Stick to lying about Diana, why don't you

Oh God.  The Daily Express seems to have taken up dementia as its latest hobby horse.  Which means that everything it reports will be wrong.  A month ago this most repulsive of all the British tabloids predicted an icy cold winter, which I found reassuring: I work on the principle that whatever the Express tells you, it's pretty safe to believe the exact opposite.  Europe.  Immigrants.  House prices.  Whatever. Take the Express as your misrule of thumb. 

Yesterday Jeremy Clarkson got himself into bother for saying that those who took part in the national strike against public sector pension cuts (myself included) should be taken out and shot: well, that's his shtick.  I'm not sure how seriously he always takes himself but he can be funny and knows how to wind people up, which is partly how he earns his millions (with no doubt an accountant helping him to avoid as much tax as possible).  I loathe everything he stands for, especially his "drive fast and screw the environment" attitude, but he doesn't offend me.  Who does offend me?  Express owner and pornographer in chief Richard Desmond, that's who.  Shooting's too good for him though.  Where's the Spanish Inquisition when you need them?

Today's front page headline is "SIMPLE WAY TO FIGHT OFF DEMENTIA".  Fight off.  That implies making it go away, n'est-ce pas?  The possibility of victory?  Well I know, professionally and personally, that there ain't no such way, so whatever the article might imply, the truth will be otherwise.

First paragraph: "Simple puzzles which stimulate the brain can halt the advance of dementia as effectively as some drugs, it has been revealed."  That "can" covers a multitude of caveats.  In some circumstances some patients, when given puzzles rather than drugs, show a slower rate of decline than patients given drugs alone.  Really.  On the other hand, in other circumstances, a different lot of patients on a different lot of drugs may well decline at the same rate whether they do crosswords or not.  Who knows?  This is one very small study we're being asked to look at here.

Lower down we read

"Dementia rates tend to be lower in people who are mentally active throughout life."

This is an assertion, with no evidence to back it up.  My own experience suggests that dementia is absolutely no respecter of high intelligence or mental vigour. 

"Results from researchers in Germany supported earlier work showing that people doing a crossword four days a week had a much lower risk of dementia than those who did one puzzle a week."

Again, really?  That isn't quite borne out by the detail which follows.  For a start, the research was carried out on people who already had a diagnosed dementia.  It's one thing to experiment with different care regimes, leading to the hardly novel conclusion that progress deeper into dementia can be slowed down by appropriate non-pharmaceutical interventions.  Now tell me something we don't know.  It's something else entirely, indeed flat wrong, to suggest that doing crosswords reduces the risk of getting dementia in the first place.  The underlying principle here is so trivial I hesitate to spell it out, but Express readers might not have grasped it yet: it is better for one's quality of life whether one is well, ill or even dying to be occupied rather than bored.

At least the Express  had the decency to go to the Alzheimer’s Research UK for a quote.  Unfortunately, its director of development, Dr Marie Janson, spoke in such terms as in effect to render the entire article worthless. 

“It’s believed that cognitive stimulation can be an effective method of helping people cope with the symptoms of mild to moderate dementia... if [the findings of this small study] can be replicated in large-scale studies, this could greatly improve the lives of people with dementia. It will also be important to see how long the benefits might last.

“While any advance that can help people cope with their symptoms is to be welcomed, we still lack a way to prevent dementia or stop it in its tracks"

In other words, the reported research is of some value in devising care regimes for people with dementia.   More work is needed to confirm even its modest conclusions.  It is absolutely NOT a "simple way to fight off" the condition.  The Express headline is a lie, offering false hopes to people who may be beginning to suspect that they or someone they love has been stricken with the condition.

This is just the latest in a string of misleading stories carried by this alleged newspaper.  On October 10, it led with

"A daily 10p vitamin pill could prevent millions of people being struck down by Alzheimer’s disease.  Research has found that vitamin B can help protect the brain from dementia."

Wrong.  There may be some connection, but more research is needed to get anywhere near verifying the Express' claim.

Back on June 30 it was cinammon. " Scientists are hailing an everyday cooking spice as a possible cure for Alzheimer’s – after finding clues in the Bible."

No they aren't.  The Alzheimer's Society said on this occasion "Although these results look promising in mice and fruit flies, it’s too soon to know what effect it would have in people."

And so on.  On planet Express the royal family conspired to have Diana murdered; the EU has banned children under 8 from blowing up balloons (no it hasn't, merely suggested they should be supervised: a bit "nanny state" maybe but hardly restrictive), and dementia is a preventable condition.  Lies, lies, lies.

Tell you what, all this tabloid tripe is making my blood boil, which could put me at risk of a stroke.  Conclusion: one good way to lower your chances of avoiding vascular dementia is not to read the tabloids.  Now that would be an interesting piece of research: which newspaper's readers are more likely to get Alzheimer's than any other?  I have read recently a paper by some expert from the University of Tottletosch in Transylvania proving conclusively that it's the Daily Express.

Talking to the invisible man

Dad sounded really unhappy tonight.  Confused as ever, still thinking he's going home any day, but complaining of feeling tired and not interested in music - are you registering this?  Not interested in music.  That's like the girls in the Daily Star not bothering to take their clothes off.

Perhaps it's the medication.  The ward seems to be concentrating on his hallucinations, so have prescribed him an anti-psychotic.  Fair enough, it's preferable for a man to be in touch with reality, but it seems there's a price: these drugs can lower the patient's mood.  And I'm asking: suppose he's happier talking to the invisible man, maybe imagining that the invisible man is talking back?  I'm not saying it's a lifestyle choice, like he's booked a holiday on some alternative planet, but have they thought that pychosis might be the brain's way of trying to cope with the dementia, as if when reality is too confusing, let's try something else?  Is it doing him any harm to be off the planet?

Maybe if it's also accounting for the withdrawal from the ward day-room and his lack of interest in things that would normally give him pleasure.  Personally I'm more bothered about his incontinence - or is that an aspect of the hallucinatory state as well?  More to read up on.  Must make sure I talk to an actual doctor now they've got the measure of him and are starting on the medical interventions.  The nurse who answered the phone earlier said "we can't give you too much personal information over the phone" like there was some doubt as to who I am.  "I'm not trying to be offensive", she said, sensing the irritation in my tone.  I told her I wasn't offended but on reflection, I was.  They'd tell me if I was there, I can give her information only a son would have, to prove my bona fides, what's her problem?  All right, it's my problem and it's the usual: three hours drive down the effing M1 coupled with, on this occasion, the fact I'm tied up this weekend and genuinely can't make the trip.

I don't mind being Dad being muddled but I expect the ward to keep him happy.  If that means letting him hang on to his psychosis, so be it.  Even in the real world we have the right to our delusions: that the UK needs nuclear weapons, that an angel showed Jospeph Smith some gold plates and helpd him translate them into the book of Mormon, that who footballers and film stars sleep with is of the slightest interest to the general public.  We don't medicate people who believe such twaddle, why pick on some harmless old man  just for talking to a someone who isn't there?  And even as I write those words I know I'm being unreasonable.  So?  This blog is at least partly about how I feel, dammit.  And people don't always feel reasonable.

Nov 18: Sondheim at the Town Hall

Val emailed me with an intriguing request: would I accompany her for some pre-concert entertainment at the Town Hall?  It would give us a chance to talk up our work with singing and dementia, have some fun and by the way there'd be a small fee.  Wild horses etc.

