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.