Last week, as I wrote my blog, you may remember, I was cooking wee delicacies for the nibbles (the very ones pictured below), and juggling several other competing demands (humdrum domestic as well as professional ones), wondering if I’d ever be ready on time.
Anyway, on the day, the food looked passably edible. You can’t go far wrong with fresh Scottish strawberries now, can you? And a 100% silk overblouse I acquired from a wonderful lady in the Royal Highland Show a couple of years ago allowed me to pretend I had nothing better to attend to than the shape of my cuticles and the shade of my eye shadow. Did anyone guess that up to five minutes before guests started appearing I was wielding spreading knives, and sparkling wine glasses, and tangling with clingfilm, I wonder? Actually, doing the physical preparation myself this time (my own choice, I should hasten to add. Well, you know how obsessive I am) was quite therapeutic. Stopped me getting too bogged down in mental preparation – of the ‘I’d-better-read-every-report-and-academic-paper-and-legal-case-on-the-subject-just-in-case-some-omniscient-wiseguy-challenges-my-credibility’ variety.

The sun shone brilliantly, lots of lovely people came from all sorts of different professions and backgrounds and perspectives, and they mingled beautifully. Everyone was polite enough not to spit the food back at me, and they were so responsive to cue that they all sat down spontaneously after early mingling without so much as a raised voice, or a bell, or a gong in sight.

But I’m sure they’d all forgive me for awarding the gold medal for the night to the chairman, John Killick. He’s a poet who works closely with people who have dementia, encouraging communication and creativity – hence his role interviewing me about a book on the subject. You can read more about him on www.dementiapositive.co.uk although his site doesn’t do justice to his international reputation. (Nor does this photo, but somehow importing it lost something of the sharpness of the original. DJ and I laboured long and hard to rectify this, but to no avail. So sorry about that.)

Anyway, John’s a delightful man, and on this occasion he set a perfect tone for the evening with his relaxed and amusing approach, alongside a total grasp of the subject under discussion. We organised the programme much as a book festival interview, and John had dug up some impressively insightful questions for me on the story I’d written. It’s always gratifying for an author when someone has analysed and thought about the structure as well as the content of their book, and John had taken this to an extraordinary level.

One other guest deserves a special mention too. And that was Cornflower. She writes a hugely successful blog about books (recently ranking number four in Wikio’s Top UK Literature Blogs) and was kind enough to review my last one, Right to Die, last year. If you haven’t visited her site you should. (She’s the pretty smiling one with the bag large enough to carry lots of books around.) This was my first time meeting her (and Mr Cornflower) in the flesh, but we’ve already arranged to have coffee together to have a proper chat. If you’re the author at a launch it behoves you to skim over the surface of the pond hovering superficially beside every guest, not dive deep in one spot with any one individual. Regrettably. There were lots of diving companions I hankered after on Friday night.

But hey ho, partying over, it’s now time to get back into the current book about a young widowed mother and her two little girls who’re involved in a serious road accident … and a family faced with a request for organs … and a queue of sick people on the transplant waiting list … I think I’ll soon have got sufficiently to grips with the questions and issues to be ready to sally out into the real world and spend time with transplant surgeons and coordinators and recipients and … well, who knows? It’s a big world out there! And an endlessly fascinating and challenging one. One of the guests at Friday’s launch knows someone who became a live donor and introductions are forthcoming. Oh, yes, that was another bonus – all those links and connections we made that will ripple on. Great stuff.

One is an exercise machine. It was bought at the time I started the sedentary life of a novelist – for a bargain price, I might add, as befitted my new impecunious way of life. The perils of working at a computer, at home were obvious – and steps should be taken to counter them from the outset, I reasoned. Initially I energetically increased the numbers of pushes and pulls on a regular basis … acquiring a perky sense of smug self-righteousness as I huffed and puffed and increased my cardiac output … well, until the novelty wore off, that is. Imperceptibly the hefty machine metamorphosed into a white elephant.

When a crowd of 12 visitors simultaneously descended for a week-long stay, I popped the said cumbersome object out of the way, and somehow it didn’t come out again when I reclaimed my territory. Layers of dust gathered. This week another general reshuffle associated with guests (is there a theme emerging here?) inspired me to move it back into operation. It has now graduated to a space beside my desk in the study. The plan (in my head at least) is that I hop onto it periodically to get the circulation going, and tone up the flab. Hmmm. Let’s see how long it takes before it merges into the background and becomes invisible again.

