I don't believe in "miracles"

Earlier in the week a patient told me the following true story.  A lady called to see the vicar, a friend of hers, who asked her to help him empty a large bookcase.  They grabbed armfuls of books and carried them into the next room but suddenly - disaster.  The bookcase, no longer weighted down by its contents, toppled down on top of the woman.  In trying to brace herself against it she rather spectacularly fractured a wrist, which then needed complex surgery.  She banged her head as well, so the hospital took what they thought was just a precautionary X-ray. 

In fact it showed - nothing to do with the accident - two small tumours of the brain, which at that point were operable.  Surgery was a complete success; but had she not been injured by the falling bookcase, the tumours would have remained undetected until too late.  This was a clear sign of divine providence, in the patient's eyes; God used the relatively minor accident to forestall a much greater calamity.  Was it her reward for helping the vicar?  I said she had been very fortunate, by which he understood me to agree with him.

I didn't, for what I hope are obvious reasons.  For every tale of apparent providence, one can readily quote another hard-luck story where a split second meant the difference between life and death.  I think of the child whose funeral I attended, who chased a football onto to the road and straight into the path of a car.  A providential God would have made sure the driver had time to slam his brakes on, but not on this occasion. Splat.  That there was no question of liability will not, I am sure, have stopped the driver's recurring nightmares.

At least it was instantaneous.  Why am I saying that?  Trying to find some glimmer in the darkness maybe, but sometimes there isn't any.  People can die for stupid reasons and "too early", like we think we've the right to our threescore and ten plus a few more for good conduct, but the reality is: stuff happens.  Chance plays a huge part in how long we live, in how and for what reason we eventually kick the bucket.

How about this for providence: on Christmas Day in 1944 my dad's battalion walked straight into a Japanese ambush.  No-one survived.  Dad wasn't there, he was in a hospital in India, recovering from dysentery.  If he'd been a well man ... well, for a start, I wouldn't be here.  I bet my mum thanked the Lord for dysentery many a time.  And then there was the little girl - I met her as an old lady - who stayed off school one day during WWII with an upset stomach.  She'd been scrimping apples and eating them before they were ripe.  All her schoolfriends turned up as usual, and then an American transporter plane landed on their classroom, having overshot the runway at the nearby airbase.  So she survived not because she'd been helping the vicar, but because she'd been naughty, and had to live with that knowledge - as well as the loss of most of her age cohort - for the rest of her days.  How providential is that?

My dad has dementia, partly because he's lived long enough to contract it. His lifestyle has been a healthy one and he has earned his reward.  I'm not going to pray for the disease to be reversed because I know that doesn't happen.  It's going to get worse.  We'll see what I might be praying for as he progresses, but for now it's that he gets the best and most appropriate care package that can be put in place, so ensure his safety, dignity and quality of life for as long as he is capable of enjoying it.  That doesn't seem an unreasonable wish.  I'm not asking for a miracle because the sense in which I believe in miracles at all is more specialised and not for this post.  I categorically do not believe in a God who supernaturally intervenes in our affairs.  All the evidence is against it.  Mum did believe, and at the end that faith let her down; God did not prevent her suffering. 

At least Dad's in no physical pain, which many old people are, and one might call that providential - though only in a figurative sense. 

Coming to the drummer's rescue

Let's say the project is called Partial Recall.  It isn't of course, that would be cruel; but if I told you its real name it would be traceable on Google.

Anyhow, it's one of Fantastic Fred's brainchildren and has been an outstanding success.  On the last Friday of every month a group of people with dementia and their carers turn up for a couple of hours to be waited on in a makeshift cafe environment.  They get tea, coffee, thoroughly evil cream cakes and nibbles, a chance to socialise, share stories, pick up information: and entertainment.  A small group of us, including me and one regular service user plus carer, as well as healthcare professionals, plan the programme and make sure there are enough helpers to see that things run smoothly.  I'm usually the MC, having a loud voice and no sense of shame.  A good time is had by nearly all and we get steady throughput of customers, whom we have to let go as they move from moderate to severe dementia and into care homes.

Entertainment has ranged from crooners to bellringers, magicians to monologue reciters, and if anyone backs out there's always me as backstop, singing at the keyboard.  Today's entertainer was a guy whose thing is African drums and it sounded like a good idea to bring him along to Partial Recall so that customers could have a merry bash along together.

Nice chap, lots of big drums.  He told us a little about them and got us tapping out some rhythms, joining him, repeating after him, echoing him.  Then he started to look nonplussed; what happens next, I wondered.  He didn't seem too sure, hadn't worked with a dementia group before.  I said you drum, I'll sing, and next thing I new I was making up a song about the cafe and what a lovely day it was, while everyone else bashed along.

I didn't want to hog the limelight, really and truly and I didn't, but the drummer guy seemed happy to let me, so from then on we were an impromptu double act.  I got him to fix the tempo, then led a singalong, prancing round the room, getting people engaged.  Old MacDonald had a farm.  If you're happy and you know it. Yellow Submarine, for which I forgot half the words but no-one cared.  Most of them know me, we're all friends at Partial Recall.  Then someone got agitated so we slipped into something quieter.  Eidelweiss, and an unusually sedate rendition of Che Sera Sera.  One or two customers felt inclined to dance at this point and helpers were there to partner them. None of this was planned, but it seemed to rescue an entertaiment session that might otherwise have stalled.  And maybe I'm a rotten show-off.

But I also realised something: I've been in the business of making music with pwd's for a few years now and must have learned a few skills by now.  It is and it is not like "doing a sing-song with the old folks", and there was one time I had a conversation with the professional singer whom I sometimes support on another project which made me reflect on the difference between providing entertainment and therapeutic activity.  It's not so much performing, more enabling people to take pleasure in their own response to music and sometimes to join in.  But even when I find that I'm enjoying myself a little too much, the fact is I am at so ease with groups like this that I've forgotten how other entertainers might find them daunting and difficult to programme for.  To such people I'd say this: projects like Partial Recall draw people together who expect to enjoy whatever is provided for them.  It's not that they are "easy to please" in the sense that quality doesn't matter, but that they are predisposed to like you and will be immensely appreciative if they know you've been to some trouble on their behalf.  Pwd's may not get out much, but this is one environment to which carers can bring them knowing that their loved ones will be safe and their behaviour understood.

At least I resisted the temptation, in thanking our entertainer for coming and doing his best, to ask our customers what you call a man who hangs out with musicians.  The answer of course is: a drummer.  So unfair.