For me, she's the girl who leads community music-making, for which she chooses an appropriately populist repertoire; but her background is opera and tonight she went for the Marriage of Figaro, with some Mendelsohn to follow.  Well, it was a classical concert so she felt she needed to be in keeping: other community musicians invited to the same pitch have just done their usual stuff.  We dressed up for it, out came my dj and bow tie, Val had a posh frock on.  The atmosphere at the Town Hall bar was relaxed rather than rapt, people listening with one ear but chatting away too, which was the way we wanted it: if they had been concentrating too hard they would have spotted all my wrong notes - I play a lot of popular stuff myself, but the discipline required for accompanying classical singing is something I've let slip and the last couple of days have seen me practising frenetically so as not to let Val down.  In the event Val had a sort of flu-y bug and wasn't in terribly good voice, for which she beat herself up mercilessly.   She was going to kick off with Puccini then bottled it: reckoned the high notes would have defeated her.  I couldn't say she was brilliant because that wouldn't have fooled her, but by the standards that I sensed the concert-goers might have expected she was still pretty damn good, and I did my best to reassure her.  They weren't paying to hear us so they should have been grateful, and many of them were. Apparently Val has a number of highly critical (and I suspect highly jealous) sisters who were always putting her down and she's internalised their jibes. 

She gave me the chance to do a solo, and guess what: I went for Sondheim, the song I quoted back in February.  No way could I do justice to that lyric and play the tricksy accompaniment at the same time (especially as I don't have proper piano reduction), so I scored it in midi, saved it to memory stick and plugged it into the back of the keyboard.  Used a few other voices besides piano - vibes, strings, bit of synth: I'm familiar with the relevant software but was still surprised how quickly I got it finished.  Now, I don't have Val's quality of voice  but I can project a song OK and I got some applause that was a touch more than polite, and at least one little cheer.   I was on cloud eight, with nine to follow.

In the interval Val was back in popular mode and I was vamping underneath her, occasionally soloing to give her voice a break and make sure we didn't dominate proceedings.  Gershwin's Summertime, A Nightingale Sang in Berkeley Square, Blue Moon.  We were more relaxed now (that glass of wine helped).  Val started to work the nearby tables, I was your lounge  cabaret piano man and - bear in mind this was partly an awareness raiser for dementia - thinking of my dad who, fine organist though he was in his day, loved accompanying more than any other kind of music-making.  Tonight I understood why.  I'd had my moment of glory with the Sondheim, but the deeper pleasure lay in enabling a far better singer than I'll ever be to do her stuff, and wondering if Dad would have been proud of me.   He would have played the Mozart properly, but he was never an improviser and so I guess he might.  And that, folks, really IS as good as it gets.

As we went home Val was talking about doing it again some time.  We might be starting our own double act. I wonder if she'd sing "The Little Things You Do Together" with me?  or maybe even "Remember", from A Little Night Music - appropriate if a tad suggestive.  Two great Sondheim duets.  Joy of joys would be for me to accompany her in "The Miller's Son", also from Night Music, but it's a bit steamy and I don't know whether she's quite up to playing the trollop.  What an astonishing song though: and in a way even appropriate, because it's about seizing the moment - you never know how short it might be.  We live, according to the lyric, in the "meanwhile".  Pwd's have no option, time is a complete muddle to them.  Well, you can dream: and dreaming is what I should be doing right now, instead of writing this blog at some unearthly hour but this is fresh and I'm still high after the concert.

Off to see Dad tomorrow.  That will bring me down to earth.

Remembrance Sunday 2011

Leading the remembrance ceremony at Coxhoe: I was the community parson for half an hour, since the parish church is currently waiting for a new vicar and the Catholic priest had to be elsewhere.  I don’t mind doing the formal thing: I can deliver a text professionally enough and know how to use a mike.  I just struggled internally with certain things the text was saying: greater love hath no man than this, that a man should lay down his life for his friends, is categorically not about war.  I find such abuse of scripture deeply offensive, and I don’t take offence easily.  One could see how it might have resonated in 1919 or whenever the liturgy was drawn up: men in the Great War really did imagine themselves to be making sacrifices to prevent the invasion of their homeland by the ghastly Hun.  By 1939 we had, surely, become more realistic about what war means: it’s a filthy, disgusting, destructive business to which no honour, no glamour should be attached. 

That is not a pacifist statement: I cannot affirm that fighting a war is in all imaginable circumstances preferable to not fighting one, and from that it follows that I support in principle the existence of armed forces.  In practice I think everything to do with them stinks: they guzzle up human and material resources, show off in their planes by flying low over the countryside and frightening the cows into miscarriages, mis-manage their budgets something atrocious and are never held to account… and then they expect us to admire them, defer to them, address their commanders by their rank like it confers some kind of virtue on them.  Sorry, Colonel, you’re just a posher-talking variety of killer.  Of course, Hitler had to be defeated.  Which raises many questions about how he might have been stopped before 1939, but come that year few denied that war was the only way.  That doesn’t justify all the tactics we then used, in particular the fire-bombing of German cities in revenge for the Blitz.  Those bombers were taking risks, of course, but they weren’t laying down their lives for anyone: they were trying to take as many lives as they could, without surrendering their own.  That’s sheer wickedness and the brave people I honour are those who not only saw this at the time but dared to speak their minds.

The question that demands attention through all this is: who decides what should be remembered and controls how we should do our remembering?  I don’t actually object to Remembrance Sunday as such, and find it intriguing that many people much younger than me see it as a meaningful day: clearly not because they grew up under the shadow of WWII.  There were Brownies and children from the primary school laying their wreaths at the Coxhoe war memorial.  I hope they come to reflect on the stupidity of war and pledge to make a better job of running the world than their parents’ generation did.  But I do object to the assumption that we have to use the same sort of language now that was appropriate in 1919 and maybe 1946, when the sheer relief of a by no means certain victory and the trauma of so much loss and hardship entitled people to take a few liberties with language and even maybe to bend Holy Scripture to their purposes of mourning and finding comfort and meaning in the midst of the destruction.  We should know better now.

Dad never made a big deal of Remembrance Sunday, I guess because he had memories he wanted to well and truly bury rather than summon to consciousness.  He wore his poppy but didn’t attend any do’s at the local cenotaph that I can recall.  Good old Dennis.  No-one was going to tell him how to do his remembering.

He’d been called up in 1942, when he was 18.  The following year they sent him to Burma and it was a grim time.  However his most remarkable story is of a freaky escape (and I am studiously avoiding the word “miraculous” here) on Christmas Day 1944, when his entire regiment walked into a Japanese ambush and were, let’s say, Daleked.    (In the hackneyed mythology of war that I grew up with, the Japanese were more like soulless killing machines than other human beings who just happened to be fighting on the opposite site.)  I’m told the incident gets a mention in the footnotes of the history books of the war in the Far East, but I’ve never looked it up.  Anyway Dad missed all the Christmas carnage: he’d contracted something like dysentery and had flown back to India to recuperate; but for that illness he’d have been one more for the Japs to exterminate and I wouldn’t be here.  Other than that, and some strained admissions that he’d done a spot of exterminating of his own, he never talked about the Burma years.  After VJ day he was transferred to India to, what, help maintain law and order during the time to transition to independence? Splendid job we made of that then, but anyway, those were exciting years for my dad and he’s talked about them increasingly since Mum died in 2003.

But then there was the curious incident of the Second Photograph Album.  Dad, I have to say, was never particularly good at or interested in photography, but he had cameras and took snaps as many do.  Gave it up long before increased affluence allowed him and Mum to travel abroad, on trips where he would have seen many sights worth shooting: the prospect of being camera-less in the Alps would mortify me, but not my Dad.  Anyway, the regular family album, with its collection of wedding photos, followed by a sequence of me as a baby/toddler/precocious little horror was brought out regularly.  But on the same high wardrobe shelf, out of my reach, there lived another album which was never produced.  One day I was in my parents’ bedroom, and noticed that it had gone.  Later I would learn that it was Dad’s collection from the war years, and he and Mum had come to an arrangement: once I was old enough to ask what was in it, out it went.  Apparently I had asked, though I can’t remember.  Oh for heaven’s sake – why couldn’t he have stashed those photos in the roof or somewhere I’d never go?  It would be absolutely fascinating to see them now, but here I think is the truth: he wanted a pretext to destroy those memories, and my curiosity would serve the purpose.