And then there’s DJ’s trombone. The offspring – for whom he’s an ongoing problem in the present department – picked up on a verbal if casual declaration of interest, and kindly treated him to one a few Christmases ago. For weeks he fiendishly practised In the Bleak Midwinter until he was technically (if not artistically) competent. He performed once in public. And since then this gleaming piece of brass elegance has remained locked in its case, still loved but remarkably uncontaminated by recycled breath.

But I’m certainly not one to judge. At the height of my earning potential I treated myself to an overlocker, an expensive luxury for which I’d yearned for decades. (In case you are one of the many who aren’t into such gadgets, it’s a form of sewing machine that over-sews the edges and seams of things to create a beautifully finished edge.) I used it to give a professional touch to the wedding dress I made for my daughter eleven years ago, and nearly gave myself a nervous breakdown grappling with all those threads and intricacies. It has since tormented me on a couple of other occasions, but over time a degree of animosity has built up between it and me to such an extent that I eventually decided to give it away. My daughter would be a much safer custodian of it than I. She is now overlocking with gay abandon, scoffing at my dismal failure to apply myself intelligently to such a ‘simple’ task. But this story has a happy ending. When I need anything finished off now, I simply hand her the garment and back it comes beautifully complete. Not a bad deal, huh?

I’m sure there’s a moral lurking in this somewhere and it relates to … use it or lose it, or something of that ilk. The same thought came back to haunt me again this week when I handmade (as opposed to machine) a batch of bread rolls using fresh yeast for the aforementioned guests. Now, I should confess that for most of my married life (40 plus years) I’ve made my own bread, but then six years ago I sank to buying a breadmaker – just for a change … occasionally. That was the thinking but then the results were so good that imperceptibly it took over; I became more and more lazy. Something about having a dog and barking yourself springs to mind. But ahah! Visitors staying this week? Yes, of course they’d love freshly made, REAL bread for breakfast, wouldn’t they? The recipe was indelibly etched on my brain; indeed I’d never bothered to write it down since it was in constant use. The dough rose beautifully … the shaped rolls browned perfectly … tasting time arrived … alack and alas, the finished product looked wonderful, but it was sadly under-salted. Pride forced me to make a second batch. An unheard-of occurrence. Yes, you’ve twigged. Failure to keep the skill alive meant I nearly lost it.

I guess I’d better keep scribbling …!

Oh, just so you’re in the picture, the launch of Remember Remember is finally happening on Friday 11th – the day after this post goes out – so more of that next time. I’m busy baking titbits for it in between thinking about what I might say. Do I smell burning …?

In January my stamina was tested sorely, because I was suddenly and unexpectedly dealing with writing/editing three books simultaneously – and of course couldn’t rest till all deadlines were met! One book was Remember Remember about which you’ve heard ad nauseam. The second one was the Christmas story I create for my grandchildren annually which can only be completed and illustrated after the festive season, but I like to hand to them early in January while the actual event is still vivid in their minds.

The third one was my mother’s life history. Ahah! A new topic of conversation. For about four years Mother has been talking to me about her past and I’ve been recording her memories, writing them up on the computer when I returned home. It began as a form of therapy when she went into residential care following a disabling stroke, and it was lovely to see her become animated and loquacious as she relived her past … as far back as three years of age. Sometimes she’d spontaneously fill in details when we were doing unrelated things – like shampooing her hair or driving out somewhere. We developed a pattern; each time I visited I introduced a different facet of her life, and away she’d go. I learned things I’d never heard before.

This past year, though, it became increasingly apparent that the memory was not as reliable as it had once been. Time to draw a line. But her 90th birthday was looming … I made the decision to edit and polish the text in order to produce a bound book of her recollections to celebrate that.

Sadly it turned out to be just a few weeks too late. Now she is unable to read it herself, or to concentrate for any length of time on the stories she recounted so graphically. Nevertheless she was presented with a copy on her birthday and she symbolically gave her story to each of her children. A treasure for us all.

And even for her those hours of remembering aren’t wasted. Her written recollections will now form the basis of an aide-mémoire so that others can reminisce with her and hopefully prompt fleeting memories. How glad I am we shared those precious times and stories while we still could. So often even the best of intentions fall by the wayside.

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!

As you know, I’ve spent years immersed in the arguments and theories around medical ethics. I’ve also been my mother’s nominated proxy for medical matters for five years, during which time I’ve steered her safely through a number of decisions relating to her health and wellbeing. No big deal.

Until this past five weeks. This time I’ve really had to stand up and be counted. Because Mum has now lost the capacity to contribute in any meaningful way to the decision-making process. Not even to nod approval. And big questions have arisen which need answers.

