We forget things anyway

Human memory is extremely limited and capricious anyway: why does the more accelerated loss of it in later life matter?  And more intriguingly, out of the vast oceans of detail that we forget, what makes us retain the particular droplets of information that we do?

UHU 611H.  The registration number of the first car I ever owned, a blue Mini Traveller.  I suppose your first car is always special so it may not be surprising that I can't recall the registration numbers of any cars I've had since, even the one I parted with less than a year ago.  35140, later with a six in front: a phone number from twenty years back.  Don't know why that one should stick when I can't remember others both before and since.

92228.  My mum and dad's old Co-op divi number; 64334, our next door neighbour's.  Must be more than forty years since I could have made any use of that information, but it's stuck there, taking up memory space I'd rather use for something else.

Odd lines from shows I've been in.  I played the king in a Sunday School sketch, with the girl next door as queen.   We'll have been around seven years old.  We had a row, because the king wanted crumpets for his tea and the queen wanted muffins.  Somehow mediation took place and we said the last line jubliantly together "muffins and crumpets both for tea".  A lesson in compromise.  Why do I remember that particular dramatic triumph and no others from that period?  I was always a performer, and chapel life provides many opportunities for cute little show-offs to do their party pieces.  But it's that one item that lingers, like a fragment of wreckage floating on the sea, the rest of the vessel drowned.

Buried memories that suddenly spring to the surface with startling clarity.  I didn't consciously know that the Blackberry Farm books had been around in my childhood and that my mum must have read them too me, but they seemed like the sort of thing our little daughter would enjoy so we bought a couple.  I was reading one of the stories at bedtime, then wham!  I turned the page and not only was there Robin the Postman eyeing her, he was eyeing ME - not as a grown man but as a pre-school child back in Grotsville.  I was re-living a memory I didn't know I still had.

You accumulate a store of basic "general knowledge" - dates of kings, the capital of this, longest river in Peru - which enables you to impress on quiz nights, if the right questions come up.  But it is in fact "trivia" and a few years back there was quite a market for books stuffed full of momentarily fascinating but utterly useless information - and even advertised as such.  As you reach the time of life when retaining information that you really do need - passwords, PIN numbers, names of colleagues' wives and children - can be quite a challenge, you wonder why you spent so much time earlier on accumulating superfluous data.

Some facts seem so basic that it seems fair to assume that a person who can't recall them isn't, for whatever reason, all right.  Battle of Hastings, 1066, first woman Prime Minister, capital of France.  For pity's sake, everyone knows when the second world war was, especially if they fought in it.  But when the occupational therapist did her memory and cognition test on Dad, he couldn't say.  Any more than, a few weeks later when another clinic did the test again, he knew who the US President was who'd been assassinated in 1963.  For those who were alive at the time, it was one of those "you could say exactly where you were when you heard" moments - like 9/11, or the car crash that killed Princess Diana.  I've actually been to Arlington and stood on the plaza at Kennedy's memorial, weeping over its potency to recall what it meant to have the privilege of being young in the 1960's.  That Dad couldn't recall these things was a mark against him, so to speak, a clear indicator of more than ordinarily failing memory.  But stepping back, the wider question occurs to me: why does it matter that we can recall certain facts regarded as "key", when we forget so many others?  And who says which facts are "key" anyway?

Dementia is about so much more than losing your memory.  What bothers me about Dad is not that he fogets facts, but that he's losing basic life skills, isn't on top of his life, and he doesn't realise.  That's the scary thing.

An Alzheimer's prayer

March 25: "Partial Recall" was unsettled today.  No problems with the entertainment this time, a bunch of ladies from across the county performing songs and poems about getting old.  Their material was perfect for this audience and some of the writing quite clever - so sharply observed it made you wince more than chuckle.  But a number of the customers seemed agitated, their carers let them wander around and get in the way of the performers (who responded with good humour and considerable resourcefulness): one lady "sang" along at such a volume it made listening difficult: which in turn caused other customers to get restless, and so the mood spread across the whole cafe.