They shall not grow old as we that are left grow old, the lucky bastards.  At the going down of the sun and in the morning, we will carry on with our lives as though that blithering war never happened.  There are memories we keep; there are memories we deliberately suppress; there are memories we lose; and now, for Dennis, there are memories that he can’t remember he ever had.

Awareness Weeks

Rabbit, Parkinsons, Dyslexia, Deaf, Brain, Business Continuity, Mental Illness, Salt, MS, Eating Disorder, Asexual, and Alcohol are, believe or not,the first dozen hits resulting from a Google search on * Awareness Week.  Who would have thought it?  Alcohol one might have predicted, cancer certainly (though why male rather than cancer in general?  one might have thought Breast would be more prominent, if that's the word...) and maybe even Parkinsons.  I'm glad that Mental Illness makes the top ten.  But Rabbit Awareness Week as the no.1?  Someone has been manipulating Google to produce that outcome, surely. 

Further down the list - I am not making this up - are awareness weeks for Ragwort, Compost, Groundwater, Capitalism, Orangutan, Encephalitis, Sea Otter, and Zombie (which isn't a joke, it refers to a particular form of cyber-crime, of which I wasn't previously, er, aware.)

Perhaps there should be an "Awareness Week Fatigue" awareness week.  Dementia has a lot of competition.

It doesn't figure in the early hits, although if you're in the trade, so to speak, our Awareness Week, in July, feels like quite a big deal.  Certainly I was heavily involved in Fantastic Fred's planning team, and recruited my sister in law to produce the publicity for us.  We had a full programme of events, an information stall, a showing of "Iris", a specially commissioned piece of drama, a recreation of "Partial Recall"  at the carers' information centre .... my own contribution was to organise a special singing session involving children from a primary school next to the day centre where I regularly do my thing.

I daresay we raised some awareness, how much is hard to quantify.  The Week had a very different feel to me now that dementia is something that involves me personally.  Some of the comments we picked up reminded me, which must be obvious to anyone who doesn't live and breathe the subject, of the extent of the stigma that still attaches to it.  The condition is still seen by many as something shameful, a stain on the family to which the sufferer belongs, much in the way that cancer used to be.  If we are now able to talk more freely about cancer, saying "tumour" when we mean tumour, rather than "growth" or "lump", that's all to the good but maybe reflects the advances in medicine whereby cancer is no longer an automatic death sentence.  People survive it as they never used to; with some forms they are even likely to survive it.   But no-one recovers from dementia.  It's an early warning of the inevitable and what's more it robs victims of their dignity and ability to fight it.   You can hardly blame people for taking the "ignorance is bliss" attitude.

I was also reminded of the difference between savoir and connaitre.  I prepared a rolling Powerpoint to run in the background at the carers' centre.  I researched it thoroughly and it has been widely appreciated, so I "know" my stuff.  A year ago, however, I knew it only in the savoir sense: I was well informed.  This year it was connaitre, I know it through having encountered it personally as a carer, and my own slides hit me with a poignancy they did not have before even though they convery the same information. I look at them now and think: that's my dad they're talking about.  Real connaitre would be knowing that you have the condition yourself, but here's the perpetual irony: the more you have it, the less you know you do.

Dementia and ID

ID standing not for identity but Intelligent Design.  In its more developed form, the theory is largely confined to fundamentalist USA and argues that the complexity of some organisms is such that they could not possibly have evolved as Darwinism proposes but rather provides evidence for the intervention of a Creator.  This Being is never specifically identified as the Christian God, but it is striking how many ID enthusiasts turn out to be Christians of a particular persuasion.  Their ideas are often seen, I think rightly, as a Trojan horse for full-blown creationism in all its majestic craziness, and while I'm pretty knowledgeable on that subject it's not what I'm discussing here.  Suffice to say it's balls, and while ID may appear to be on to something it too has been thoroughly discredited other than among those with an ideological and/or theological axe to grind.

I'm more concerned with the kind of "soft" intelligent design theology that IS widely held in this country, even at a superstitious level among many whose Christianity is of pretty sketchy kind.  It goes: if there's a God, he must have a plan for people's lives.  Things happen for a reason, because they are His will, or don't happen because they're not.  There's a purpose in everything, an overall design. 

"With God things don't just happen, everything by him is planned", goes one popular song; and "every fox and every hare/Must fit in a special place somewhere" burbles another.  The second is for kids, maybe they both are, but that's no excuse.  I don't know whether to be sad or angry at the level of deception, maybe self-deception, on display here.

God or no god, the world is a random place.  Randomness is part of how we got here, as both Darwinism and, in a different way, quantum mechanics combine to tell us.  Shit happens for a reason in the sense that events have causes - those two lumps of metal got seriously mangled because they were travelling towards each other at a combined speed of 150 mph - but not for any purpose (God clearly meant to kill the passengers in those cars, with the exception of one who suffered brain damage and will never speak another coherent word again?  Bollocks).   Some people miraculously survive earthquakes, right.  Many other people miraculously don't.  There is no helpful answer to the question "why should my child get cancer", only the distinctly unhelpful "because there's a one in 100,000 chance that any given child will and yours won the devil's jackpot".  Only the devil has nothing to do with it either.  Nor does the so-called "Fall", which creationists insist on as the moment when sin, suffering and death entered the world for the first time.  As God's punishment for a single act of curiosity - hey darling, wonder what that apple tastes like - when He himself set up the temptation and issued the prohibition in full knowledge that Adam and Eve would break it?  Oh come on.  As I am forever telling people, Genesis 3 is about the dawning of human consciousness.  Until that apple gets eaten, the divine plan is stuck in neutral.  It has to be eaten, God makes sure it gets eaten by putting it within easy reach, drawing attention to it and even supplying a talking snake to persuade the all-too-innocent couple.  And who, pray, endowed this snake with the gift of language in the first place, if not the Almighty himself? 

I digress, but my point is clear. Among the shit that happens is dementia.  Not all old people get it, some quite young people do, and it affects every sufferer in a different way.  No God worthy of human worship could plan such indignities; a devil might, but Christianity declares that the devil has been bound, however one may interpret that metaphor.  Dementia is part of  is part of the price we pay for having learned how to extend our life expectancy.  Why it exists at all is part of the larger problem - why pain, why disease, why the associated degradation?  Can theology make sense of this?  I think it can, but not in terms of a God who actively wills these things as some kind of revenge on us for doing our own thing (otherwise known as sinning).

An Intelligent Designer, to finish where we began, would surely have come up with a dementia-proof brain.

The day they sectioned him

Nov 10: a day to remember.  Or maybe to forget; but then it began with Dad completely and quite uncharacteristically forgetting himself and causing an incident.  Which he now professes that he can’t remember.

It goes like this: around 9 o’clock Dad’s keyholder tries to ring me only I’m driving so I can’t take the call.  When I’ve arrived and before I can respond, the care agency rings  - at a time when I know it means there’s a problem; usually that he won’t let the carer over the threshold.   This time I’m told that he has wandered across the road in his underwear, the keyholder has seen him and tried to encourage him back home – whereupon Dad makes some kind of sexual advance to her.   The lady is duly perturbed, makes him return, and then rings someone for help, I think a lady from church who also knows Dad.  The care agency is on the case and so is the CPN, as you’d expect, but then it’s what they get paid for.  That two ladies from church agree at no notice to sit with him for a couple of hours to make sure he doesn’t do any more stupid things is a classic instance of Christians going the extra mile.  Meanwhile I’m at work trying to organise a bit of live music, partly in order to publicise the work I do with singing and dementia.   Later I will need to drive to the coast for a conference; fortunately and most unusually I have a passenger with me who not only can take calls on my mobile while I’m at the wheel, she is a former CPN herself and can comment knowledgeable on the situation down in Grottsville as it develops.  Both the care agency and Dad’s CPN ring en route and my passenger’s expertise proves is invaluable.