Thinking about a home

Be kind to your children, runs the old advice; because one day it'll be they who choose your care home.  You never think it will apply to you, either way round.

Dad lives in a small two-bedroomed semi, which in general he's looked after well.  There used to be a garden, which at one stage became too much for him, so he had it paved over, back and front, every last square inch of it.  He might have left a raised bed or two around the edge but my Dad has never done things by halves: if he was going to have the garden paved, that meant the whole garden.  My wife calls it a car park.  He tried brightening it up with a few tubs and troughs but he's never been a gardener so that idea fell by the wayside a long time ago.  I don't know if this makes it more or less appealing to potential buyers ... but I'm runing ahead of myself here.

He might be able to manage at home, with a good care package, in the medium term, but ultimately he won't be safe.  He'll wander off, leave the gas on, something disastrous, he'll need watching round the clock.  What with waiting lists and all, this is the time to start looking at options.

I'm the only child and the main beneficiary of Dad's will.  I don't know what he's worth but it's my inheritance and I know he would want to safeguard it.  In fact, I'm guessing about fifteen years ago, he split the ownership of the property into two halves, one in his name, one in Mum's.  The half belonging to whoever died first would be made over to a trust which, in the event of the house being sold, would then pass to me; which would guarantee that, if nothing else, I would inherit half its value, and no care home could demand it to help with fees.  They could have Dad's half, but not mine.  I need to check if this still holds.  Famous Eccles has warned me that it may not be, some new rules have come in which challenge the legality of such arrangements.  You certainly can't create them now.

Mind, I've had a quick look at the care homes that might suit my dad and it appears that some of them offer units which can be bought either outright or occupied on a part-buy, part-rent arrangement.  The unit is then an investment which ultimately can be sold on and might even appreciate in value over the years. 

Homes do vary, across a wide range of variables: size, intensity of provision, range of activities, quality of care and something else - oh yes, cost, that was it.  I don't at this precise moment know the answers to some pretty basic questions, such as: is it first come first served, or do homes give priority to people with identified needs, in my dad's case dementia?  How can I find out which of the homes that might be suitable has the shortest waiting list?

At present, I'm thinking it would be better for Dad if he stayed in his home town, the only one he knows.  Continuity is so important in dementia care; patients get quite unsettled by changes in their environment.  But a move is a move, whether it's a couple of miles from home or two and a half hours' drive; so yes, I am wondering whether it might be an idea to broach the question of him moving to my neck of the woods.   I'd be able to visit him much more often and make sure that his care was everything it should be: one hears the horror stories and I'll be damned if any are going to have a starring role for him.  So at this time nothing is ruled out or in, but I need to study the possibilities and get plenty of advice.  Fortunately I'm in some good networks and know who to ask.  Unfortunately, they're focussed on the area I work in, not where my dad lives.

The lady who comes to clean

At present, Dad doesn't have anything resembling a care plan.  That will obviously change over the next few weeks, but one little bit of support that is in place, has been for some years now, is his cleaning lady, who shall be called Zoe.  Originally employed by a firm that messed her about rather, Zoe started working for herself a while back and gives Dad an hour a week.  It was apparent that she hoovers, but I rang her up to see if she did anything else, and to discuss what she'd observed.

Quite a lot, of course.  In fact, atrocious though the state of the house is, she normally finds it worse when she calls.  In the little time she has she's tidied up some of his heaps, done bits of washing up and generally made it possible to walk from one room to another without tripping over some discarded bit of junk.  "I tell him off a lot", she confided, almost apologising.  You tell him off as much as you like, I replied; the trouble is, he won't remember.

Zoe won't have been to see Dad over the Christmas holiday period, which was why the house was in particular disarray at that time.  To be honest, I'm glad she hadn't been, because her absence and the resulting chaos let me know exactly what I was dealing with.  Her cleaning and tidying up had been serving to mask the extent of Dad's decline, which others might have spotted but for Zoe's work.  As a self-employed cleaner she had no supervisor with whom she might have thought it fit to share her concerns.

I told her Dad's diagnosis.  She was sympathetic, but also a little surprised, which in its turn surprised me, not least because one of her other clients has dementia too.  Didn't she recognise what was happening?

Well, there is observing, and then there is interpreting.  Zoe's not stupid and can use her eyes.  On the other hand she's not medically qualified, which means she - like a good many other folk - doesn't have the competence to draw from what she has observed the conclusion that would be obvious if she'd had training and experience in dementia  In the absence of that, I guess one would fight shy of sticking the label on a client about whom all she knows is that he's old, and not coping as well as he used to.  Which I guess applies to the population at large: all the signs of dementia might be staring you in the face, but you don't know what it is.  And the word, nay the condition, is scary so you don't use it if you don't have to.  "That Dennis, you know, he gets ever so muddled these days."

How long has this been going on?

I might have seen it coming, but should I have seen it coming sooner?

I've already mentioned the "Harold got married in Belgium" incident.  Around the same time there were others pointing to the same conclusion.  Such as when Dad turned to my sister in law, let's call her June, who's been taking him on his weekly supermarket trip for a while now, and said "of course, you never knew my wife, did you?"

What?  I got married in 1972 and June's been part of the family ever since.  I'm not saying she and my mum would see each other every week, but quite a few times each year and certainly at Christmas.  Mum died in 2003 and June came to the funeral.  Major alarm bells ringing here.

Then, in early December after most of England had sithered to a standstill under one of the heaviest pre-Christmas snowfalls for decades, I rang Dad to see if he was OK and had managed to get to the supermarket.  Yes, he said, I went on Friday.

It was Friday.

I corrected him.  "You mean yesterday?  Yesterday was Thursday."

No, Dad "corrected" me, today's Saturday.  There's a coffee morning at church so it must be.

He was right about that: there was indeed a coffee morning at church and since church coffee mornings are ALWAYS on a Saturday, that was the day it had to be.  Of course, just this once they'd brought it forward but that was "new information" to Dad which, as I now realise, he can't process.  So it was Saturday.

He proved it to me by fetching a newspaper.  He knew today's hadn't come yet (he takes the local evening Telegraph) so this would be yesterday's.  Only that was Thursday's, obviously, so Dad drew the obvious conclusion.  The paper had got its date wrong.  We went round in circles for quite some time getting nowhere.  I told him to put the TV news on at the "top of the hour" and check the day, then I'd ring him back.