At the end, a carer handed me a handwritten copy of this:

Alzheimer's Prayer

Please grant my visitors tolerance for my confusion,
Forgiveness for my irrationality,
and the strength to walk with me
Into the mist of memory my world has become.
Please let them take my hand and stay awhile
Even though I seem unaware of their presence.
Help them to know how their strength and loving care
Will drift slowly into the days to come
Just when I need it most.
Keep their hearts free from sorrow for me
For my sorrow when it comes only lasts a moment –
then it’s gone.
And finally please let them know
how very much their visits mean,
How, even through this relentless mystery,
I can still feel the love.
Amen

He didn't know who'd written it; turns out no-one else does either.  Googling on a key phrase brings up hundreds of listings, always attributed to Anonymous.  It feels American in its inclusiveness - there's nothing to identify it as specifically Christian (some versions include a few "Dear Lord"s; this one is addressed to whatever entity might happen to be in the neighbourhood).  I restrict the Google search to "pages from the UK" and that narrows the hits down to single figures.  Thought so.

Actually, it isn't quite complete.  The full text, after "need it most" has 

"Let them know when I don’t recognize them that I will . . . I will."

I ponder this omission and wonder if my friend at the cafe felt unable to own that hope.  After all, at the severe end of Alzheimer's recognition goes, and doesn't come back: if the reference then is to a heavenly reunion (I won't recognize you in this life, but I will in the next) that may be a leap of faith too far for many.

What makes the piece interesting is its attempt to emphasize with the pwd, and pray through his or her experience:  It's not a prayer FOR those with dementia, but an imagined prayer BY a sufferer, as one might compose a prayer by one's dog.  No demented person would ever be able to offer it, because if they could they would not have the condition it proceeds to describe.  So how do you pray for dementia sufferers?  That they will be healed?  That they will not become aggressive or distressed?  That they will be able to end their days surrounded by the very best of care?  These are hopes, but prayer does not work like this. Prayer entrusts its subject to the love of God, asking that "all shall be well" despite the onslaughts of confusion and indignity. The sense in which it "works" (a dodgy idea, whoever said that prayer was a means to an end?) comes from the feeling that one has done all one humanly can; that what happens from here on is out of human hands.  And I suppose that to lose faith is to get the feeling that divine hands are just as clumsy and inept as ours; that nothing can be done, we are helpless, there's old age, dementia, death and curtains.

Lord, help our unbelief....

The ironies of care

March 15: A momentous couple of days begins and I'm struggling to keep all the issues and questions straight in my mind.  Later today, the social services team will assess Dad's care needs at home; tomorrow we visit Grotsville's downtown hospital for an appointment with the mental health team.  While I'm with him I need to talk about power of attorney and stuff to do with his finances.

On Saturday a legal eagle who specialises in matters to do with care of the elderly offered an advice session in the village hall.  He mentioned in passing that he's worked inter alia for a national old folks' charity for the past 20 years, and had been in the habit of going on a refresher course to keep himself up to date with all the regulations.  "Now that's not enough", he complained.  "I need to go every three months".  Good grief, I thought, if even an expert needs to run just to keep up, what hope is there Joe Public?

Dad can manage at home, for the moment, but there's no telling right now how long the "moment" will last.  My feeling is that if he's still living where he does now at Christmas he'll be lucky, but Christmas 2012? - forget it, on his present rate of decline.  I'm guessing that within the next 18 months we'll need to have organised a move.

What might the options be at that stage?  Here I need to think about cost, quality of care, about what's right for Dad but also no more inconvenient for me than it has to be; and without being mercenary, I know that Dad would not want money that he would prefer to pass on to me to get swallowed up in the costs of residential (and maybe nursing) care.   I must work out a package in which neither he or (ultimately) I lose out more than we have to, but I'll need to do a lot of research and consultation before I know what the "right" package would look like.  It doesn't seem quite fair that a man who has always been careful and methodical with his money should have the bulk of it commandeered to pay for his care in his final years, when others who have squandered their substance wind up in care homes for which the state (or taxpayer if you prefer) foots the bill.