Knowing that she’s an unbeliever, for want of a better word, I tell her she’s just had proof that there is a God.  On the one day I really need a passenger to take my calls, otherwise I’d have to stop and make myself late, he not only provides me with one but a passenger with exactly right credentials.  Aware that I’m winding her up, she follows the logic through.   If God so engineered matters that I find myself driving a passenger just when I need one, am I also implying that he fixed it for my Dad to make a pass at his neighbour?  Fifteen all.  But as I then remark, Christians think like this all the time.  On those good days, when everything surprisingly works out, all the lights are at green, you get the last parking space and you bump into an old friend you haven’t met in years who gives you a vital piece of information that un-snarls a situation that’s been snarled up since forever, well there’s Providence aka God doing its thing, shaping your end.   They call it "God-incidences", a coinage that makes my toes curl.

So what of those other days when you get stuck in road works and turn up late for a meeting where you’re giving a presentation, only your laptop won’t talk to the projector, then your wife rings to say the cat’s been run over – what was Providence doing then – sleeping on the job?  Trying to teach you a lesson?  Punishing you for going on that porn site the night before?  Suppose you’d been on the porn site the night before that other really good day as well – it doesn’t work, doesn’t it?  The example I give my passenger is more succinct than this of course, I’ve got some thinking time right now.  The substantial point is that Christians talk glibly about God being at work in positive situations and ignore the fact that many situations are basically shit.

It occurs to me that I am now the son of a dirty old man.  Let’s hope it’s not hereditary, says the famous Eccles when I convey this thought to him

Underneath the levity I am worried not that the mental health team will section my dad but in case they don’t.  My passenger, who has been in such situations many times, assures me that they are following procedure but that there can be only one outcome.  Dad clearly cannot be trusted in public and in that sense is not safe; I want him on a ward where they’ll look after him but also watch his every move, and find out why his condition has worsened so quickly in the last few weeks.  The phone eventually rings again at around seven, with a young psychiatrist clearly relieved at not having to explain to me what a section is or persuade me that it’s my dad’s best interests.  He wants me to persuade him to go voluntarily, and I promise to try.  Otherwise they’ll have to use strong-arm tactics, which will be traumatic for him and another potential risk.

In the conversation that follows Dad is still worrying about the huge sums of money that are owing to him and which people won’t hand over.  I try to make him remember what’s really happened earlier but it’s clear that he can’t or won’t.  He knows he’s been across the road to the neighbour’s but not that he wasn’t dressed properly or that he’d made an improper suggestion.  Well, he’s a gentleman, and no gentleman would behave in that way, therefore the incident never happened, so of course he can’t remember it.   He’s handed reality back to the shop and demanded a refund.  He puts up the “just a minute, just a minute” barrier again to assert his control over the situation, but it’s surprisingly fragile and after I’ve stood up to him a couple of times his defences suddenly crumble and he agrees grumpily to go to hospital – for reasons that make no more sense than his earlier defiance, but at least I have a result.  I end the call, ring the psychiatrist’s mobile, and Dad is whisked off compliantly in an ambulance while he can still remember that he’s promised me he would go.

In consequence, he goes to hospital in the clothes he has on and with nothing else.  I will have the task of packing a case for him before I go to visit him the following day.

At home I find a dozen instances of what happens when Dad resists the carers coming in and tries to manage by himself; he doesn’t.  For example: a tub of whipping cream, bought two shopping trips ago and ten days past its sell-by.  It’s been in the fridge all that time but tastes disgusting and has to be chucked out.  For that matter, two pints of milk which aren’t up to their sell-by have gone off as well, presumably because they spent a good deal of time NOT in the fridge.

He’s been particularly naughty about washing, which Zoe is supposed to do for him only he now reckons he’s “sacked her” for skimping on her hours.  So we’ve got a pile of washing on an armchair waiting to be ironed; a load in the machine, which has been stuffed so full it can’t have been washed properly; and a plastic bag full of dirty washing, some of it very pongy, in a wardrobe where carers wouldn’t necessarily think to look.  That’s not to mention the mucky pants just strewn on the floor and another pair soaking  in the bathroom washbasin which suggest he might have been taken short.  I don’t have time to deal with this, Zoe will need to pay another visit.

The longer you live, the greater the risk

I was detailed by the boss to attend the Trust's AGM.  He in turn had been told to provide a stall publicising the activities of our chaplaincy team, but left himself no time to prepare the accompanying display materials, so that one fell to me at short notice.  I'm not complaining about that, it was challenge to meet against a deadline, the sort of thing that sets my creative juices running, and I didn't let the side down.

It was an experience to gather in a large function room at the local football stadium, a relatively new and impressive structure that dominates its surroundings, a former dockland area.  I don't really do football and have never before stepped into one of its shrines.  I use the word advisedly. It felt like entering a sacred space, confronted by relics, icons of the the game's heroes, the grandeur of the layout instilling awe and signalling how much this activity signifies to its devotees.   The club is their religion, the players their saints; which I suppose is why their personal lives and moral standards off the pitch are assumed to matter.  To me it was all as bewildering as it would be for a cradle atheist to visit Durham Cathedral and be unable to fathom why people lavished so much effort on giving glory to an imaginary being.  

The main presentation, before the unavoidable financial statement and Chief Exec's address, was on the subject of dementia, more particularly on reducing one's chances of getting it.  There was more than a whiff of denialism in this, for despite occasional spasms of excitement in the rubbish press, all experts know that Alzheimer's in particular strikes at random and we have NO idea how to prevent it as yet.  The same is not quite true of vascular dementia, which is associated with strokes and there are certainly ways to lengthen the odds against that affliction.  Even then it's a lottery: if there was ever a person who did everything right in terms of stroke prevention it was my mum, and she had a couple that blighted that last three years of her life.  I don't always feel that the medical profession has accepted the 100% death rate among human beings, but harbours the sneaking suspicion that if a person ate all the right foods, took exactly the right amount of exercise, quit smoking and didn't mess with drugs, they would outlive Methusaleh.

Even if there is some evidence that certain lifestyle choices do reduce the risk of dementia, those same choices also tend to add to life expectancy; and here's the irony.  Look after yourself and you'll live longer, but the longer you live, the more likely you are to contract dementia.  My wife's parents died relatively young, which was of course regrettable and maybe connected with their high-fat diet; but when she looks at what my dad is going through, and what I'm going through on his behalf, she's half glad of what she was spared.

They lethally inject cats, don't they?

Custard finally conked out.  I was hoping she'd sleep herself into oblivion, and for a while it certainly looked that way.  She stopped eating and slipped into a coma; it was surely only a matter of time.  Then she roused and started to make incoherent noises, so we took her off to the vet.  He confirmed that she was dying, but said that if we left her to it she'd do so in distress and of course we weren't having that.  So out came the big needle and for the first time in our lives we had to watch an animal being put down.

We said our goodbyes, told her how we'd loved her, like she'd understand (we're entitled to our little fantasies, aren't we?)  Anyway, you have to say these things "for the record", so that you can remember yourself as having said them.  She's been a member of the family for 11 years and you honour that, you pay some kind of tribute, without forgetting that she was after all a cat.  Not "only" or "just" a cat, that demeans her; but not an honorary human being either.  In thinking about animal ethics you have to steer between the Scylla of sentimentality and the Charybdis of heartless pragmatism, seeing other creatures as nothing more than means to our ends.