No sooner had I put the phone down than Dad rang June, complaining that I'd tried to persuade him it was Friday.  But Dennis, it is Friday, said June and that shocked him.  He must at that moment realised something was wrong with his computation processes.

By the time I rang him back he'd got over being perplexed and all was easily explained.  It was all to do with the change of arrangements for the coffee morning, an easy mistake to make.  Well maybe it was, Dad, but how do you explain your insistence that yesterday's paper had got the date wrong?  Why didn't you believe me?

As Famous Eccles, with whom I share an office, would later point out, it's Dad's lack of embarrassment that's so revealing.  We all get our days mixed up from time to time, you know I could have sworn it was Wednesday.  But this was different, not only in the way Dad held out against printed evidence that he was mistaken, but in his later brushing it aside as just another human slip.

These were clear signs, but it's impossible not to look back and wonder if there were others that one missed.  Like for instance his decision - this must be two years ago now - to replace the lounge curtains, which weren't that old and looked fine.  The sense that - OK, all old people like to reminisce - he felt safer and more comfortable talking about India in 1946 than the here and now.  Telling me news about people I've never heard of, then asking me if I'd heard of so and so, when I've known them for years.  None of this seemed any more than typical old man's forgettery at the time, but in the light of his diagnosis, one has to wonder.

Then there was the time, last summer I think, when he told me about his winning lottery numbers.  According to him, he and Mum were on holiday in Switzerland on the day of the first ever draw.  It was televised and they watched it in their hotel room.  And would you believe it, he'd picked all six winning numbers!  Hadn't bought a ticket of course, he'd just done it for a laugh.

Now, in itself, the story is not incredible though totally maddening.  But let's use a little imagination here.  He remembers watching the draw, he remembers picking some numbers for a laugh and wondering what it would be like to win an instant fortune.  But now his memory's malfunctioning, another element has crept into the storyline: the numbers he picked for a laugh were the ones that rolled out on the night.  How likely is that?  Well, a damn sight more likely than that he actually did get them all right.  Especially as within a few months he would be "remembering" that Harold got married in Belgium.

D'you when I think it all started and Dad at that point actually realised?  When, out of the blue in October 2009 he announced that he wanted to move out of his house into residential care.  Social Services came round, assessed him and pronounced that he didn't qualify for any support, he was "too well".  They were very thorough and I couldn't fault their conclusions.  I could immediately call to mind any number of old people far more infirm and disabled than him; but maybe there was prescience in his thinking.  He knew that he was starting, very gradually, to fall apart and would need more help to get him through his residue of days.  Now he's fallen apart much more, the need is as obvious to everyone else as it no longer is to him; but at least he accepts, for reasons he's not concerned to ask, that people are going to some lengths to assess all aspects of his health and social needs. 

I think I would have seen it coming earlier if I'd lived in the same town and been able to visit regularly; given that I don't and haven't, I'm not going to reproach myself for the penny's reluctance to drop.  Plus there's observing that things aren't quite right and being able to see it through the right lens.  Which brings me to the subject of his cleaner - next post.

Telling the minister

Church has always been a big part of Dad's life.  Like a lot of men of his generation he finds it very difficult to talk about his faith, but it's helped to make him who he is, and I mean that mostly in a good way.  He's a decent, honest, clean-living and kind-hearted man; if he's also a bit of a Phillistine and kind of Puritanical, though not in a kill-joy sense, maybe that's partly down to church but also to the fact that he's only ever lived in the one town and is neither widely travelled nor widely read.  He'll complain loudly enough if he has a grievance, or if he think someone else is getting a raw deal, but there's not a malicious bone in his body.

These days he gets a lift to morning service.  The time when he could walk to his church, about a mile away, is long gone; he has an electric disability scooter but reckons there are some dodgy pavements along the way and I can well believe it.

After he had the diagnosis I thought it was time to put his fellow worshippers in the picture so I rang the minister.  She has several churches to look after of which Dad's isn't the largest, so she doesn't know him well; but promised to have a discreet word with a few of his friends.

Next day she rang me back.  This was fascinating.  Her mention of dementia to those who've known Dad over the years opened the floodgates of insight: Oh so that's what's been going on, is it?  And this was from people who hadn't seen the inside of his house, which is the dead giveaway, but had only his public behaviour to go on - and when I've seen him in public I've seen little to suggest there's anything amiss.

But to his old friends, the little signs were there and now made sense.  Like the particular difficulty he has in getting into a car: it's not so much he's stiff and takes his time to bend under the top of the door cavity, but a sense that he doesn't know where the top of his head is and clonks himself on the frame more often than not.  Like chuntering on, which he's done for years, getting his sentences in a knot, but now even more so; repeating himself, telling people things he should have realised they would already know, and looking blank when given new information, his face betraying all too plainly that he hasn't grasped it.

The minister made an interesting comment on that.  Dementia sufferers, she said, can have a relaxed expression that can make them look younger - because they no longer have the capacity to get stressed about things.  So if my dad's house is a tip, it's not his problem.  He doesn't realise it's anybody's problem.  I thought this was quite shrewd, although I'd want to say that sometimes the exact opposite may be true, depending on the pwd - person with dementia, I hereby adopt this abbreviation (following pwa, person with AIDS).  They can get very worked up about certain problems, real or imaginary ("when's Susan going to come?") and will not be placated now matter how many times you tell them it's fine: Susan has already been/will be coming soon/lives in New Zeland now/died in 1986 or whatever.

I hope I'm spared that one.  But then I'd hope that all carers might be spared that one and some have to put up with it, so why should I be exempt?  Who knows what I might be in for?  I know better than to expect God to give me an special dispensation just because I've been on the side of the angels all these years: that's exactly the mistake Mum made, thinking God would look after her because she'd been such a good girl (and she had too, a real saint) and then letting her have a couple of strokes.  She never got over the feeling of being betrayed by the Man Upstairs.

What I do know is that Dad's church will look out for him as best they can.  It's an elderly congregation as so many are these days so there are limits to what they can do, but at least they know what they're dealing with, they love him and have known him long enough to be able to recognise when something he says or does just "isn't Dennis".  That sort of support, which they might not think amounts to much, is beyond price for me, given that I live so far away.

Christianity at its best is like this: it's not about believing stupid things or starting wars with infidels,  It's about being a pastoral community that supports its members, without disdaining them if they start to lose the plot.  Is that so contemptible, Professor Dawkins?

