlain’s training and experience in psychology have given her a genuine understanding of how people tick, how relationships work, helping to authenticate the actions and reactions of her characters. They ring true. Having had to observe professional confidences herself (like me), I think she understands the capacity of some people in positions of trust to bear a hefty burden of secrets, and the inability of others to do so. Lies and deceptions play a large part in both books.

Chamberlain says of her novels that they are ‘part suspense, part mystery, part romance and one hundred percent family drama.’ A fair assessment. The suspense and mystery elements keep the pages turning effortlessly. I was particularly gripped by the stories of the CIA government approved mind-control experiments that took place in the 50s and 60s in psychiatric hospitals in the US, about which I’d heard but never understood in this intensely moving way before. No wonder this was the inspiration for Breaking the Silence. Very clever.

But I must confess the coincidences in both books stretched my credulity somewhat, especially in The Midwife’s Confession. OK, they tidied up the story lines but they lacked plausibility for me.

So, will I be reading more Chamberlain? Probably. (And keeping my fingers crossed that she doesn’t pall like Picoult.) Will I be claiming a refund? Happily, no.

What then of that controversial sticker: did it help or hinder? Well, it meant the book caught in my antennae initially, which was good. Although for anyone who really doesn’t care for Picoult, it could have had an unwarrantedly negative impact. So swings and roundabouts there maybe. It also made me compare the two authors throughout, which had pluses and minuses for Chamberlain. But for me overall Chamberlain came out of it well.

And for Saving Sebastian? At the moment the jury’s still out. Time will tell. And your input … please!

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New Year, new impetus

Well, it’s here! 2011. And a very happy New Year to you all.

The bells rang, the pipes skirled, 80,000 people partied in the streets of Edinburgh to the thunder and shimmer of thousands of pounds worth of fireworks … and yes, it is worth saying, because the official celebrations have been cancelled before, and the jolly old weather certainly threatened to be agin us this time.

Six years ago we took a party of guests to our usual vantage point shortly before midnight and … waited … and waited … and well, nothing happened. Apparently there were ‘safety concerns’. In our embarrassment and frustration we instantly thought Thou-shalt-not-play-conkers-without-safety-helmet-plus-padded-gloves-plus-visors writ large. But nobody wants a fatality for the sake of a mere pyrotechnical spectacular, and we learned later it was something to do with a dodgy roof and the strength of the wind. At least that was the official version.

But it’s not just dynamite that has ignited the change to a new year. The bells have been ringing for other major shifts close to my heart. Indeed the news during this past seven days has been jammed full of my kind of subjects. In no particular order (as they say on ‘talent’ shows) …

Organ donation included on driving licence applications
From July drivers applying for a licence will be asked to indicate which of the following applies to them:
Yes, I would like to register on the NHS Organ Donor Register
• I do not want to answer this question now
• I am already registered on the NHS Organ Donor Register.

It’s an official step towards increasing the pool of donors. Around 90% of people favour donation but only 27% are registered donors. And given that about 1,000 Britons die each year for want of an organ, and thousands more wait an indecently long time for one, we need to do something. Maybe there should have been one more question:
Would you be prepared to receive a donated organ for yourself or someone you love?
The novel I’m writing just now is about organ donation so I can get quite fired up on the subject.

Sir Elton John has become a dad
Put aside for a moment any qualms about the 63-year old temper-tantrum-on-short-legs with a £290,000 flower habit as a role model, and disregard the rumours about payment to ensure the birth happened on 25th December as the ultimate Christmas present, and think instead of the whole picture of a financial arrangement between an unknown surrogate mother in California and an aging, overweight, homosexual with dubious priorities. And spare a thought for the resultant offspring: Zachary Jackson Levon Furnish-John.
Admittedly the pop star did try recently to adopt an HIV-positive toddler from a Ukrainian orphanage, but he was denied on the grounds of his age, and the fact that his civil partnership with David Furnish was not recognised. So what isn’t good enough for an abandoned Ukrainian is suddenly acceptable for Zachary? Hello? How many tribunals in this country would grant permission for such an arrangement without the pressure of fame and fortune, I wonder? OK, it did become legal in April here in the UK for two men to have a child by a surrogate and to have both their names on the birth certificate. But we aren’t talking about your average ordinary man here. Children are not commodities. Nor are they fashion accessories.
Surrogacy was the subject of my 2005 novel, Double Trouble.