Custard wailed as the steel pierced her skinny old body and within a minute or less had stopped breathing.  I have to say that the vet's basket-side manner was brilliant, he could teach some consultants of my acquaintance a things or two.  Later that evening I buried her close to the spot in the garden where latterly she had taken to sunbathing and watching a very blurred and confusing version of the world go by in between periods of sleep too heavy to qualify as cat-naps.

Any decent cat owner would have done the same, which is of little comfort; the house is now pervaded by huge absence where Custard used to eat and groom herself and snuggle into her basket, a cold chill on our laps.  But all life comes up against its necessary end, I don't think she'll be coming back to haunt us.  It feels like an obvious remark that we don't know how to deal humanely with human beings at the end of their days for whom all quality of life has gone, but I resist owning it because I know it's more complicated than that. 

I am now at the point where, with my Dad some way from his necessary end, I am watching his experience of life become more impoverished by the week, as if he's being dragged up a mountainside to where the air is thin and the only view is of clouds.  Sooner perhaps rather than later he will be aware of little but effort and bewilderment.  Maybe, as now, he won't be in pain, but there will be no content to his days.  But you can't just reach for the hypodermic, even if every compassionate fibre of your being is tingling with the conviction that all he now wants is to be with his beloved Margie.  He's not a cat.  And you never know whether your own frustration at having to care for someone who is past being able to respond colours your judgement as to what is and what is not a "best interest" decision.

After a long break: explaining the next sequence of posts

I write this blog in the full knowledge that it's rarely accessed right now other than by me.  One or two friends know about it but I've done nothing to draw the world's attention to it; that may change.  I may eventually draw the material into some sort of book or at least presentation when the saga is over, whenever however it may end.  For now, it's just here for me; but in case anyone does stumble across it, or to those I ask to visit the site, I need to say this.

I went on holiday in June, after which life became interestingly hectic on several fronts and I stopped blogging.  I just couldn't make the time.  Meanwhile a great deal of relevant stuff has happened, especially with regard to my dad's situation, and I'm already reading earlier posts with a kind of disbelief that he functioned as well as he did so recently.  It's different now, as you'll see, and I need - to repeat, mostly for myself at this stage - to bring the story up to date (and by the time I've done that it will have moved on some more, I've no doubt).

The posts that I'm - hopefully - going to start publishing may or may not be in chronological sequence for a while; they will draw on correspondence and conversations that may go back several months; I may need to interrupt the flow as the situation develops.  There is a story I need to tell; I can't promise that the chapters will follow in logical order, in fact I can virtually guarantee that they won't.   Sorry about that!

Of all the people to find God - and why now?

Like a lot of liberal Christians, I'm highly tickled by Douglas Adams and Terry Pratchett and their ilk, writers who can never leave off having a go at religion.  Their neat cynicism is such a refreshing change from the pious and usually ignorant waffle that gets disgorged from your average pulpit on a Sunday - though not when I'm in it of course :)  Adams, to whom I came first, always struck me as more of an agnostic than he cared to admit or perhaps was even aware.  Self-professed atheist he might be, but if there was nothing in this God stuff why couldn't he leave it alone?  Religious speculation punctuates the Hitchhiker books; the first Dirk Gently story surely exposes Adams' own anxieties about the afterlife or absence thereof through the Gordon Way character who is  killed but doesn't know what to do next, while in the inferior sequel Norse gods are central to the plot.

I suspect that history will pronounce Pratchett's literary achievement to be greater than Adams' as it manifestly is in terms of bulk: the Discworld man has continued to publish his chronicles of Discworld at reliably regular intervals, never hindered by the writer's block that plagued Adams.  Nonetheless it was Adams who blazed the trail, creating a market for comic, philosophically adult, fantasy fiction; and Pratchett, like his forerunner, also delighted in mocking religion while at the same time drawing heavily on it for themes and character traits.

 

One assumed that Pratchett would take his scepticism with him to the grave.  Not so.

There is a rumour going around that I have found God. I think this is unlikely because I have enough difficulty finding my keys, and there is empirical evidence that they exist.

More, Terry, more: that's the authentic voice of contemporary scepticism, and your books are full of it.  However, the article (published by the Daily Mail in June 2008) continues more earnestly.

But it is true that in an interview I gave recently I did describe a sudden, distinct feeling I had one hectic day that everything I was doing was right and things were happening as they should.

It seemed like the memory of a voice and it came wrapped in its own brief little bubble of tranquillity. I'm not used to this.

He goes on to describe what is technically known as the oceanic experience (I've had one, they are sublime and unforgettable, no more mockable than Mozart or Leonardo: they feel like brief intimations of that utter, transcendent perfection otherwise known as heaven)

what shall I make of the voice that spoke to me recently as I was scuttling around getting ready for yet another spell on a chat-show sofa?

More accurately, it was a memory of a voice in my head, and it told me that everything was OK and things were happening as they should. For a moment, the world had felt at peace. Where did it come from?

Me, actually - the part of all of us that, in my case, caused me to stand in awe the first time I heard Thomas Tallis's Spem In Alium, and the elation I felt on a walk one day last February, when the light of the setting sun turned a ploughed field into shocking pink; I believe it's what Abraham felt on the mountain and Einstein did when it turned out that E=mc2.

It's that moment, that brief epiphany when the universe opens up and shows us something, and in that instant we get just a sense of an order greater than Heaven and, as yet at least, beyond the grasp of Stephen Hawking. It doesn't require worship, but, I think, rewards intelligence, observation and enquiring minds.

I don't think I've found God, but I may have seen where gods come from.

If you don't find that moving you are reading the wrong blog.  I'd want to discuss that penultimate sentence with Pratchett: the oceanic experience doesn't "require" formal worship - my own was certainly not Christocentric in content, more pagan in the strict sense (but then I love the natural world) - but it may draw worship from you, you want to mark your thankfulness for the occurrence.  And what it "rewards" is not so much intelligence as openness to possibility.  But my graver concern is that while he's been playing with religious questions all his life, he only gets a religious experience after he's been diagnosed with Alzheimer's: and of course any form of dementia, even in its mildest stages, can alter perception.  The possibility that it's some kind of psychic abberration has to be registered.

The sceptic in me wonders if the oceanic experience is not some kind of release mechanism, universal in humans, the brain's way of coping with certain varieties of stress.  Being told that you have dementia might be overwhelming but Pratchett, with more books yet to write, needs the sense that "all will be well" in order not to give up - so his brain generates it for him. I'm seeing a parallel with the way in which, when you're faced with a situation that calls for extreme bravery, the body floods with adrenalin of which one consequence is that you don't back off just because something you are doing (e.g. rescuing someone from a fire) is causing you great pain and distress.  You don't feel it until the danger has passed, then it hurts.  Hey, I've got a degenerative condition, I'm losing my mind here, I'm going to die.  Cue reassuring experience from brain - don't worry, it will be fine in the end.  So I can still function, for a while.

It's odd that I, an ordained Christian minister, find myself challenging a sceptic's apparent "conversion" on the grounds it may have a purely psychological basis.  What I'm not challenging is Pratchett's reference to  "an order greater than Heaven and, as yet at least, beyond the grasp of Stephen Hawking."  That there is such an order gets close to one of the central convictions in my faith; which I would lose if Stephen Hawking, or whoever, convinced me that they had grasped it.

I'm not holding my breath.   Hawking is a genius, but then so was Newton, who could write with honest humility:

I was like a boy playing on the sea-shore, and diverting myself now and then finding a smoother pebble or a prettier shell than ordinary, whilst the great ocean of truth lay all undiscovered before me

Pratchett would get that.  I'm not sure that Hawking does.

Chucking the carers out

Dad's getting paranoid.  The beefed up care plan was agreed, but of course he's forgotten that.   So now he has extra people coming to see him and he doesn't know who they are.  Nice people, trained in caring, able to win the trust of older people, that's hopefully why they're in this line of work... it couldn't be that it was this or bust, turn this one down and we stop your benefits, sunshine, could it?