The chiropodist's tale

When Dad went for his long assessment at the outpatient clinic, Bad Sight of the Day was his feet.  Take your socks off, said the physio and off they came, very laboriously.

Dad's feet looked as if they'd been in solitary confinement.  Flaky, discoloured and obviously neglected.  The physio began to poke around between his toes and little gobbets of gunk started dropping out.  They appeared, she said, to be some kind of fungal growth, mixed up with bits of sock.  Obvious conclusion; while Dad may get his feet wet in the shower, he doesn't actually wash them.  When we saw how long it took Dad to put his socks back on, especially on his left foot - it's hard for him to bend that side, over the place where he cracked his hip a few years ago - the thought obviously occurred to me: maybe he doesn't change his socks all that often.  Sleeps in them, who knows?

If I hadn't washed my feet in weeks and suddenly found myself having to show them to a nurse, I hope I'd have the decency to be embarrassed and make some sort of excuse.  Not my Dad.  They were his feet and that's what they look like.   Nothing to be said, it's not as if they hurt or anything.

Does he actually have a chiropodist, asked the nurse, with good reason: though as with many old people his nails have become very thick and I doubt, what with his difficulty in bending, that he'd be able to cut them properly himself.   Oh yes, said Dad, she comes every couple of months.  Perhaps, said the nurse to me, I would like to contact her and have a little word?  (meaning: ask her what the hell's been going on).

Turned out that the chiropodist was due to call in a fortnight's time and - not surprisingly - she'd noticed Dad's decline over the last few visits.  Not to mention the state of the house.  She cleaned his feet every time and told him to look after them, but knew damn well he wouldn't, and confirmed my suspicions as to the frequency of his sock changing.

His state of mind wasn't her problem.  She was there to look after his feet, not suggest he might tidy the place up a bit.  I suppose it's no different from me as a clergyman going to do a funeral visit, finding different branches of the family at daggers drawn and wanting me to make sure I didn't mention the first wife or make any reference to Wakefield.  As in prison.  I'm there to plan an act of remembrance, not to do family counselling or hear confession.  There's a time and a place; and if you're a chiropodist, your client's mind is someone else's problem.

Dad's MMSE, January 2011

I'd heard of mini mental state examinations, or MMSE's, through work.  They're designed to test memory and cognition, scored out of 30 with anything less than 26 indicating possible problems. Anyone with unimpaired faculties would sail through it: of course I know it's Tuesday, that100 - 7 = 93, and that the prime minister is the devil incarnate, I mean David Cameron, sorry, slip of the tongue. 

It was interesting to watch my own father take his MMSE, and disturbing to observe where he cocked up.  The mental arithmetic was fine, but then he has often worked with figures so one would expect no less.  He fought in World War II so obviously he knew when it started ... except he didn't, tried to guess and got it wrong.  That shocked me, as did his spectacular failure to remember, for just a few minutes, five words that the therapist repeated to him: Red, Velvet, Church, Daisy and Sesquipedalian (all right, I can't remember the fifth word now but it's a month ago, give me a break).  For each of the five the therapist gave him a  hint - "it's a sort of building" - and three possibilities to choose from - Dennis, was it church, hospital or school? and each time he guessed  wrong.  To be honest, this alarmed me because until that moment I would not have said that his short term memory was as impaired as some of his other cognitive functions.

This was the weirdest one: Dad was asked to draw a clock face and put the numbers on.  Easy peasy.  Then draw on the hands, showing ten past eleven.  Dad couldn't work out how to draw the hands at all.  He just did a bit of scribble at on edge of the circle, not even close to the 11 or the 2 where the hands should have been.

Dad was given a score of 21, which he accepted with the kind of sanguine resignation I've come to expect from him.  Not whoops, that wasn't very good but OK, 26 is a pass and I didn't make it, whatever. Now, I know that MMSE tests are not and do not claim to be a precise indicator of dementia and its extent; I've also learned since that he's likely to be tested again, in case they caught him on a bad day or there were some other reasons for his confusion on the first test which might have cleared up by the next occasion.  But for what it's worth 21 is a score that places Dad towards the bottom end of "mild" dementia and not far above the top of "moderate".  So the question that's ringing in my ears now is: just how long has this been going on and why didn't I spot it before?  It's not as if I was in denial, I was on the lookout for indicators.  Truth is I just cannot, from 130 miles away, keep the kind of regular contact with him that would have enabled me to spot the warning signs.  But haven't other people, who do see him more regularly, noticed his mental deterioration?  This is an interesting one, more posts to come, but the simple answer is: noticing signs of decline is one thing, interpreting them as dementia something else entirely.

As I wrote to the GP

This is an extract from a letter I wrote to Dad's GP shortly after Christmas, and post for the record.  It speaks for itself, although re-reading it now throws up other questions which I want to reflect on further:

The father I’ve always known is tidy and methodical and until about a year ago that was still true.  Over the last 12 months there’s been a marked decline in his housekeeping skills.  There’s untidiness as in leaving piles of papers on the floor - I do that! - and there’s chaos.  A while ago Dad started to have a look through his financial affairs and spread papers over the dining room table. Fine, except that I observed this on one visit and on my next, some weeks later, those papers were still there – only they’d also spread onto chairs and the floor.  There was another heap on the bottom of the stairs and another one again in the lounge.  He sleeps in the single bedroom at the back of the house; that room was tidy, but on the double bed in the main bedroom were piles of clothes at various stages on the laundry cycle – needing to be washed, washed but not ironed, ironed and waiting to be put away.  In the kitchen, bits of DIY and cleaning products were mixed up with food packets and drink bottles.

At Christmas this situation was visibly worse, so that on the double bed were not only piles of clothes but papers strewn on top of the clothes.  In the dining room the ironing board was set up, not for ironing but as a work surface: on it were lying a ring binder, a light bulb, some opened mail, a couple of Christmas cards, as well as some ironed handkerchiefs.  A number of plastic bags littered the floor.  Two of the chairs in the lounge were strewn with papers, sheet music, videos, Christmas cards, newspapers, and packs of some denture care product.  There was another pile of odds and ends at the foot of the stairs.  My father does not live like this.  It’s as if he starts a job, wanders off, forgets what he’s been doing, starts on something else and never returns to the original task or cleans up after himself.

