Open window, mouldy quiche

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

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

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

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

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

Reality boobs again

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

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

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

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

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

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

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

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

You have to laugh

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

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

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

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

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

But it was still a wonderfully bizarre moment.

The cancer story

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

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

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

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

Singing with pwd's

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

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

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

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

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

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

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

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 ....

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.