Well, in the case of Edgar, you have to wonder.  I thought at first it was a shrewd move on the part of the agency to involve an older man in the care team, someone closer to Dad in both age and gender who would find it easy to establish rapport.  But what gave Edgar an advantage through being male and old, he forfeited by being, it would seem, unsuited for his job.  He sounds, piecing together the accounts of both the cleaner and neighbour, like a grumpy old beggar with no real empathy and lacking basic people skills... even known to eff and blind in Dad's hearing.  I can cope with fruity language, have been known to use it myself, anything but conform to the stereotype of the pious vicar whose eyebrows twitch at the slightest deviation from BBC newsreader English, but Dad wouldn't like it - he's more pious in that regard than me.  Or just more conventional.  Anyway, for whatever reason, Dad has now taken against Edgar and won't let him in the house.  From what I hear, I'm not sure I'd want Edgar in mine.

But think of the double precedent that sets.  First, Dad has formed a dislike of a male person with responsibility for his care.  So, males responsible for his care are people he can permit himself to dislike; but given his mental infirmity, that begins to colour his perception and memories of other male care figures who have been kind to him, with whom he has got on well.  He now recalls them through the lens of his encounters with Edgar: "oh I didn't like that doctor very much" he has said of one particular consultant.  Bollocks, Dad (he wouldn't use that word either): you got on with him fine, but you're hearing "male doctor" and remembering Edgar.

Second, if it's OK to chuck male carers out of the house, who's to say it's not OK to chuck out female ones?  and that's started to happen, as of today (October 25)  He's refused entry to lovely little Yvonne, had her in tears even.  Why?  Well, because Yvonne had said that she was coming instead of Zoe, had taken over from her and he wasn't having that.  It wasn't true, of course but Dad is - as I'm sure I shall keep saying - making up reality as he goes along.  What's become different quite recently is that it's a reality that makes him wary and suspicious, drawing on a side of his character that's always been on the lookout for con artists and cowboys.  He's not in a good place right now.

Dad has needs he's not aware of.  He doesn't wash properly, gets his clean and mucky clothes mixed up, isn't eating anything like a balanced diet ... he has his pride and won't be told, which is understandable, but even if he admits his carers it's not going to do much good if he won't let them do any caring.  I'm glad that daily contact is being made, but the plan needs to have a bit more oomph if it's going to work.

Absolutes at the end of life [1]

"Thou shalt not kill, but.needst not strive/Officiously to keep alive."  Arthur Hugh Clough, one of the great Victorian agnostics.

I am wary of absolutism in morals.  I prefer to say that there is a presumption in favour of something (telling the truth, being kind) or against it (theft, jealousy) rather than: you must always or you must never.  In general one doesn't hold with killing; anyone who takes a life has a case to answer, in the way that the preserver of life does not.  Absolute pacifists excepted, we allow for the exception of killing in war, which is fine.  Brave.  Heroic. Yeah, right.  Don't get me started: I'm not a pacifist, I just think war is a totally disgusting activity.

Where were we?  Oh yes, absolute moral imperatives.  Clough is right: there is none which requires us to preserve life at all costs.  Compassion may require us to end the life of another, as humanely as we can.  Religious conservatives dissent, of course.

At the Hillsborough disaster on 15 April 1989, 95 football fans were killed, either on the day or not long afterward.  A 96th fan, Tony Bland, survived.... except he didn't.  He entered a "persistent vegatative state" from within which no-one could communicate with him or he with anyone else.  All his biological functions had to be attended to by medical staff, apart from breathing, which he could still do without machine support.  Which meant he had to be kept alive.

If you can call it living.  But there was nothing to distinguish between this "living" and the mere existence of the bed in the ward he on lay for four years.  He wouldn't be waking up.  He might as well have died at Hillsborough, as his parents would have preferred.  Common sense suggested that Tony should be put to sleep for good, but under English law the administering of a lethal injection would have counted as murder.  Eventually the law was made to see sense, and gave permission for Tony's nutrition to be withdrawn, so that he would in effect starve to death. 

The case made legal history and is worth looking up.  What you may not discover is the reaction of the "Sanctity of Life" brigade, who had kept pretty quiet while the legal battle was raging.  That's quiet as in offering no pastoral support to Tony's parents and his consultant, all of whom as it happened were Christians and could share their agonising as brothers and sister in the Lord, so to speak, as well as within the formal relationship of doctor and carers.  Mr & Mrs Bland, we learned, felt that God's will was for Tony's vegetative state to be ended.  They'd prayed this through, they felt at peace with that conclusion.  But as soon as the decision to withdraw treatment from Tony was announced, then the right-to-lifers crawled out of the woodwork, standing in sanctimonious protest with their placards on the entrance drive to Airedale Hospital near Keighley, where Tony was (it was also my local hospital at the time, which is how I know this detail.)

The moralisers' action served only to distress the Blands, challenge the integrity of a highly regarded consultant while failing to serve Tony's interests.  It trumpeted their own self-righteousness, insensitivity and ignorance.

The rest of us were provoked by the Tony Bland case into reflecting both on what this thing called "life" is that is supposed to have sanctity, and on the difficulty of framing laws that may allow us to hasten death when to preserve life benefits no-one.  Only the most blinkered of ideologues would argue that withdrawing Tony Bland's treatment undermined some vital principle.  Saying that, however, raises more questions than can easily be answered: such as, how persistent does a vegetative state have to be before it justifies the termination of life?  And, by extension, where there is life, even conscious life but precious little by way of quality and no real prospect of improvement, would that make it OK to reach for the lethal hypodermic?

For Andrew Devine's parents the questions present themselves in the most acute and tragic form; for Andrew was also critically injured at Hillsborough.  Like Tony Bland, he existed for years in a deep coma and might have been allowed to die on the same grounds.   Unlike the Blands, however, Hilary and Stanley Devine held out, hoping for a miracle.  The twist is that Andrew's vegetative state did not persist: he came round.  Sort of.  In 1997 he opened his eyes and recovery seemed to be on the cards.  In 2009, twenty years after the disaster, the Daily Mirror carried this piece, in which the Devines come across not only as immensely stoical, appreciative of people's kindness, still full of "why's" about the dreadful events of 1989, but also stubborn going on denialist.  The photograph shows them tough, defiant.  They speak of Andrew's ability to understand what's going on, for which there is no evidence: only that he has some minimal consciousness, which has not significantly improved in 12 years.  The Devines seem to be great copers, but at some cost to their sense of proportion.

As I check this post for mistakes, "File on 4" is devoting a programme to the plight of persistent vegetative state victims, of whom there are 5000 in this country alone, and their distraught carers.  Gulp.  There but for the grace of God... Do the Blands ever look at the Devines and think: we were fortunate in that Tony never came round before the decision to end his "life" was taken.  That wasn't murder: Andrew Devine is comatose rather than in a coma, so if you ended his life, murder is exactly what it would be.  Which seems a harsh, legalistic judgement, but what else can you say?  He's not a candidate for assisted dying, because he's not alive enough to express a preference for life over death.  That you have no quality of life does not entitle anyone else to put you out of your misery; if it were otherwise, the dementia homes would go out of business.

Further reflection needed, possibly in the light of Terry Pratchett's programme on the subject.

Snippets

Odd reflections on Dad's situation...

I don't think I have recorded the social worker's visit, at the point where it was becoming obvious that he had dementia but before the formal diagnosis.  In one revealing episode he suddenly decided he was going to tell the kind lady about some short stories he had written, with a view to publication in at least the church magazine, if not for the general public.  Dad can construct a grammatically correct English sentence and compose plausible dialogue, and that's as far as his literary talent stretches: he's not going to be making the Booker shortlist any time soon.   More embarrassing than the triteness of his writing was his complete inability to reaalise that social workers don't visit in order to have little stories read to them.  But Dad had an audience, so there was no stopping him.  He had no idea how blatantly his behaviour betrayed his condition.