On my arrival on Boxing Day I noticed a box of eggs on the stairs.  They must have been there for at least three days and it didn’t seem to strike Dad that they belonged in the fridge.  I opened the fridge only to find another box of eggs, a full half dozen, marked “best before Nov 26”.  There was also a pack of sliced ham on top of the freezer, completely thawed, with an August sell-by: Dad had taken it out and forgotten about it, ditto a pack of sandwiches, visibly mouldy.  I threw both in the dustbin, wondering what he might have done if I hadn’t called.

Washing up was piled in the sink, the water stone cold, but other dirty pots hadn’t made it that far and were still standing on the work top, among empty biscuit packets and other bits of packaging which he could have binned in a moment.  One cereal bowl had its food residue caked on hard and must have escaped washing up for several days. 

I’d bought him an M & S hamper for Christmas, which he’d opened and begun to sample.  It included a small pudding, of which he’d eaten half and left the rest; the little bowl it had come in stood on the work top with a teaspoon stuck in it.  There was a packet of biscuits which he’d opened but hadn’t transferred the contents to a tin, a cake in a cardboard packet which he’d undone and just left open, and a few other tins and jars from the hamper standing randomly on the work top, next to some sellotape and scissors from where he’d been wrapping small presents.  There were more Christmas cards on top of the microwave, a pack he’d opened and begun to use.  Also in the kitchen was a heap of laundry, pyjamas and a dressing gown, a roll of insulated tape, some Tippex ... you get the picture.

Next day the kitchen was pretty much as it had been 24 hours before, including the half-eaten Christmas pud with the spoon still stuck in it.  Dad had run some water into the sink and put his used crocks in, but hadn’t done any washing up.  He’d made no attempt to put the other things from the hamper away or cover up the cake and biscuits. 

Not only is he not coping with his chores, he doesn’t notice that he’s not coping.

I dreamt I woke up

I had one of those dreams within a dream last night.  Inspired by watching "Inception" perhaps, who knows - a sci-fi thriller more I found more ingenious than compelling, that played with the idea of psychic operatives who can break into your dreams and steal your secrets.  Anyhow, there I was on a concert stage, about to direct some musical production from the piano stool.  (As if a show's musical director would also be on stage??? Whatever, this was a dream, OK?) I might have written this musical myself, but I certainly knew the number - except when it came to the vital moment, I didn't.  I hadn't been practising because I was so familiar with it, but the familiarity had suddenly vanished and I was unable to continue.  The show couldn't go on, couldn't even get started, and I fled into hiding, humiliated.  What was that about, the fear of "drying" in front of an audience?  But I don't get stage fright now, haven't since my teens.  If I forget my lines I'll ad lib or turn it into a joke, like I did one night during the last run of the village panto.

Anyway, I then woke up, except I was still dreaming; and I felt myself reflecting, perhaps saying to someone else, that the dream had really been about my fears of dementia, losing the plot, just as my Dad is doing.  Of course I knew the musical, I just needed to run through it on the piano and I'd be fine ... and then I really did wake up, and realised that there is no musical.  Or at least, not one I would be involved in like that.  But the interpretation of the first dream within the second still makes sense: dementia does frighten me, and here's one of the reasons.  No-one has ever been demented and then come back to tell you what it was like; so there's a sense in which although you may be able to connect with the sufferer, you can't empathise.  You can't feel their confusion and you don't know if all confusion is the same or - as observation suggests - different in every case.  The patient is lost but can't be given a map, only guided on his way by someone who knows where he is.

Funeral of a friend

Beanpole Brian finally popped his size 14's. He'd mapped out various projects for his retirement, instead of which he spent three years in a losing battle with cancer.  Bummer.  It was a good death though, at home where he wanted to be thanks to support from the Macmillan nurses, and with family at the bedside.  The funeral was not one I could dream of missing.  Some of the time my mind was runing on to another funeral I shall have to attend; not for a while, but in very different circumtances.

Brian and I had been ecumenical colleagues for about two weeks, then he started being rude to me, I was rude back and thus our friendship was sealed.  He was a devout, thoughtful servant of the Church and also a disarming twerp, who loved dogs, birds and children, completely at ease with himself and thus able to put others at ease also.  The sort of guy you could not imagine having an enemy in the world, although one would have to make an exception for the Bishop of Asterisk, who really got up Brian's nose, along with most of the noses in his diocese. 

You can "fight" cancer because, by and large, you don't lose your faculties.  You can make decisions about your treatment, brace yourself for the side effects of the chemo, struggle with the pain and determine to keep your composure at least in front of visitors.  Brian, apparently, lost it once during his final months, saying "oh eff, this is it" when given the news of a particular setback, and Brian never effed.  But that was all.  His little grand-daughters visited him in hospital not far from the end, and were enchanted by "Pa's magic bed", which went up and down all by itself!  (Brian had hidden the controls under the bedclothes and pretended to them that he just had to say abracadabra).

Brian died at 69, 18 years younger than my dad is now and his condition is merely incurable, not terminal.  But he won't be having any brave struggles with it.  You can't fight dementia as such, it holds all the cards.  You can of course be helped to find contentment within the condition - that's what good occupational therapy should be about - and take steps to check its advance.  But in the end the disease robs you of all awareness and ability to respond, you sink back into the blur of confusion.  How can you fight it when you no longer have a coherent sense of who you are or what's going on?  Dad won't be playing daft games with his great-grandchildren, should there be any, or even cracking his awful puns.  We'll be lucky if he can say anything or can remember who we are.  Horrible as cancer is, dementia is in this sense worse: it never puts you on your mettle, it takes your mettle away, denies you the chance to be courageous.  What a bloody undignified way to go.

Kohima and Imphal

Go on, Google on them, I'd never heard of these places either.

Among the odd items I was trying to persuade Dad to throw away was a simple engagement diary for 2009.  No, I need that, he said.

To prove its importance he turned to a page of notes at the back.  Most of it was taken up with words he'd copied from the Remembrance Sunday liturgy -They shall not grow old etc, and When you go home, tell them of us and say.  But the words "Kohima" and "Imphal" were written there too, with nothing to explain them.

They are WWII battlefields in north-eastern India, where the Japanese suffered some of their most significant losses and were driven back into Burma.  Dad would know all about that: he was called up in 1942 and sent to Burma the following year.  My guess is that he'd been watching some TV programme which triggered the memory and at that point he wrote down the two words in the old diary.  But that's all he wrote.  it's as though labelling a memory was the same as describing it in full detail, and that to lose the label, or the particular place where the label had been written, was to lose the entire content of the memory itself.  He had to keep the diary in order to hang on to the memory, although the diary contained nothing but the place names.  So I wrote them on a separate piece of paper for him, after which he was quite content for me to throw the diary away.  Weird.