Suddenly the responsibility seems much heaver. I confess this has taken me by surprise; objectively I’d have expected it to be a natural progression from the experience up to now when in reality I’ve been spelling out the facts and options, and drawing the conclusions for her, and she’s agreed or not. But this time there’s a conflict between what I know she’d choose and what we believe to be better for her. And in real life, practicalities, limitations and logistics make for much more hazy and messy pictures that the textbooks suggest.

Fortunately I have five siblings so I’m not alone in this, even though it’s my name on the papers. We’ve all been involved in lengthy discussions about competing needs, wishes, interests, rights and responsibilities. But step by painful step we’ve inched towards a solution with which we all agree.

In this case we started off with more than one ethically defensible answer – three in fact. Events have ruled out one of them, leaving two. Compromises have been made and we have now made our choice on Mum’s behalf. We have done our best; we can sleep with a clear conscience. And believe me, sleep has been somewhat elusive of late.

Through this experience I’ve come to the conclusion that there can be no substitute for agonising. And we have certainly agonised over Mother’s predicaments. It’s been hard to concentrate on ordinary everyday life. But now the decision is made I hope to get back to some semblance of normality. After all, in my absence, the new book came out … there is work to be done!

I’m particularly thinking today of Peter James whose Dead Tomorrow I took with me to Devon.

It’s a story about a mother whose young daughter desperately needs a new liver. And about a detective who knows what devastating loss feels like and who suspects human trafficking is taking place on his watch. And about youngsters living on and under the streets of Eastern Europe. And about bodies being dredged up in Brighton minus their major organs …

OK, this isn’t the kind of book that wins the Mann Booker prize. But it is the kind that makes you walk into a lamppost. And it leaves you with lots to think about. How far would I go to save my daughter’s life? How long would I wait before having a missing loved one declared dead? How much would I give up to help street kids abroad? What should I do about the desperate shortage of organs for transplantation?

As readers we all have our preferences. One man’s meat … as they say. But me? I like books that ask these kind of questions. Well, I would, wouldn’t I? Because that’s the kind of novel I write too. Only a couple of weeks now and my sixth one, Remember Remember, should be out. And I start a run of appearances at things. Most of March looks a bit crazy on the calendar so blogs might be brief!

And I’m hoping that Bertrand Russell got it wrong when he said:
Many people would sooner die than think; in fact, they do so.
Because encouraging people to think is what I’m all about.

But Russell also said:
I think we ought always to entertain our opinions with some measure of doubt. I shouldn’t wish people dogmatically to believe any philosophy, not even mine.
I’m with him on that one. In my novels I always leave lots of scope for my readers to make up their own minds.

Temperatures up here have sunk to minus thirteen – minus sixteen a bit further north. It’s snowed every day except one for three weeks now. We’ve slipped and slithered to a few events – the ones that weren’t cancelled – but the roads have been deadly.

But it’s stunningly beautiful. I keep reaching for the camera …
]
… with due care, of course. Don’t want to fall and break that expensive lens … or both my arms … and end up totally helpless … like someone in the advanced stages of dementia … like my character, Doris Mannering, in Remember Remember … Fanciful? Yes. But then aren’t all creative writers? Imagining yourself into a person or place is what it’s all about.

And I’ve been doing a lot of imagining this week. It’s the big edit. ‘Be severe,’ said my editor. And ‘kill the baby’ (which in common parlance means, erase the bits you love best). I’ve been severe all right! Twenty-eight thousand words have been cut. That’s more words than many a dissertation. And every one of those twenty-eight thousand words has been thought up, written down, read several times and now deleted. For ever. Weird way of filling your time, huh? But fortunately for me I’m sufficiently distant from the original draft for it not to be too painful. There’s something to be said for publishers’ delays after all!

I finished this mammoth stint at 10.30 last night and sent it off to my editor. But then, in the night … you know about my subconscious mind … I had an idea … As the saying on my old computer had it: Perfection is always one more draft away. And because we’re never satisfied, we go on … and write another novel … and another … always hoping … this time …

So, it’s Christmas Eve. I’ve been immersed in the editing of Remember Remember this week – a brain-splitting session with my courageous editor on Monday drove me back into it. But today it’s time to down tools and take a few days’ break.

I’ve been having a ball creating a Magical Forest. Each year I write a story for my grandchildren and they act it out; DJ takes photographs throughout, and in January we present them each with an illustrated book of the story.

