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.