The New TV

Dad's old TV had conked out.  It always was too big for the room; he'd bought it after Mum's eyesight deteriorated after her second stroke and she needed a large screen.  So I went with him to buy a new one.  It was an entirely rational process: he knew what size he wanted, which shop he was going to get it from; it took him a few moments to choose and arrange delivery.  Nothing in his demeanour in the shop suggested any confusion.  The assistant would not have known he'd been dealing with a dementia sufferer.

It was when I rang up later to make sure it had been delivered that I realised there was a problem.  "That blasted delivery man", Dad complained - "blasted" being the strongest expletive in his vocabulary - "dashed in and out and didn't explain anything.  The picture's marvellous on some channels, on others I can't get a picture at all.  And he said I needed a new part which I'd have to pay for."

I had visions of Dad stomping into the shop and grumbling at customer services about this useless bit of equipment they'd flogged him.  But the missing part that had to be paid for didn't make sense.  Eventually it turned out that he'd thrown away the remote control for his DVD combi player, along with the handset for the old TV, and (obviously) couldn't get the machine to work without it.  The delivery man must have pointed this out, told Dad he would need to buy a new remote; Dad interpreted this to mean that there was part of the TV itself that hadn't been supplied, and for which he ould have to pay extra.

I checked the TV for myself: it works fine, though of course the Freeview channels include some radio stations where all you see on the screen is a logo, and my guess is that these were the ones on which Dad was complaining he couldn't get a picture.

The pace of technological advance can be quite daunting for any old person, but Dad is now losing his grip on fairly basic pieces of information, such as the difference between CD's and DVD's,  Dad, I said calmly, drawing on the kind of patience of which carers need vast reserves in dealing with dementia: how deep are mine, I wonder? - one is just sound, the other is sound and video.  I could not get him to acknowledge that there ever had been a remote for the DVD combi, or to understand why he could not use the TV remote to play videos.  In Dad's mind, the delivery man hadn't done his job properly and was trying to rip him off.  It's not so far from the scenario that plays itself out a dozen times every day on every dementia ward in the world: patient throws something away, or puts it in a safe place, then can't find it and accuses some poor nurse of thieving.

Not challenging, just can't see properly

Les was ... well, it struck me as quite aggressive at our last meeting.  Except his carer's body language was saying: relax, he's a pussycat, same as he always is.

Les has had Alzheimer's for a year or two now.  I've seen him rise to various challenges within the limitations of his condition; he's always been creative and now his inhibitions have gone, so he creates more extravagently, sings louder, paints more vividly.  But it seemed to me that the frustrations of shrinking vocabulary, of not being able to make himself clear were getting to him and making him want to use not so much gestures as actual contact.  And Les is not a guy you'd pick a fight with, should he ever be in a fighty mood.  He was standing quite close, tapping me, poking, feeling where I was.

Pat, his carer, said it's to do with deteriorating vision.  Perhaps she meant visual-spatial awareness, losing the sense of how close or far away things are.  Les knew I was within his field of vision, but could no longer gauge the distance between us with his eyes alone, so was using his hands to help.  Perhaps it's like those optical illusion rooms which play a trick on your habits of perception so that you mis-judge the size of objects: have a look at this for instance.  Les's dementia has played a similar trick on his cognition, compromising his abilty to judge distance in ordinary contexts.

Pat reassured me that I didn't need to back off, but I thought how easy it would have been to misinterpret his behaviour as "challenging".  Her complaint was how often people talk past the person with dementia to the carer, treating him/her as "normal" and the dementia sufferer as wholly incapacitated.  The "does he take sugar" syndrome.  Les is still a person, she protested, and of course he is: I hope I always respect the patients I work with, however severe their illness has become.  The other side of that coin is that Les cannot always answer for himself, not on every issue at least, and needs Pat to interpret.  I know that I shall be talking past my dad when we meet with his social services assessor in a couple of weeks, and I'm never going to forget that he's a person who needs to be treated with more respect than he is now able to give himself, bless.  But he's not going to tell them that his standards of hygeine have slipped is he?  Not because he's too ashamed to admit it, but because he doesn't altogether realise that they have.

A Douglas Adams insight

Douglas Adams' Hitch-hiker series ends with "Mostly Harmless", which gets mixed reviews; for me it's a triumph, far superior to the very light-weight volume 4 "So Long and Thanks for All the Fish".

It begins with a demented computer on board a huge spaceship, which one day wakes up to the fact that something isn't functioning properly, but doesn't have the wherewithal to put itself right.  "At every level, vital instructions were missing, and the instructions about what to do in the event of discovering that vital instructions were missing, were aso missing."  It sends robots to replace the central mission module, only en route the component falls out of the ship and out into deep space.  Because "a meteorite had knocked a large hole in the ship.  The ship had not previously detected this because the meteorite had neatly knocked out that part of the ship's processing equipment which was supposed to detect if the ship had been hit by a meteorite."

Adams continues "The first thing to do was to try to seal up the hole.  This turned out to be impossible, because the ship's sensors couldn't see that there was a hole and the supervisors which should have said that the sensors weren't working properly weren't working properly and kept saying that the sensors were fine."

This of course will ring bells with anyone who has ever shouted himself hoarse at some damn fool of a computer which won't perform the task it has been set, while telling you all the time that it is performing it.  "Windows is printing your document".  Yeah, right.  But it also rings bells in a dementia context.  Sensors stop working but at the same time, the supervisors which should tell you that they're not working also stop working.  The patient talks rubbish but doesn't know it's rubbish.  Personal care starts to slip but who cares about personal care?

If you try to point out these things you may hit various reactions: incomprehension perhaps, or aggression of the kind you meet in paranod patients - how dare you suggest I'm paranoid?  You see, you're in the plot to keep me locked up on this ward as well when there's nothing the matter with me!  But there's a third response: meek, almost childlike, compliance.  OK, so the house is a tip.  You clean it up then - and mercifully that's how my Dad is at present.  He may, or more likely may not, realise that all is far from well, but if I want to put it right he won't stand in my way.  He's lost his instruction manual, which would tell him, for example, that you don't leave yoghurt pots on the lounge floor.  But he's also lost the backup command -  in event of losing instruction manual, draw someone else's attention to the problem and see if they can help.  He doesn't see, in the case of yoghurt pots on the lounge floor, that there is a problem.  There's a hole in his capacity through which has fallen the ability to understand that there's a hole in his capacity.  As so often, Adams provides illumination.