This year preparation involves making magical trees – the chocolate tree is destined to become a favourite, I suspect. And there’s a stone which mysteriously lights up when the children (actually forest pixies – well, I come from Cornwall) touch it when they’re energised by magic from the chocolate tree. A sort of mini-Geiger-counter. The photos show the staircase in the process of being converted into a forest. If you thought you had problems with needles shed by one tree …!

Once 27th is over I’ll be back to rooting out inelegant juxtapositions of metaphors, scanning for homophones, and pruning adverbs, but for now a very Happy Christmas to you all, and thanks for visiting my blog.

Or are you struggling to remember where you put the list of freezer-foods you absolutely must buy before Aunt Maud descends in five-and-a-quarter hours time? Or going crazy with wee Tommy’s repeated demands to know how many times he’s got to clean his teeth before Santa fills his stocking with sugary treats? Or worried sick about just where teenage Sally, wearing not much more than 6 inches of skirt and a sprig of mistletoe, has got to at 2.30am? Or running late again because Billy has just wet himself all over your new suedette skirt just as you stopped to answer the phone on your way to the car on the way to collect Pippy from school en route to swimming lessons which will end two minutes after you should have left to go to the station to collect Granny and Uncle Herbert?

Spare a thought this Christmas for those whose daily lives are punctuated by such anxieties 24 hours a day, 365 days a year … with no hope of anybody growing out of anything.

I refer of course, to families coping with dementia. (Nothing new there then, I hear you mutter.) But it’s all down to the BBC this time. With Remember Remember due out in a couple of months time, I really couldn’t ignore two programmes going inside dementia care homes with business impresario, Sir Gerry Robinson – although I have huge problems with the whole matter of filming people who are unable to properly consent; but don’t get me started on that topic! Anyway, the second programme in the mini-series aired on Tuesday of this week. I was too disturbed by the first one to even mention it in my last blog. (A blessing to count there then.) I needed time to think about the issues it raised, calmly.

As some of you know, I have a close association with a number of homes for the elderly, which include those with dementia. I’ve been involved in a voluntary capacity for many years, and I’m privileged to be allowed alongside, and into the lives of, people for whom the boundaries of time and place are now sometimes very hazy.

A fundamental given, in our organisation, is that they are treated with respect and dignity; every effort being made to know the person they were before, in order to maximise the potential of the present and the future. So Gerry Robinson’s experiences shook me to the core. Managers with no training in dementia care whatever, running these homes? Bell-pulls tied up out of the reach of the residents? Staff asleep on duty? Owners more bothered by staff nicking a slice of white bread than a distressed woman crying out for help for thirty minutes? Residents being washed in cold water … or not at all? Carers knowing absolutely nothing about the lives of those in their care? … and all this when they knew they were being filmed!

If I hadn’t sat there and watched it happening, I’d find it hard to credit. I can only devoutly hope that, as a result of this shocking exposé, things will change. They have to. Because one of the measures of a civilised society is the way in which it treats its most vulnerable citizens. How can we simply stand by, knowing this happens?

I was sent an email this week which resonated for me with the sobering reflections generated by the BBC 2 programmes:

A frail old man went to live with his son, daughter-in-law, and four-year-old grandson. The old man’s hands trembled, his eyesight was blurred, and his step faltered. The family ate together at the table. But the elderly grandfather’s shaky hands and
failing sight made eating difficult. Peas rolled off his spoon onto the floor.
When he grasped the glass, milk spilled on the tablecloth.
The son and daughter-in-law became irritated with the mess.

‘We must do something about father,’ said the son.
’I've had enough of his spilled milk, noisy eating, and food on the floor.’


So the husband and wife set a small table in the corner. There, Grandfather ate alone while the rest of the family enjoyed dinner.
Since Grandfather had broken a dish or two, his food was served in a wooden bowl.
When the family glanced in Grandfather’s direction, sometimes he had a tear in his eye as he sat alone.
Still, the only words the couple had for him were sharp admonitions when he dropped a fork or spilled food.
The four-year-old watched it all in silence.

One evening before dinner, the father noticed his son playing with wood scraps on the floor.
He asked the child sweetly, ‘What are you making?’ Just as sweetly, the boy responded,
’Oh, I am making a little bowl for you and Mummy to eat your food in when I grow up.’
The four-year-old smiled and went back to work.
The words so struck the parents that they were speechless. Then tears started to stream down their cheeks. Though no word was spoken, both knew what must be done …

The tale went on, but suffice to say, the moral of the story is familiar. As the Golden Rule has it: Do to others what you’d want for yourself. I guess we all need to take the lesson of the wooden bowl to ourselves. I know I do. Repeatedly. One day we too may have trembling hands and a deficient memory.

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.