Doodle The Musical (Susan Elkin reviews)

I’ve been thinking about tablecloths. As you do on a dank, damp, dark January afternoon. Nowhere in any of the Alzheimer’s literature have I seen it mentioned but Ms Alzheimer’s has certainly hooked her claws into our napery.

Perhaps we’re old fashioned (OK – we are)  but we’ve always used a table cloth at every meal. Said item is then folded up and put away in nearby drawer in the dining room when not in use. The clean ones live in a different drawer.

In recent months I’ve noticed that My Loved One can no longer manage tablecloths. “Shall I lay the table?” he’ll say as he has done for 49 years when he can see dinner, lunch or whatever (I’m the family chef) is nearly ready. “Yes please” I reply and then, out of the corner of my eye, watch him confusedly trying to get the thing onto the table.

When we’re on our own we fold the cloth and cover half the (rectangular) table.  When anyone else is with us it goes over the whole table. The folding and the lining up – an oblong cloth which is larger than the table, I now realise, is a basic form of applied geometry. And geometrical concepts rely, at least partly, on spatial awareness – one of the things Ms A is attacking ruthlessly so that MLO can, for example, no longer drive or point towards Central London or Kent accurately. Who would have thought it would affect table laying as well?

In the dining room (contiguous with the kitchen in our house) it can take him as long as ten minutes flapping, laying, relaying and frustratedly trying it out in different ways to get the cloth neatly on the table. Often it’s all rumpled and lopsided even when he’s finished. And clearing away afterwards is worse because once the cloth is shaken he can never work out how to fold it.

In practice, of course, I try now not to let him do it at all because it is irritating and upsetting in equal parts for both of us. What usually happens is that – if, as I too often am, I’m in a cross-patch mood  – I snatch it from him and quickly do the laying or folding  with an impatient tut and toss of the head. If I manage to be kinder and gentler, I pop the cloth on before he appears or fold it up after a meal while he’s still drinking his coffee so that he doesn’t get the chance to fail.

The same thing happens, incidentally with sheets. The ones we use on our wonderful six foot bed are ten foot square. And – not having arms as long as Roger Hargreaves’s Mr Tickle – there is no way I can fold them on my own. MLO no longer understands how to help me without very detailed instructions along the lines of “Hold this corner in your left hand … lift your right hand to shake the creases out…fold towards me etc”. A year or two ago we would have done the job collaboratively, quickly and wordlessly, probably while chatting about something different.

I find it very interesting – when I can detach myself from the tragedy of it enough to make objective observations – to watch the concepts of space and geometry unravelling. His declining brain presumably now won’t allow him to visualise the shape and size of the table in relation to the cloth. And that’s a very obvious, minor, everyday thing so goodness knows what other more important faculties the same decline is affecting in a less evident way.

In very young children – our youngest granddaughter, Libby, who is 3, for example – you watch these concepts developing steadily and there was a lot of stuff about Piaget’s work on perceptions of volume when I trained as a teacher in the 1960s. Once Ms A moves into your life the process goes into reverse as you head back towards infancy. At present, if MLO and Libby try to set the table together, they’re about even in the tablecloth stakes.  But their brains are changing in opposite directions. Within weeks she’ll be streets ahead of him and saying knowingly “I’ll do it for you, Grandpa”.

2017 was quite a year and, for once, I don’t mean Brexit and Trump. My turn-of-the-year reflections are rooted closer to home. In April Ms Alzheimer’s moved in for good. Well I suppose she’d been here for a while actually, but it was on 29 April – Diagnosis Day – that we were told firmly, finally and unequivocally that My Loved One’s brain scan showed that he has Alzheimer’s. A stop-you-in-your-tracks game changer to put in mildly. Eight months on and we are, in a rackety, rickety kind of way learning to live with Ms A – as we must.

During the same period, we’ve done a lot of pretty radical work to the house we bought in autumn 2016 which has meant dozens of tradesman busily, but disruptively, working their magic on our premises and, every morning, a rather plaintive question from MLO “Is anyone coming today?”.

We also had a couple of pretty fabulous holidays – first in Malaysia where MLO really wasn’t well for much of the time and then in Corfu where he seemed much more “with it” and gave me hope that perhaps the medication really is having some effect.