A nine-year old becomes a bone marrow donor
Robert Sherwood is only nine. His brother Edward is just five. But Edward has aplastic anaemia; his bone marrow fails to produce sufficient new blood cells. Robert’s donation has the potential to save his brother’s life. But … should he have been subjected to this procedure before the age of informed consent? Does the end justify the means? Should he be permitted to say no?
It’s the bread and butter of my working life!

A grandfather has become the first to donate an organ to a grandchild
John Targett, aged 59, couldn’t bear to see his little one-year-old grandson growing sicker and sicker as a result of biliary atresia. So he offered part of his own liver and had the operation just before Christmas. What a gift: the gift of life.

Another British person has ended his life in Switzerland
Andrew Colgan was only 42 (not much older than my son) but he’d suffered from Multiple Sclerosis for ten years and his condition had markedly worsened recently. He died in that now infamous Dignitas room in Zurich. My own feeling is of immense sadness that this young man had been desperate enough to go abroad for a solution to his terrible dilemma.
I really agonised over these questions for Right to Die; I’m still struggling with them three years after publication.

Volunteers keep libraries open
A new report has revealed that libraries in England are increasingly being staffed by volunteers, to prevent closure under cost-cutting exercises. And this at a time when it ought surely be a priority to make books available to those struggling to find employment or to make ends meet. Books can change lives. Penny-pinching in this area is surely stealing vital resources from the future.
Hundreds of people only read my books as library copies. I want them to continue to have this opportunity. It represents something much more exciting than sales figures.

Bishops defend the rights of Christians
Lord Carey, former Archbishop of Canterbury, has urged the prime minister to review the laws which discriminate against Christians in our supposedly-Christian country. And the Bishop of Winchester has reinforced this message. We’ve all heard about the airline worker denied the right to wear a crucifix; the couple denied the opportunity to foster children because of their religious scruples; and the bed-and-breakfast proprietors who won’t take same-sex couples in double rooms in their guesthouse. The law does seem to have sided against ordinary Christians following their consciences.
Religion is closely interwoven with law and ethics and this subject too is a matter of ongoing interest to me.

There was something too about managing Alzheimer’s more cost effectively but I can’t seem to find that. No, it’s NOT a joke about dementia: I genuinely can’t. I looked and in the search found this site which might be comforting for those people struggling alongside this disease. But in the absence of a link to the news item I was looking for, I didn’t want to ignore another topic that I’ve delved into in depth for one of my novels, Remember Remember, because of course, it leapt out of the page at me.

So you see, just in a few days I’ve had my belief that people do care about ethical dilemmas reinforced over and over again. A great spur to another year of writing.

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Reflections on 2010

Ahah! My last blog for 2010. And inevitably one looks back over the year.

The most stressful event?
The decline and death of my mother. I’ve missed her very much over this Christmas period in countless little ways. But I’ve also been more acutely aware of what a wonderfully supportive family I have. Bless them all.

The most surprising?
Recognising the necessity to relinquish some commitments for the sake of my health – and DJ’s sanity! – and what’s more, actually finally doing so. Although one relinquishment in particular caused me considerable sadness: the Institute of Medical Ethics. A fantastic committee to work with, and an organisation that has been so nourishing and encouraging of me for many, many years.

The most challenging?
Two events jointly share the award: judging the Institute of Ideas debates; and being a member of a Data Monitoring Committee for a major international clinical trial. Both forced me well outside my comfort zone and underlined my limitations. These are places I won’t be going again – there, it’s written in stone!

The most unexpected?
Not finishing a book I started. That’s a first. The book was The Inheritance of Loss by Kiran Desai and I just had to abandon it. OK, it won the Booker prize but I’m afraid life’s too short for a novel that’s that much of a struggle for me now. (Hmmm. Looks like my obsessions are starting to fray at the edges!)

The most encouraging?
Meeting new people in relation to my novels. Because I write about medical ethical dilemmas, I come into contact with families who’ve lived through similar experiences in real life. This year most notably, heroic folk caring for loved ones with Alzheimer’s, and those who have donated organs for transplantation – their own or those of their loved ones. And I am constantly awed and humbled by their generosity in sharing their stories. They remind me all over again why I took this turn in my career. And they encourage me to keep writing. I salute them all.

The most therapeutic?
The ongoing unconditional love of my four fabulous grandchildren.

And speaking of them, quite a number of you have written asking what I did for them in this year’s Christmas story. If you’re a new visitor, I should explain, every year I write a story for the children (currently aged 10 to 5), I make costumes and scenery, etc, and they act it out (totally unrehearsed). DJ takes photos throughout which we use to illustrate the book produced soon afterwards.