I don't know what a fair system would look like, but am conscious of many anomalies.

If you're ill the NHS will look after you, and no moral judgement is ever made nor could be.  Those who abuse their bodies in various ways - excessive eating, drinking, smoking, drug-taking - will contract a host of diseases which may be fearfully expensive to treat, but treated they will be.  No charge.  But the old man whose only crucial health problem - dementia - is in no way the result of a dissolute lifetsyle and doesn't need to be in hospital will face a hefty bill for his care.

If Dad had wanted, a couple of years ago before lameness slowed him right down, to go on a world cruise, he could have done so and no-one would have batted an eyelid.  But if he now offered me a couple of tickets for a world cruise, or the cash equivalent (which frankly I would rather have), the authorities would take a dim view of this when it came to assessing his financial circumstances: and interpret it as "voluntarily impoverishing himself", in order not to have to hand the money over to a care home.  So he'd be penalised for trying to help his son out, but not for indulging his own wishes.

I suspect this will be the first post of many on this subject.

A favourite story

Dementia has its lighter side.  A lady was once telling me about her beloved husband - "we got married in 1927 you know".  A quick bit of mental arithmetic suggested that this would make her around 100 years old, which she clearly was not.  Later she told me she'd been born in 1946, so there was an obvious explanation.

"I think you may have got a bit mixed up," I suggested.  "You were married in 1927 but weren't born until 1946 - you mean the other way round, don't you."

She looked at me like I was a bit slow.  "Oh no, they had ways of sorting things like that out in those days".

Aggressive Behaviour

Mentally ill patients don't always have the best of manners.  It's no good being a chaplain in this world if you can't cope with being told to eff off.   You respond, if at all, with something like "I'm sorry you're feeling so upset".  Staff might tell the patient off; which might or might not have any effect.  It might not even be you they think they're shouting at, but some phantom presence conjured up by their psychosis.  Alternatively they know exactly who you are and they really do want you to go away.  Perhaps because you represent the Church and that has bad associations for them; you might remind them of the vicar who conducted Mum's funeral, or the priest who messed around with you as a child.  Or you're another authority figure who is helping to keep them locked up on this bloody ward.  Or maybe it really is something you said.

On a dementia ward there may be no accounting for it.  Vince started swearing at me today, but apparently he was that way out and had been swearing at everybody.  Next time I see him he'll have reverted to his customary civility.  Was he feeling the frustration of being cooped up in a strange place against his will and aware that the words that come out of his mouth don't make much sense even to him, let alone anyone else?  Then there was Nigel, still with the bearing of the foreman he used to be, still wanting to clap his hands and get everyone organised, but there's no context now, and we can't even pretend to comply because his language is vague and disjointed.  Come on, bring it over here and let's have no more of that.  It's all you need to fix get get cracking because you don't see I've warned you ... Nigel is easily distracted but you sense from the gleam in his eye that he'd deck you for whatever misdemeanour you're supposed to have committed if he could stay focussed for long enough.

People like Nigel need to be locked up, in a healthcare environment of course, for their own safety.  Meanwhile Colonel Gadaffy is displaying a different magnitude of aggressive behaviour as he tries to quell the revolution.  Let's see if we're still talking about that in six months' time.  He's delusional, of course, and has been known to be so for a good while; which has not stopped our country and others from supplying him with the very weapons he is now using against his own people. 

There's nothing delusional about our policies: if you supply arms to oppressive regimes they will get used, so they'll need some more.  Or at least further stocks of ammunition.  We've created a market for our own industry, and the fact that it's an industry dedicated to destoying things and killing people is incidental.  Cameron would not put it like this, but he's a PR man concerned only about presentation.  He'd talk about defence and security: for which, in a Libyan context, read torture, censorship and secret police.  