A giveaway moment

My dad has a very old friend, who we'll call Harold.  He's as English as toast and marmalade, as was his late wife, and all their respective families; for the first nine years of my life he was our next door neighbour and we still keep in touch.  Now in his 90's, he's physically much frailer than Dad but possessed of a full set of marbles.

Last time I saw Harold he had some old photograph albums out.  He's always been pretty handy with a camera and did his own processing for years.  The pictures he was reminiscing over were of Antwerp during World War II, where he served not as a soldier but in some technical support capacity, and they were typically striking compositions.

I reported all this to Dad, who said "well of course, Harold got married in Belgium, you know".

I didn't need to check my facts; the statement made no sense.  Why should good old English Harold have dragged off equally good old English Elsie to Belgium for their nuptuals?  How on earth would he have sorted out the legalities for a start?  I pressed and pressed, but Dad wouldn't budge.

We can all get daft ideas into our heads sometimes: let's say I hear the word pancetta and am convinced it refers to a variety of cheese.  I later discover that it's a kind of belly pork and realise that I was under a misapprehension.  Silly me, I might say, don't know how I could have got that wrong.  But I would know that I had got it wrong and admit the mistake.  Dad just couldn't see how impossible his idea about Harold getting married in Belgium was; and even on a later occasion, when I reminded him of it, he tried to make out that it might have happened, he just wasn't sure.

In fact there's no way, and the clue to this being more than normal forgettery in an old man is in the complete absence of a "silly me" reaction on having it pointed out to him.  Dementia is like that: you say daft things but don't know that they're daft.  There would be other incidents in the second half of 2010 that told me what I was dealing with, but this was the first that really rang alarm bells.

The Casablanca Connection

You must remember this… ah, the ambiguity of the serviceable lyric.  I don’t suggest for a moment that it's in Sondheim’s league, but it’s a good fit for its melody and seems to mean something.  But what am I being besought to remember and why does it matter?  A kiss is still a kiss – was I on the point of suggesting that actually, in these brutal times, a kiss has become a dislocated hip?  A sigh is just a sigh, maybe, but much depends on the context.  But what of that initial entreaty: is it – surely you haven’t forgotten, perhaps that particular kiss in 1969 when the Bee Gees’ “World” was spinning away on the radiogram?  I never forget the music – perhaps you just remember the kiss?  Oh come on, darling, you were there!

Or is it a more direct imperative: here is something I command you to retain for easy recall?  You must remember this, or you’re in trouble.  I’m playing a detective in a farce in May, must get learning my lines, and above all the timing on which parts of the outrageous storyline depend.  I mustn’t see the briefcase with all the stolen money in it.  I need to turn away just before it briefly pops out of its hidey-hole.  I must remember that.

In “Casablanca” Rick is haunted by memory.  He cannot help remembering the road he didn’t take which is forever coming to mind, making him the cynical survivor that we see in the first few scenes.  There's a certain song that the bar pianist is forbidden to play or it will bring everything back. Then into his gin-joint, out of all the others in all the towns in the world that she might have chosen, walks Ilsa, the woman he once loved and thought would be his for ever, united by that song among other things, so she gets Sam to play it again.  Rick is furious; he remembers being dumped for reasons she couldn’t explain at the time.  But now she can; so that’s kind of all right, because they’ll always have Paris.  Rick will always have his memories to keep him warm and for quite a while it seems he’ll have Ilsa as well; husband Lazlo is a marked man.

At the film’s climax it seems that Rick and Ilsa will fly into the sunset together but no: happy ever afters all around ain’t possible when there’s three in the relationship.  Something has to give and it’s Rick: why?  Because if Ilsa comes with him, her memories will be all wrong: she’ll regret it “maybe not today, maybe not tomorrow, but soon and for the rest of your life.”  So she stays with her husband; while for his happiness Rick embarks on the “beautiful friendship” with Louis, in one of cinema's great exit lines.

Happiness has to do with getting your memories to behave themselves, learning to feed on what sustains, to discard what drains and distresses you.  In mental health work I constantly meet people tormented by toxic memories.  With dementia patients it’s important to do the reminiscence work, find out what they can remember and help them to feel at home in those parts of their mind where they’re safe and don’t fall through the holes into chaos and disorientation.  I can’t tell my father aw, come on, you must remember this: but I will explore with him what he does remember.  While he still can.  

Casablanca has to be one of the most quoted-from films of all time, the memorable sharpness of its script is part of the poignancy that makes it one of the world’s favourites.  C’mon, you can all think of a few lines…. Here’s looking at you kid.  Play it, Sam.  You must remember this.  There are some other blogs with the same name even.

I'm a "carer" now

“Into the Woods”, another Sondheim masterpiece, features a Narrator whose function at first is to hold together the different strands of fairytale from which the show’s plot is woven.  Act 2, famously, focuses on what happens after “happy ever after”.  Things fall apart.  The Giant, killed by Jack as the beanstalk is felled, has an angry widow who has descended to earth and seeks revenge.  In desperation, the surviving members of the cast look for a sacrificial victim to placate her and they “volunteer” the narrator for this role.  It’s to no avail; she won’t be satisfied until she’s taken Jack’s life in return for her husband’s.  But now the story has to find its own way: the narrator is no more.

For my Dad, it’s as if his narrator has died too.  That sense we all have of: here’s another day, what are the tasks that face us, where’s my “to do” list – has now vanished.  Life for him is one thing after another, a task to begin but then be distracted from so it doesn’t get finished, but you don’t remember starting it so you’re not aware it needs to BE finished.  Someone else needs to tell the story for him; and that person, for the time being, will have to be me.

­-o0o-

I live 2½ hours’ drive from Dad.  I’m the only child and there are no other close relatives; nonetheless, with phone calls and weekend visits where I can, I have to make sure his care is in place, talk to his doctors, social services, housing advisers, and so on.  So that makes me – and Akela confirmed this – a “carer”.  I meet the criteria, so it’s official.  Whoo, boundary problems.  I’m a chaplain, not a patient.  I work with patients, I work with staff – as colleagues, that’s OK – and with carers.  But now I am a carer.  I need information, I need support, I need others in my situation to share my feelings with.  D-day has hung a new sign on me and it’s still itching round my neck, it’s not a status I feel I can do justice to at such a distance, but so God help me I’ll do my best.