So, here’s ‘the stage’ for this year’s production …The scene is set And (with kind permission from parents) the principal characters: The Bag Lady ..The Bag Lady… and the supporting cast: three Shadow People (street children) …The Shadow PeopleInside The Bag Lady’s 40+ bags are all sorts of props and games and edibles. And, through playing and talking together they each discover the real person behind the stigma. And learn the importance of treating everyone kindly, and as you would like them to treat you. But it’s all sweetened with magic jelly babies … and talking dragonflies … and monitors that measure sportsmanlike qualities … and a little sleight of hand … and some rather scary Gurgling Gozers that sink their teeth into carotid arteries under provocation … and a crazy but lovable dog called Digby … the usual kinds of story-telling tricks. And of course, the now traditional banquet.The banquetAll good wholesome fun. So thanks for asking.

But before I get back to editing the book, The Bag Lady and the Shadow People, (don’t forget you heard about it first here on VelvetEthics!) it’s time to say a big thank you to YOU for reading my scribblings. The weekly blog can feel rather self-indulgent, I so much enjoy writing it. And then you tell me you’ve been moved or amused or challenged by something and I get a warm feeling knowing you’re sharing my musings and struggles.

I do sincerely wish you all peace and happiness in 2011. And a softening of the hurt if you are one of those for whom 2010 has been a tough year.

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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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Dementia? Think again!

With my own book about Alzheimer’s safely published, and my mind more to grips with the fact that I’m now living with dementia in my private life, I’ve had space to go back to reading about the subject. Facts this time, more than the fiction I’ve warbled on about before.

And it’s rainbow time.

But before I antagonise anyone by seeming too idealistic, let me hasten at the outset to acknowledge a basic reality. No-one wants to develop dementia. No-one. Neither patient nor family will embrace it willingly. If it does snake its way into our lives, it’s natural to be sad and to grieve for all that is, or will be, lost. But the very fact that we can’t reverse the process makes it doubly rewarding to learn that the glass can still be half full, or maybe a quarter, or … And having been through a kind of grieving process myself this year, I want to share something of that discovery.

I’ve read too many things to bore you with anything comprehensive, but three books make me want to send an email to everyone who is dealing with dementia in any capacity. They are

Contented Dementia by Oliver James
And Still the Music Plays by Graham Stokes
I’m Still Here by John Zeisel

All three are
– written by people with real hands-on experience
– built on the premise that understanding the inner world of the person with dementia can have a considerable effect on the lives of all concerned
– designed to be read reflectively not quickly
– starting points that prompt contemplation, questioning, and perhaps even a little experimentation.

You might find aspects of them irritating at times – I know I did! But I’m an impatient ratbag anyway. Bear with them anyway. Why?

Contented Dementia describes in detail a method of responding to someone with dementia in such a way as to minimise confusion and distress, and to steer them into a safe and happy place. The strapline captures the sense: 24-hour Wraparound Care for Lifelong Well-being. It puts a different slant on behaviours that are potentially trying – even the endless repetition! – and shows how they can be made to work for good. This book is written by a psychologist, and I was much struck by his introductory comment at a session I attended in the Edinburgh International Book Festival: ‘I’m probably the only man in the country who, if I develop dementia, would like to be cared for by my mother-in-law!’ Some recommendation, eh? But it was she who devised the Specal scheme outlined in his book.

And Still the Music PlaysAnd Still the Music Plays is a series of very readable stories about people exhibiting challenging behaviours. It provides insight into what might be causing someone to wander, to be agitated or aggressive, and how to channel that understanding so as to prevent or reduce distress. This one is the easiest and most entertaining read of the three, but gives a way through the most demanding of experiences. And it offers a glimmer of sanity for carers at their wits end trying to deal with violence and severe hostility.

I'm Still hereI’m Still Here offers a gentle, artistic approach, describing ways of connecting with abilities and emotions that remain intact, and of enhancing the quality of life of the person with dementia (and their loved ones) by maintaining those connections with people and the wider world. There’s more medical and specialised language in this one but it opens up avenues to pursue which are accessible and available to most of us – art and culture, drama, meditation.

So, to anyone who is working alongside or living with people with this illness, I recommend one or more of these books. To everyone else I say, if you avoid contact with people with dementia, or have a horror of the disease yourself, give it a whirl. It’s possible that knowing more could just reverse your opinion, increase your capacity for compassion, and even enhance your own life.

As for me, I’m lost in admiration for the people in these books who have cared enough to search for understanding, and who have enriched the experiences of those who would otherwise have been left anxious, agitated, apathetic or aggressive. I salute them all and hope their philosophies will percolate far and wide, and make the world a better place to live in.

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