Having lived through Thatcher, Blair, Brown and now Cameron I've become convinced that an essential qualification for high office is a cavalier disregard for the truth.  Politicians lie so frequently they barely realise they're doing it, and if they do tell the truth it will only be for strategic reasons.  For me it all goes back to the Bomb, which doen't deter, doesn't defend, can't be used this side of Doomsday and is therefore a criminal waste of money and human resource.  Politicians have had to learn how to lie about that, and the habit has spread to other areas, to the point where it's as well to assume you are being lied to unless there is clear evidence to the contrary.

Meanwhile, back among those who are supposed to have mental health problems ....

Funeral Music

At the start of a presentation recently I asked people if they had thought about the music they'd like at their funeral: I don't want to know what you've chosen, I said, just whether you've considered the question.

Most people had, and I'm wondering what that's about.  It's not as though they expect to be consciously present at the occasion, making sure all their wishes are carried out.  But they care about being remembered, and that means associating their memory with a particular piece of music. My current choice would be Baker Street, a song I would kill to have written and have sometimes covered in public.  The lyric hints at a story but leaves you to piece it together yourself; it ends with the promise of a new morning when "you're going home" - very apt for a funeral, doncha think? And spines were just made to tingle to that saxophone.  All together now: drrrrrrrrrrrrrrrrr wam pom pa pa pah!

For my dad, it's going to be Karg-Elert's rhapsody on the hymn tune "Nun Danket", to which "Now thank we all our God" is sung.  If it sounds obscure, that may be because you don't know your organ repertoire; but Dad of course does, or did, and this was a piece I remember hearing him play when I was quite little.  It's triumphant and loud, one for pulling out all the stops.  Many people will recognise it without being able to put a title to it.  While not technically difficult (Dad was competent but never a virtuoso) it's rewarding and very much one to end a recital with, an encore, follow that.  I doubt he could play it now, although you find with some musicians with dementia that they retain their instrumental skills even when other functions have withered away.  The point is this: I want him to be remembered as the musician, and therefore the man, he was at his best.  He's got some grim times to come, but they need to be seen in the context of a long life in which he's made a lot of music and enabled other people to make a lot more.

Cutting the care?

The Tories are back in power.  So naturally the public sector gets it in the neck.  I don't believe this is entirely because we have a national deficit to repay, caused as much by criminal recklessness among top financiers as by political mismanagement; even if we had a healthy balance of payments, the Tories would still be after us.  They just don't like public services.  They schmooze up to Murdoch, the artful tax-dogdger, and rail against the BBC, which has not to my knowledge ever hacked any celebrity's phone nor sought to boost its audiences by showing pictures of topless girls, and which is legally bound to provide accurate and impartial news coverage, a concept quite foreign to many of Murdoch's outlets, Fox News being only the most notorious.  They smack the bankers' little handies for helping themselves to obscene salaries and bonuses, and the bankers tell them to get stuffed.  So instead they cut funding to charities, bang on about the "work-shy" (like there are all these jobs around, with unemployment at 7.9% and climbing - you wait until the year end) and tell us we're all in this together.  You wouldn't mind so much if their "market knows best" ideology delivered better services, but does it?  Under Major they privatised the railways and gave us Railtrack, plus a ticket pricing system that makes quantum mechanics look like Enid Blyton.  I rest my case. 

Politicians, of whatever colour, cannot resist the urge to tinker with the NHS.  As the piper's paymaster they must be seen to be calling the tune, so the NHS has been undergoing reform for as long as I can remember.  There is of course no consensus about what's wrong with it and whose advice should be sought as to how it might be improved, but it may be taken as read that the last people politicians consult with when they want to reform any given organisation are the people actually running it.  (I found in my days as chair of governors for a primary school that, in the eyes of the Department of Education, they knew how to run schools, parents knew how to run schools, inspectors and governors knew how to run schools, even pupils were supposed to have some idea  how to run schools; but teachers, what did they know?)