Meanwhile – busy working arts/education journalist as I am –  I have seen 109 theatre shows and been to 25 classical music concerts, mostly to review. Recurrent tiredness means that MLO doesn’t come to quite as many of these with me as he once did but he’s been to a good few. All the Alzheimer’s advice tells you to do as many brain stimulating activities as you can and theatre is good for that. So is the Polygon in The Times which he does most days. He used to do the Code Word too but bloody Ms A seems to have destroyed that little pleasure.

Goodness knows there has been plenty of anger, sadness and frustration during the last twelve months but we also laugh which feels like the sun coming out and Ms A retreating temporarily into the shadows.

So that’s what we have to focus on as the new year gets underway – laughing and counting our blessings. After all, we have each other, two brilliant sons and their equally brilliant families and a nice home in a very convenient location as well as half a century of shared happy memories. Without those things dealing with Ms A would be an awful lot worse – and it is for many people.

And I’ve said before, people are very kind. For example, one night last week I overheard the lifelong friend, almost another sister, who stays with us twice a year,  gently helping MLO run his bath because he’d momentarily forgotten which tap was which and how the bath and shower taps relate to each other. Then there are people who leap to their feet on trains so that he can sit down or patiently assist him in shops when he takes an unconscionably long time to find his money and organise his purchases. There’s nothing like illness for bringing out the best in people and making you pause for a bit of blessing counting – especially as one year gives way to the next.

2017 was rich in Alzheimer’s cure/prevention stories too. Almost every day, for the last eight months during which I’ve been especially attuned, there’s some sort of medical research report which makes the national media. Most of them come down to eating whole foods and getting plenty of exercise because it seems to work for mice. And that’s pretty irritating because MLO has always lived like that. He and I were eating whole grains, pulses and nuts with lots of vegetables and fruit on a daily basis before most of the researchers were born.

Then, on New Year’s Day I read (in a small The Daily Telegraph side panel) about a University of Lancashire study. It found that a “triple receptor drug” created to treat type 2 diabetes helped – in more of those unfortunate mice at any rate –  to reduce memory loss and the hateful amyloid plaques which are what Ms A really is. The scientists who published their findings in the journal Brain Research argue that their “very promising outcomes” could bring new hope to thousands of Alzheimer’s sufferers.

I wonder …? Onwards and upwards into 2018.

Ms Alzheimer’s is an especially unwelcome presence at Christmas but our first festive season with her recognised in our midst has been and gone without too much angst. There was confusion about what day of the week it was and which day was actually Christmas Eve and Christmas Day but otherwise it went fairly smoothly largely because I was around all the time to troubleshoot.  And as Christmases go, it certainly had its moments.

The best one was at our younger son’s on Boxing Day. It’s a delight for both my loved one and me to have all four of our granddaughters (ranging in age from nineteen to two) in one room and given, geography, logistics, jobs and education it doesn’t happen too often. But there we all were ripping open presents, yelping in delight, chatting, catching up and eating too much in a homely Brighton sitting room.

Then the younger children, excited about a download of action songs someone had found for them, decided that they simply had to do the Hokey Cokey with their Dad. So he moved some chairs to create a tiny dance floor and I stood up to join them – unthinkingly assuming that My Loved One would remain paterfamilias on the sofa where he’d already sat most of the day opening his old codger’s presents such as a Down Your Way calendar and Very Warm Gloves.

But one of our quasi daughters-in-law and the elder granddaughters weren’t having that. Much more thoughtful than I, they helped him to his feet and held his hands in our little circle. So the Hokey Cokey turned into a whole gathering activity – amidst lots and lots of laughter because we must have looked awfully silly. And I had to throw myself into it with an undignified level of energy because I was so moved to see MLO opposite me, trying very hard, feeling loved and enjoying himself but looking an awful lot older and frailer than he did this time last year. Had I not forced myself to  concentrate hard on hopping about I would have broken down and howled.

As it was I’d selfishly spent most of the day rejoicing at being able to have proper, grown up conversations with people. I’m a lifelong professional communicator – first as a teacher and now as a writer. I find it almost intolerably frustrating when I can’t get though to people. And at the moment I seem to be failing to communicate with both MLO and the lovely friend who’s staying with us (hearing problems) about 75% of the time. Yes, I know I’m bad-tempered but I really do try hard to be patient and kind – and then hate myself for failing.

Our younger son thinks the Hokey Cokey should be a new Elkin family tradition and is already looking forward to a repeat run at his brother’s house next year. And I’m sure his daughters will be up for it.  As for me, I dare not think a whole year ahead and reflect on what the ever-present and increasing invasive Ms A will be allowing us to do by then.