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 …

And (with kind permission from parents) the principal characters: The Bag Lady …

… and the supporting cast: three Shadow People (street children) …

Inside 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, a happy ending …

… and a banquet.

All 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.

© Tony Marsh Photography

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

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!

© Tony Marsh Photography

Unfortunately 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.

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.

© 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!

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 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 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.