So, naturally, the latest lot of reforms are meeting enormous resistance, and catastrophe is predicted.  No-one has asked rank and file NHS employees how they would improve the service, and there's a reason for that: we dissent from Government ideology at the most basic level.  We work for the national health service.   Tories think it should be a business.  Like it is in America, whose health service is the envy of us all .... er, not.  It is of course the most expensive in the world; and something like the 37th most effective in terms of service provision, according to official figures. 

In a real market place it's good to have competition and choice; in healthcare you just want quality.  I don't need to choose between various hospitals for my treatment; I just want to know that my local hospital will do its job properly.  If it doesn't, I want to be able to hold it to account and ask for improvements: I am not looking to "take my business elsewhere".  By opening up what is still a recognisably national health service to the private sector, Tory policies will have two effects, one intended, the other inevitable: it will become fragmented and regionalised; and care quality will suffer as commissioners award contracts to, not the best, but the cheapest, provider.  But it will suffer much more in some regions than others, so the idea is that we shop around for the best care, which will then make the under-achieving providers buck their ideas up.  If this produces a better NHS than we have now, if indeed there stll is an NHS in ten years' time, I am Schroedinger's cat.  What it will produce is a lot of demoralised staff - those that still have jobs - a postcode lottery of care quality, and some very well-heeled CEO's of private healthcare corporations.

It had better not impact on my dad's care, that's my main concern.  When he went for his long appointment at the elderly care clinic I was simply staggered at the effiiciency and thoroughness of the clinical team.  Royalty could not have been treated better and I wrote a letter of thanks to tell them so.  This was later printed in the house newsletter, but minus my entirely reasonable and reflective comment that in a sane world the NHS would be looking to reform Government, not the other way round.  Pressure of space no doubt led to the omission.  Lansley had better not try fixing that bit of the service because anything less broke I never saw in my life.

Looking ahead though to the kind of care Dad will need in the future ... well, here's an extract from an article by journalist Hugh O'Shaughnessy, about the care his wife received from the NHS.  Having praised them to the skies for their work earlier, he then reflects on his experiences as his wife drew closer to death:

"The NHS offered to provide someone to be awake in her room from 10pm to 6am and thus relieve the burden on the household. The first carers came from the Marie Curie organisation, a British charity created in 1948, when the NHS itself was established. The Marie Curie personnel were conscientious, well trained and punctilious.

Sadly, subsequent ones did not match up. They seemed inexpert, ill-trained and with a tendency to settle down to sleep shortly after they arrived at the bedside of the person they were expected to look after throughout the night. Distrusting their conduct, I took to sleeping in the same room as Georgie, sending the carer into another room and thus defeating the objective of the exercise.

Then the carers began coming late. The person expected at 10pm on Christmas Eve arrived at 12.15 on Christmas morning. Apparently her managers, truculent people unwilling to listen to suggestions, had not organised the minicab from her south London home. On a subsequent evening two carers arrived, each claiming to have been sent by their managers. The NHS had, I later gathered, been obliged to take the second-class service offered by a disorganised offshoot of some US corporation: unsurprisingly its low standards allowed it to undercut Marie Curie's bid for the work. It seemed bizarre that the NHS was manoeuvred by an aggressive privatisation lobby into accepting a clearly inferior service from a company run from a country incapable of organising a health service for its own citizens.

At this rate I know that I – perhaps most of us – will die without the care Georgie enjoyed."

This is one man's view, and I have still to study the many responses posted to it online; some will offer similar stories, others say hang on, the NHS often lets its patients down while private care can be first rate, and the debate will then polarise along predictable fault lines.  And yes, I am a Guardian reader whose hostility to all things Tory runs deep - I would say with reason, as naturally I would.  But Hugh O'Shaughnessy reports his experience and that's what you can't argue with.  My dad has had, so far, 5 star care from the NHS and you can't argue with that either.  If as time goes on he is less fortunate AND that is attributable to Lansley's reforms, the minister will be getting a piece of my mind.

O'Shaughnessy's piece, and the discussion prompted by it , is here.

Some things never change

You have to know a person to understand whether their behaviour, when it seems unreasonable, is so because of their dementia or whether they're always like that.