-o0o-

 An illustration of how timescales collapse in the mind of the pwd.  Dad was recalling the various chapels that had closed over the years - "in quick succession" was his phrase.  Well, one of them to my certain knowledge had closed before I was born, another just a couple of years back.  Succession, OK.  Quick - hardly.

-o0o-

In his prime, Dad was systematic, more so than I'll ever be.  His paperwork was always up to date, he kept lists relevant to his various interests.  One that he'd dug out on a recent visit, for old times' sake I guess, was a catalogue of hymns, showing the combination of organ stops that he would use for each tune.

Then there were files full of transcripts, painstakingly hand-copied from borrowed scores (this was long, long before the days of photocopiers).  He'd taken one from his music cupboard and it was sitting there on his piano open at a certain piece.  I sat down on the stool and sight read it.  "Bit of a stinker, that one," said Dad.  I gulped.  That's what he always used to say if I was tackling a hard passage and he heard me making mistakes, but jeepers, this was a doddle, completely straightforward; and a year ago he would have said the same.  His yardstick for what constitutes a "stinker" is a good deal shorter than it used to be.  Makes me wonder if he can still play as well as he could relatively recently.  I have heard that musical skills persist in pwd's even when other abilities (such as dressing yourself) are long gone, but I have yet to see the evidence in Dad's case. 

-o0o-

 In Grottsville as elsewhere, the wheelie bins are colour coded.  I think it's brown for organic waste, blue for anything recyclable, black for everything else.  Brown bins go out one week, blue and black the next, alternately.   Though not everyone seems to have a black bin, Dad certainly didn't.  Don't ask me.  Grottsville Council does not have a good reputation for organising such things.  Or indeed for organising anything.

As his confusion became more apparent, Dad predictably ceased to distinguish between the two bins.  If - and it was if - he remembered to throw stuff away at all, it would land in whichever one took his fancy.  I rang the Council, explaind the situation, and you'll guess what happened next.  They arranged for him to have a black bin, so that all his rubbish would go into the one place, and a black bin was duly sent to the house.  To keep life simpler for him.  What the Council didn't do was take the other two bins away, so Dad now has three bins into which he can chuck his random selection of rubbish as the whim takes him.

-o0o-

Fruit pastilles.  What's that about?  He's got stacks of them - a dozen packets or so, sitting on a kitchen shelf; and an old tin into which he's emptied the contents of another half dozen.  I don't think I've ever seen him suck one.  There must be a memory that tells him "I like fruit pastilles",  so he buys them, and it used to be linked with another one: "to enjoy fruit pastilles, take them one from the packet and pop it in your mouth" but that connection has now gone.  So the pastilles just sit there. 

-o0o-

This links with the sense in which he forgot my birthday.  That's to say he knows when my birthday is, though he's vague as to my actual age.  But he doesn't make the connection: if someone's birthday is due, you send them a card.  That's not just remembering, it's acting appropriately on the basis of the memory, and that's the competence he's losing.

Open window, mouldy quiche

This time, when I visited Dad, the house was reasonably tidy by his current standards.  Mind, it was the day after Zoe's second session of the week so he'd hardly had time to get things messed up.  There were still the remains of a meal-for-one sitting on top of the microwave from the previous day, plus a box containing a Sainsbury's quiche which I took out and examined: it was thick with green mould.  Presumably he'd removed box from freezer quite a while back, forgotten about it and buried it.  I pointed it out to him, and as you can guess his reaction was oh yes, there's a mouldy quiche in that box, just fancy.  Would he have thrown it away had I not pointed it out?  Doubt it.  Would he have eaten it?  Of course not.  He would just have left it until someone else (usually Zoe) disposed of it for him.  In a rational person you'd decry this as the behaviour of a complete slob.  In Dad, the so-what attitude is part of his illness.

He gets around on a mobility scooter, which when not in use sits in the garage, where there's no electric socket.  If he needs to charge it, there is an extension lead which runs from a socket in the kitchen, along a worktop, through the window, across the back yard and into the garage.  When the scooter is fully charged, Dad just turns the juice off at the socket, leaving the cable in place

The garage is padlocked.  The window is open.  All the time.  Just enough to let the cable through, but it can be pulled as wide as you like, allowing access to even the plumpest of burglars.  And this is the house of my father, so careful of security he never leaves the front door unlocked nor even the key beside it.  I was aghast, told him so but I don't think my concern registered.  "Zoe's told me off about that as well", he said, matter of fact.  Women tell you off, it's what they do.  Men ignore then, it's what we do.  I tried to explain that if he was burgled, the insurance company might well refuse to cough up once they found that access had been gained by an open, unlocked, ground floor window.  I think he might have got the message but there's no guarantee it's sunk in.

The obvious solution to his problem is to get a weatherproof external socket put in an outside wall near the garage, a simple enough job for a competent electrician, but I'm not sure if Dad understands that.  I shall have to organise it myself.

Vulnerable adults, eh.  Actually, one of the crime prevention measures Dad took years ago might still stand hin in good stead. At the front of his house there's a highly visible burglar alarm box, just under the front bedroom window. It's a dummy, but apparently these work just as well in deterring villains as the real thing.  

Reality boobs again

The Hitchhiker's Guide to the Galaxy, claimed Douglas Adams, its creator, is definitive.   If it contradicts reality, so much the worse for reality.

Dad was complaining, as he trundled his trolley round Sainsbury's, that they'd shifted products round in the aisles.  Frankly I doubt this; more likely is that his mental "Hitch-hiker's Guide" was giving him its own take on reality, which failed to correspond to what was actually out there; he was remembering wrong.

I have acquired a certain reputation in the family, over the years, for planning walks that go pear-shaped.  Whenever this happens I am accused of mis-reading the map.  Not true; my map-reading skills are second to none.  But the facts on the ground often fail to correspond to the map, or - in our family version of the Adams gag - reality boobs again.  The classic example of this was the day my wife  booted me out of the house with our children for the morning and I took them on a walk in mid-Wharfedale.  I planned a little circular trot using the 1:25,000 map, detailed enough to show the stone walls, never mind major features like bridges.

I mention bridges because as we came to the end of our walk, all we had to do to get back to the lane where I'd parked the car was cross the Wharfe by the bridge clearly marked on the map, the green pecked line of the public footpath superimposed over the blue of the river.  And there, in reality, rose over the Wharfe the complete absence of any bridge whatever.  It must have collapsed many years ago, only traces of its pillars remained but no-one had thought to inform the Ordance Survey of this.

There were only two alternatives: to retrace our steps, which would have meant getting home at least an hour late with two knackered, hungry and very fractious children; or wade across the river.  This being in the days before mobile phones, I had no way of letting my wife know where we were and she'd be frantic. There had been little rain of late and the Wharfe looked as docile as it ever does, so it seemed like a no-brainer.  It was still the Wharfe, though, a notorious stretch of water at any time.  And it did occur to me as I carried the second, heavier child across the main current, my feet negotiating slimy rocks on the river bed, that with the water halfway up my thighs I was only one false step away from disaster.  I made it all right as it happened, but still got a telling off from the missus when she realised how big a risk I'd taken.

Reality boobed big time that day.  But yesterday, back in Grottsville, it boobed in a different sense that provided a kind of metaphor for early dementia.

