Wednesday, 25 May 2011

Power of attorney

I first thought about getting power of attorney some time ago, but every conversation with people professionally concerned about Dad had given the same advice: don't hang about, get on with it.

I am not one of life's getters on with it, but this was different.  Even so, I managed to put it off for a respectable length of time.  My first thought was to arrange it myself.  In theory this is not difficult.  You can print all the official forms off the internet and get them witnessed.  I tried to do this and was well on with sorting out lasting power of attorney for health and welfare.  Then I had another conversation with a legal eagle who said: don't bother with that one.  By the time your dad loses his capacity to make decisions about his care arrangements, you will be brought into the planning as next of kin anyway.  The one to bother about concerns property and financial affairs.

At this point I had a mild panic.  It's not that I don't understand money in principle, I do; what fazes me are the little details.  I think I'm mildly innumerate, e.g. if I'm adding up a column of figures it will take me five or six goes to get the same total twice running - and that's with a calculator.  If I were to draw up the documentation for lasting power of attorney for property and financial affairs, and get one detail wrong, it could invalidate the whole process.

In Dad's case, the process would be simple enough; he wouldn't be making any exemptions or involving anyone else, and although he's not short of a few bob he's no millionaire and there's nothing particularly exotic about how he's arranged his savings.  A couple of years ago you can be sure everything would be arranged meticulously.  But the chances of me not getting a little detail wrong are pretty remote.  So I decided to use a solicitor.  Dad's got a solicitor, hasn't he?

Well, he must have had one, to draw up his will for a start (which he will have altered when the grandchildren came alone).  But he can't remember who it was.  Nor can he remember where his will is: he produced an envelope for me to look at, labelled "will", and while it contained other relevant documents such as his birth certificate, the one thing it didn't contain was ... Anyway he's now found an item on his bank account which tells him that he's paying a small monthly amount for document storage in the bank's safe, so I think we now know where the will is.  What we don't know is who drew it up.

I decided to ask June for the details of her solicitor, so we finished up going down town, struggling up the not exactly DDA compliant stairs and spending 45 minutes in an office getting the documentation drawn up.  Sorted.  Expensive, but sorted.

A week later the papers come me for me to sign.  I have to get a witness.  The accompanying notes say this can be another attorney, someone to be told when the power of attorney is activated, or a certificate provider (i.e. the solicitor).  The first two categories point in my case to the same person, i.e. my son, who is the back-up attorney if anything happens to me while my dad is still alive so that I can't carry out the duties, but also the person who will be notified when the power is registered.  He lives some distance away, as of course does the solicitor, down in Grottsville.  I'm perturbed and ring up the solicitor, who tells me that just because the witness can be any of these individuals that's not to say it can't be anyone else; it can be any independent person.  Well why didn't you say.

Another brick in the wall.  Whenever Dad loses his competence to manage his financial affairs, I get to manage them for him.  Always of course acting in his best interests, as if I'd do anything else;  but as with many other aspects of elderly care, there is always the potential for abuse.

What I really ought to do - what everyone above a certain age ought to do - is sort power of attorney out for myself.   So that if ever I go doolally, which could happen at any moment if I had a stroke, say, there's someone on hand who can make the decisions I am no longer capable of making for myself. The legal eagles advise this, and while I'm tempted to say they would, wouldn't they (more nice juicy fees for doing not a right lot) I think a] they're right and b] other people would have the confidence to draw up the documentation themselves so they needn't be faced with huge solicitors' bills.

I also think c] this is much less of a priority than sorting out my dad's affairs so I can comfortably put this one off, if nothing else ....

Tuesday, 5 April 2011

Custard has dementia too

We've always kept cats.  They aren't much trouble and can look after themselves.  Somehow I don't quite "get" dogs; I think they frightened me when I was little, we never owned one, and even now I feel awkward with them.  They understand the rules of the games they want you to play and I guess doggy people do too, but I'm just not in the know.  I feel I need a translator.

Our first cat lived to be 17, started getting yowly, then walked out of the house one day and never came back.  Now Custard is about the same age and is clearly impaired - sensorily but I think mentally too.  The points of comparison with Dad are quite revealing.

She operates in slow motion.  Every action has to be thought about and broken into component parts.  The days of leaping nimbly to a favourite spot in one elegant movement are long gone.  First you identify the sofa, then you jump, then you dig your claws into the upholstery because you can't jump as high as you once could, then you heave yourself up onto the seat, then you sniff around for your special cushion, only your sense of smell is pretty feeble these days so you might have to yowl for a while and hope someone directs you to where you want to be.

Walking round the house is a challenge because she keeps bumping into things.  It's partly her poor sight but also, we think, she's not construing her surroundings properly.  No, Custard, that's a wall, not a door  we keep telling her.  What do you mean, she doesn't understand?  Well maybe she doesn't, not now.

She doesn't groom herself properly any more.  As she's long-haired, that means her fur congeals into lugs, which we have either to tease apart or cut off: fortunately she's very good-natured and offers no resistance.

She can't always find her way to the food dish; or if she can, she'll start eating, then wander off, realise she's still hungry and yowl because she can't find her way back.

Custard, whom we adopted as a stray from the RSPCA, had obviously been well trained by her original owners.  She was always fastidious, asking to go out if she needed to relieve herself, or if we kept her in with a litter tray, using it properly.  Now we daren't let her out for too long at a stretch because she'll get lost, so it's the litter tray or bust.  But Custard's aim is no longer reliable, and sometimes she forgets to use it altogether.

But: she's not in pain, still likes a cuddle, and has - so far as we can judge - reasonable quality of life.  We hope that nature will take its course, eventually, and spare us any wretched decision about having her put down.

Compare and contrast the dementia patient, whose motor co-ordination is suspect so everything's slowed down, might start to have a meal then wander off and forget they were eating, doesn't look after him/herself properly and whose personal hygeine leaves much to be desired.  You can't tell a formerly clean cat not to pee behind the sofa because ... because she's a cat and wouldn't understand anyway.  But you can't tell a formerly fastidious old man that he's not nice to be next to if he's also got dementia; because he won't realise, or if he does, he won't remember being told.

If a demented cat yowls (a much more penetrating, eerier sound than the normal miaow) it means something: usually - I don't know where I am, I'm bewildered.  In demented human beings, language can take on a life of its own, ceasing to refer to anything the person addressed can connect with.  Words are being used but nothing is communicated.  On balance, if I were going to have dementia, I'd rather be a cat.

Wednesday, 30 March 2011

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.

Saturday, 26 March 2011

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....

Friday, 25 March 2011

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.

Saturday, 12 March 2011

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".

Friday, 11 March 2011

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 ....