Dad has always been careful with his money; his generation and his class had to be.  He started out in married life without a lot in the bank and never had a particularly well-paid job.  But one particular facet of his character is a deep hostility to household bills, which he would always scrutinize for hidden extras.  A particular bugbear was "standing charges", to which he took vehement excepton, writing letters of complaint to the offending utilities, convinced he could shame them into changing their policies.

So when recently he started complaining about his high telephone bill and demanding to know what all these standard charges were for, that wasn't dementia so much as an old tape playing in his head, Dad being dad.  All right, he hadn't made such a fuss about bills in recent years, recognising the futility of challenging them, but it was still in character.  Dementia still came into it though; he would never have previously suggested that when he went back to the TV shop to enquire about his missing part, he'd take his phone bill along to see if they could sort it out for him.  Why, Dad?  "Because it says on the receipt that they'll help with anything electrical".  Dad, I said, phones are phones and tellies are tellies, two different kinds of appliance?

I think I got through.  Next time we spoke he'd paid the bill.  A professional carer might not have recognised that Dad, in carrying on like this, was just being the man he's always been, with a bit of confusion on top.  Sometimes there's just no susbtitute for having known someone all your life.

More like a patient than my Dad

"Community health team?  Who are they?  Why do I need to see them?  There's nothing wrong with me!  And how come you know about this appointment and I don't?  You're plotting behind my back, aren't you?"

These would be typical responses from a person with dementia, feeling that matters for which he would normally take responsibility have been organised by others; which of course is precisely the case.  What he won't realise is that this is happening because he can't act appropriately in his own interests.

Dad does indeed have an appointment with a community health team.  The word "mental" should be inserted between "community" and "health" but I don't want to tell him that.  I was contacted about the appointment first and told  him later because that's the arrangement I negotiated, and it's common practice.  There is somthing wrong with him: he senses it but we haven't given it a name, and I'll take advice from the team about whether we break the news to him or not.  Albeit with his interests at heart - I don't want him to be any more anxious and confused than he is anyway - I am "plotting" behind his back. 

But he doesn't mind how I fix things.  If I've arranged an appointment for him, with some unknown team, he'll shuffle into the passenger seat and let me drive him there.  He hasn't asked me what they'll be discussing with him.  If I tell  him Social Services are coming to re-assess his care needs, that's fine, they're coming.  The lack of curiosity is almost scarier than aggression and paranoia would be, although easier to deal with.  He's unhealthily compliant right now - a "vulnerable adult" indeed, who would be so easy to rip off or exploit that I fear for him every day he has to live on his own.

Me:     "We need to think about where you're going to live."
Dad:    "I don't want to move."
Me:     "Perhaps not now, but you need to start thinking about later on."
Dad::   "I suppose you're right" - as opposed to "I'll be fine/you're not thinking of putting me in a home are you/what sort of places might we be talking about here?"
Me:     "And had you thought about moving down to Midshire, to be nearer me."
Dad:    "Oh no, I wouldn't want to leave Grottsville, why?"
Me:     "Because if I was nearer to you I could come and see you much more often and I wouldn't have all the driving to do." 
Dad:    "Oh, well we could think about that then."

Acquiescence again.  It's like when he hears me trying to organise things for him he slips into the same deferential attitude that he would towards a doctor or social worker.  I cease to be his son and become another authority figure trying to make sure he's all right; and he's not so much my dad as one of the pwd's I meet at Partial Recall, or at the day hospital.

Prattling TV

"Edith", featured in my previous post, has a line about the telly "prattling to itself in a corner".  This reminds me of the not-very-old postmaster in a village whose little church I once served: he'd contracted Alzheimer's and was at the point of needing residential care.  His wife had already had to take the car keys off him - he can drive OK, she said, but if he meets an oncoming vehicle on a narrow lane, he won't be able to deal with it.  (Dementia is about losing not just your memory, but familiar competencies as well.)  More recently he'd been getting irritated by the television.  "Why is that man shouting at me?" he asked his wife in some distress.  That one, I have to admit, has passed into our household language and is our standard phrase for complaining that the TV is on too loud.  It illustrates how dementia sufferers misconstrue their surroundings and respond inappropriately.  For this poor man, the TV screen was no longer there and the man he could see was a real presence in his own living room, shouting at him.