I know the town, I was brought up there.  But that was forty years ago, since when the developers have done their worst.  There is now an Inner Ring Road, the centre is pedestrianised, once major roads have been downgraded or blocked off, new landmarks have risen like concrete fungi, and whole chunks of the place just aren't there.  The one-way system would fox the Enigma code-breakers.   All I had to do was drive to a familiar road just north of the market place.  I'd allowed myself 20 minutes; it took me an hour and what was worse, I asked for directions twice.  The first person sent me to a completely the wrong place; the second one knew how to get there on foot but if you tried in a car you quickly found yourself confronted by a row of bollards.

Think dementia.  You know your way around but reality has gone and re-arranged itself without consulting you.  You can get from A to B, but you always used to go via C - G, and C isn't there any more, D isn't the pork butchers, it's a Tesco Express, E isn't on the bus route, F is a dual carriageway where there used to be a church, and G is a dead end.  You ask someone how to get to B but they don't know where you mean or they're not native to the region or you can't fathom their accent.  You get to B in the end but it's more luck than judgement and you've no confidence you'd be able to do it again.  Having dementia is like finding your way round the town in which you grew up where only certain landmarks are where they always were, others are missing, new buildings have sprung up to accommodate new-fangled industries, and none of the roads go where you'd expect.

You have to laugh

The other day a patient identified herself as Mrs - let us say - Johnson, so I asked if she had any children.  She laughed.  "Oh no, I'm not that old."

I'm wondering if she'd taken my question to mean "have you had any children recently" and meant to say in effect "do I look young enough" but it came out the opposite.

Which sheds some light on my dad's comment earlier today; I said I would drop him close to the supermarket entrance and then find a parking space, to which his reply was "that might be easier than you think" but in a tone of voice that  implied the opposite.  He may have been intending to say "easier said than done" but it didn't come out right - the pwd's vocabulary is always letting the side down.  You have to listen to the tone of voice rather than the actual words; and as the condition intensifies you often find yourself responding to the emotion in the patient's utterances with words that make no more sense to you than to him/her, and it doesn't matter.  It's almost like making music with them, an exchange of feeling rather than thought.

So what do I make of this one?  Responding to my lively demeanour on the ward - I'd been having a laugh with one of the healthcare assistants, this old chap said "there are some people who just bounce around, I don't know why.  Are they Welsh?"  I said "I don't think so - I bounce around sometimes and I'm not Welsh."  "Oh well," he said, "that's some consolation."

On the face of it, that's straight out of Reeves and Mortimer.  But the man was trying to communicate something, and maybe it was: whatever quality it is that makes people "bounce around" might not be one that you would wish to have.  But you don't have it, so that's good.  To be Welsh is to be foreign, in some way alien, and I'm not, I'm "normal".  I might be over analysing the language here.  Reduced to its basic emotions, our conversation went: Old man: something is puzzling me.  Me to old man; Well you needn't be puzzled, everything is fine.  Old man:  Thank you, that's kind.

But it was still a wonderfully bizarre moment.

The cancer story

Dad's younger brother died of cancer in his fifties.  Not long afterwards Dad himself took early retirement - this was back in the days when men were sometimes offered packages they would have been fools to refuse.  For some reason these two facts have got linked in his mind as cause and effect.  His brother died of cancer, which meant that he had to retire?  No, I don't get it either.  Dad reckons his brother contracted the disease because of stress: well, it's true he had a quite high-powered job, but so do lots of people.  Dad's own job wasn't particularly stressful so why should he be any more prone to cancer himself?  Anyway, the narrative is now fixed in his memory.

What's more, it keeps coming out.  Every week my sister in law drives him to Sainsbury's, does her shopping, waits a no doubt unconscionable length of time while he does his, drives him home again.  She's good like that, but her two complaints are 1] he pongs of wee - to which unsavoury subject I must return and 2] she keeps hearing the same stories.  One week Dad told her, not for the first time, about his brother's cancer on the way to Sainsbury's.  Then there was an appeal for some cancer charity at the supermarket, so whaddyer know: she got the same story again on the way home, with no memory that he'd already told her, earlier that morning.

So far, so typical of dementia.  Here's the weird bit.  This week I was down in Grottsville, visiting Dad on what was his normal shopping day and we'd agreed I would drive the three of us to Sainsbury's.  So this time I got the cancer story, but as if he was telling my sister in law - who if she were hearing it for the first time could not have been expected to know.  Dammit I'm family, and I do know.  What's more, I shared in the conduct of my uncle's funeral with the local minister.  Dad remembered that, and told me that "Peter" (that's me) "helped to take my brother's funeral."  He talked to me, about me, as if I was an absent third party.  In that moment he neglected to register who I was. 

In the later stages of dementia, sufferers forget their own family members.  Dad's a long way off that yet but this was a chilling taster for what may yet be to come.

Singing with pwd's

Part of my job involves carting my allegedly portable keyboard around day centres and wards and engaging service users in singing.  I try not to "entertain" them - other people can do that.  My concern is more therapeutic: I'm trying to get these folk to respond to songs in ways that enhance their well-being, at least for the moment.  Outcomes vary, but one learns by trying things out and responding to feedback from both the client group itself and from staff. 

You don't have to be working in this field for long to realise how deeply ingrained are older people's memories of songs they've grown up with.  It can be deeply moving to hear folks burst into song who may otherwise have lost the use of language.

I've produced a large-print folder of songs which I give out to particpants and keep adding to as time permits, as ideas occur to me and in response to requests.  If I need to learn something new I will listen to it a few times on Utube, work out the chords and I'm away - don't need a printed score, and it's rare that a chord sequence defeats me.  (One of these days I will get "The Girl from Ipanema" licked.)  I can stand at the keyboard, let my fingers make the music while keeping eye contact with the audience/participants.  Sometimes I'll set the machine rhythms going, and finger the chords, which means I can play with one hand and gesticulate with the other. Feels like cheating but hey.

Although a bunch of older people will sing along merrily enough to wartime songs, many of them only relate to them in the way I do - they heard their parents singing them.  They'll have memories of "community singalongs" with Uncle Bert at the honky-tonk.   They know "Somewhere over the Rainbow" because everybody has seen "The Wizard of Oz".  But we're talking about a generation for which that was already an "old film" when they were children.  They're wartime babies, or boomers.  Their own music may well fifties and sixties stuff, rock and roll, Elvis, the Beatles.   They might remember Abba because their kids loved them; they know the great show songs - the Rogers and Hammerstein musicals, "Oliver", "My Fair Lady", and maybe even Andrew Lloyd Blithering Webber.  (Sometimes one has to suffer for one's art.) 

You have to cover a wide range and get a feel for the group's mood on the day.  The presence or absence of one particular member might make all the difference: I'm thinking of one lady who clearly used to jive, so if she's there we'll have Da Doo Ron Ron Ron and Rock Around the Clock and she'll be dancing with a care worker.  Other weeks everyone seems a bit sleepier so I'll go for Just a Song at Twilight and Danny Boy.

The key to an activity in which you are aiming to get pwd's singing is very simple and just about foolproof: you need staff and carers to be engaging with the service users/patients.  If they are on board, you have a therapeutic intervention: if they're not, you are a performer and the audience is cast in a passive mould.  There's a centre I visit where this is completely understood.  When I arrive, the percussion instruments will be out, there will be something like a 1:3 staff/service user ratio, which is about right.  It means that staff can look out for those who don't naturally respond to the songs, who can't find the right place in the book, who need encouragement to bash their tambourines and generally be drawn into the activity. 

At the other extreme I worked, supporting the professional singer who leads the overall project, in a care home setting. (I'll call her Val and she's going to pop up later.)  Here you can expect the dementia to be more extreme and staff really need to earn their crust.  Well, the staff had been told they needed to be in the room and they were, but you needed no expertise in body language to recognise that two or them at least were there very much on sufferance and could not abide all these antiquated sentimental dirges.  And guess what, the residents just slouched in their chairs and barely responded to the music at all.