Dementia ward staff, care home assistants, know this or damn well should, it's basic: patients lose their ability to interpret TV programmes and may find them unsettling, with the rapid movement of images and cutting from scene to scene.  Yet so often I visit a ward or a care home and find the infernal machine switched on, blaring away, usually with no-one watching or, if they are, failing to grasp what's going on.  There may be a place for TV as reminiscence, familiar old films or "memory lane" documentaries, or maybe for gentle nature programmes, but much of the time the box is switched on without a thought of its impact on patients - rather a poor do in what should be a therapeutic environment.

It occurs to me to ask if tv programmes have been made, not about dementia - plenty of those in recent years - but for dementia sufferers.  Googling brings up this one almost at once, confirming my reservations about the box:

"Engaging in a hobby like reading a book, making a patchwork quilt or even playing computer games can delay the onset of dementia, a US study suggests.

 

Watching TV however does not count - and indeed spending significant periods of time in front of the box may speed up memory loss, researchers found."  (BBC website, 18 Feb 2009)

That's not what I was after.  However, surfing failed to identify any therapeutic application of the medium, which is revealing in itself.  Music therapy, drama, dance, art therapy, yes: TV therapy, no.  Switch the damn thing off, let's play dominoes.  Might not sound as thrilling, but it could actually be better for the brain.

On the wider subject of the damage that TV does to our personal development, from childhood up, this is a provocatively argued piece.

An old poem revisited

In one of my manic phases, a few years ago now, I took to writing poetry, and gave it up again when I returned to normal, as you do.  The following effort is of obvious relevance to this blog:

Edith

Gradually things stop happening.  The fortnightly
drip of her neice's letters slows as if someone's
tightened the washer.  A former neighbour manages
the awkward double bus journey across town to
Camelia House (Rusty Sidings, as Edith calls the place)
only when her gaoler, arthritis, nods at his post.
The vicar drops by with his back of a lorry eucharist.
It breaks up the day, much like a zimmer frame trudge
to the loo.  The telly prattles to itself in the corner;
Edith can't focus, not in these glasses, and her ears
are due for a syringe.  She flips to the end of her large
print whodunnit (implausible plot, no characters
likeable), checking her guess at the culprit.  Thought
it was him.  This afternoon in the non-smoking lounge
there'll be Joyce Grenfell monologues, and songs
from old shows, presented by Maurice and Lorna
with Duncan on keyboard.  They don't mean to patronise,
but Edith could tell them it's Wednesday, and who the
Foreign Secretary is, not like most of these bangers
and moaners and why don't we all sit legs apart like
lock gates and show the world our knickers?  Because
losing your dignity is like falling asleep: you only see it
happen to others.  When your time comes you don't
know.  Spare me that, Edith prays to the air with
its tang of incontinence.

Answered prayers don't always look like a dead
spinster, to whom the vicar is glad he gave communion
so recently, while her next-of-kin neice will be
saving on stamps, feeling guilty at feeling relieved
that the stroke was as massive as out of the blue.
She wasn't your invalid type, not our Edith;
few invalids are. Slipped in her armchair, her new
library book on her lap, open at page 38: by which time
the mystery is announced, though not of course
solved.  Much as in life.   Favourite author of Edith's,
she thought though: not as good as she once was,
she's tired, running out of ideas.  Aren't we all. And
whether she checked the last chapter to see if she'd
fingered the villain, as usual, before she ran out
of ideas altogether; whether her last thought was
 "that explains everything" - God knows.

Perhaps.

-o0o-



It comes, clearly, out of my experiences as a clergyman going round old folks' homes.  "Edith" will have been some composite of the church members I'd visited, in full possession of their own marbles but placed, not to say dumped, in some wretched place where most of the residents were far gone with dementia.  I make no great claims for it; the mannered line breaks remind me that I'd been reading the poetry of R S Thomas before my muse decided to run amok, but clearly his craft and concentration have completely failed to rub off on me.  On the other hand I wouldn't be reproducing it here if I didn't feel it had something to convey.

Edith's death was timely, she "wasn't the invalid type"; but that's a hollow sentiment, as I immediately acknowledge - "few invalids are".  Which brings me back to Dad.  He's not the type to get dementia, to be bundled off into a care home, and my wife always reckoned he'd go, when he went, suddenly - like Edith.  it would be in keeping with the kind of person he is.  But we don't all get lucky, like Edith; and of course there is no dementia type.  Why the condition strikes some and not others is not really understood, there's neither rationale nor justice in it.  Spare me that, was Edith's prayer, seemingly "answered"; but it's too late for Dad, his dignity already slipping away and he's the only one who doesn't know.

One little detail "dates" the piece in a way I couldn't have predicted - the reference to a non-smoking lounge!

There's always someone worse off. Blah blah.

The day began and ended with terminal cancer.  Found out today that a colleague's wife has it, while Ron, who sings next to me in second tenors at St Cuthbert's choir was told, in July 2008, that he had "two to three years" to live.  He's not a well man but looks set fair to defy his prognosis all the same, and his breath control, the sense of pitch even in the midst of dissonance, as unfaltering as ever.  We're working on Rutter's Requiem, which is quite gloomy in parts.  The Agnus Dei in particular is queasily chromatic, not sure what key it's in, and its middle section reminds us that "man that is born of woman hath but a short time to live, and is full of misery".  Life's a bitch, and then you die.  Thanks for reminding us, John.  "In the midst of life we are in death, we are in death, we are in death" sing the men, while the women reprise the main theme above them.  Then we reach "I am the resurrection and the life, saith the Lord".  I find this the most musically pedestrian bit of the whole work, which seems to offer death as a land of shades, or maybe a big sleep, but there's no gloryland that outshines the sun here.  And Rutter can do glory hallelujah with the best of them when the mood takes him.

Ron does not seem to have been well served by either his GP or the hospital.  The significance of the back pain with which he originally went to his doctor wasn't picked up; at a recent outpatient appointment he was asked "aren't you having such and such a treatment", said no, to which the response was oh, well you should be, we'll put you on the waiting list - and this to a man who's already on borrowed time.  It's not good to go into the last chapter of your story feeling that you can't trust the people responsible for your healthcare.  Ron complains they don't even answer his questions properly.

There's a lot I should be thankful for.  Dad's health centre has an excellent reputation, borne out by my conversations with staff, and I have - so far - no complaints about the care he's recieved as a hospital outpatient, or indeed two or three times in recent years when he's been admitted.  Social Services seem to be on the ball too; we'll see how thorough they are in assessing him in a couple of weeks.  But then he is an old man - ten years older than Ron, while my colleague's wife is younger than me.  If his days are numbered, at least he can hardly complain that he hasn't had enough of them.  Where I take issue with Fate is in the way it looks as if his life is going to end.  There's no need for that. 

But then there's no need for cancer to strike at men and women in the prime of life, at teenagers, children, babies: and it does.  I suppose right now we should be grateful we're not in Libya, as Gadaffi prepares to fight to the death, not caring how many he slaughters as he goes, and the West decides what to do for the least worst.  Nor am in New Zealand, knowing that my loved one is under a certain pile of rubble after the earthquake, pretty well certain by now that they've died but not daring to wonder if it was all over in a moment, or whether they took hours, days to give up the struggle, unable to cry audibly for help, maybe a few feet from would-be rescuers.  By comparison with your average Libyan, many New Zealanders, my colleague's wife or even Ron, Dad can consider himself lucky.  He's had his threescore and ten and a dollop on top.  But still: who would choose to go the way it looks as though he will?