Whatever that means, but watch this space for some theological reflection on where I am in all this.



The Road You Didn't Take

I believe in God in at least three persons: as well as Father, Son and Holy Spirit, there’s Stephen Sondheim.

High on my list of fairygodmother wishes would be to play the part of Benjamin Stone in Follies .  It's not going to happen, alas, although I don't think I'd disgrace it and I'm not yet too old for it.  Ben is the guy who gets to sing

You're either a poet, or you're a lover
Or you're the famous Benjamin Stone.
You take one road, you try one door,
There isn't time for any more.
One's life consists of either/or.
One has regrets

Which one forgets,
And as the years go on….
The road you didn't take
Hardly comes to mind, does it?
The door you didn't try,
Where could it have led?
The choice you didn't make
Never was defined, was it?
Dreams you didn't dare
Are dead.
Were they ever there?
Who said?
I don't remember, I don't remember at all.
....

You yearn for the women, long for the money,
Envy the famous Benjamin Stone.
You take your road, the decades fly,
The yearnings fade, the longings die.
You learn to bid them all goodbye.
And oh, the peace, the blessed peace...
At last you come to know:
The roads you never take
Go through rocky ground,
Don't they?
The choices that you make
Aren't all that grim.
The worlds you never see
Still will be around,
Won't they!
The Ben I'll never be,
Who remembers him?

It’s a song stuffed with more ironies, more denial, more outright lies even than internal rhymes.  The road you didn’t take hardly comes to mind, does it?  Yes it sodding does, every day of your life, Ben, and don’t you kid yourself.  The yearnings fade, the longings die, you learn to bid them all goodbye – no you don’t learn, they just go and you don’t necessarily want to part with them.  The song is a nightmarish counterweight to “My Way” – regrets, I’ve had a few, but then again too few to mention; this song is about regrets that haunt you, blight you, because of choices that you made that were as grim as the Reaper himself.

I don't remember at all, sings Ben, more in relief than regret.  Dementia, like this song, is at least partly about forgetting.  Much more than that – cognitive impairment, loss of function, growing dependence.  But “memory problems” can be a helpful euphemism.  And I read the lyric – as if I don’t have it by heart, I know the song so well – and find something new in it in the context of Dad’s dementia.  There is, as of now, D-day, a “Dennis he’ll never be”.  There are not only roads he didn’t take but roads he can’t take, they’re closed to him.  They go uphill, to new experiences, new information and that’s a challenge now.  Like his legs, his mind can’t really cope with uphill.  From here on it’s downhill all the way.

No one remembers the Ben who never was, but in Sondheim's ending there is a hint of panic that no-one will remember the Ben who made the choices, who took the roads, that made him who he is today.  If our ability to remember is the glue that holds our personality together, it is being remembered by others that gives us value.  So if no-one remembers us, who are we?  But as long as we are remembered as we were, we are not lost.  Even if we feel lost.

I'd seen it coming

I’d seen it coming for some time.  I've been in the mental healthcare business since 2007, working with, among others, dementia patients.  I recognise the signs, I’ve had training.  Prior to that I’d encountered the condition among my church members, in varying degrees of severity.  I’ve seen them a bit muddled in their homes and completely “away with the fairies” in care homes, and many stages in between.  I supported them and their carers as best I could, on the basis of general pastoral commitment.  I’d no specific knowledge, never thought to read up on it and was never encouraged to do so.

Is “away with the fairies” a demeaning/pejorative term?  Must find out how other people react to the phrase: it’s usually spoken in tones of sympathy. To call someone demented, when they actually are, still sounds harsh – because of the market-place, non-clinical usage of the same word.  We tend to talk to service users about their having “memory problems”, which most dementia sufferers will admit to – part of growing old, innit? – without having to acknowledge that there may be something more serious wrong with them.  And as for “suffering from brain failure”, a phrase which one high profile carer favours, that really does sound rude, despite being completely accurate.  Normally, to be PC, you ask a person if they are comfortable with a certain label being used to describe them – are you OK if I call you bald?  Thin on top?  Slaphead?  No?  What then?  Oh, receding.  Fine.  But you can’t ask someone with severe dementia if they mind being described as away with the fairies.  Because they don’t know that they are.

I digress.

Twelve months ago I’d have said that for an old man on his own, Dad was coping pretty well.  My antennae were twitching away but I picked up no more than the normal forgetfulness, muddle and faffing about that go with getting on in years.  I’ll describe his decline in later posts, but it was obvious by Christmas 2010 that something was seriously amiss, and I started to describe him as “showing signs of dementia” to professional colleagues and people I knew who’d had experience of the disease.

Fantastic Fred reminded me of the other factors that can cause confusion in elderly people: depression and urine infection to name just two.  But I’ve seen the confusion he gets when he has a urine infection, and if he was depressed and I hadn’t picked that up, I’m not sure I should be doing this job.  No, this was a different flavour of confusion.  Fantastic Fred wasn’t wrong, just covering all bases with his usual thoroughness.  Other friends felt I was definitely on the right track.  If it quacks and waddles, I kept saying…. well now I know; it really is a duck.

There is a HUGE difference between knowing something and being told, especially when the something is as momentous as dementia.  I was not prepared for the emotional shock and didn’t achieve much work-wise for the rest of the morning.  Even had a little weep in the car and it’s only music that can make me cry as a rule.  I was playing out various scenarios that might unfold over the next few years and dreading some of them.

I had an urge to let people know.  I told Akela, manager of the elderly ward I was visiting in the afternoon anyway, partly to do some singing with the patients.  She gave me five minutes one-to-one and would have offered more but I felt it was an imposition on her time: but did suggest that she and I, plus Fantastic Fred go out for a drink sometime.  “You do drink, don’t you?  A man of the cloth?”  Thanks for asking, Akela, and yes I do, but I’m still amused by the assumption that clergy are abstemious these days: some are of course, but they tend not to be of the kind who would want to work for the NHS.

I e-mailed Fantastic Fred.  Part of his reply: “I truly believe it is important to know the specific type of dementia as it has implications for treatment and ‘at his age’ doesn’t reflect well on valuing our senior citizens”. Well, I’d have thought it was important too: the differences between Alzheimer’s and vascular dementia are considerable.  I sort of had, and sort of hadn’t, registered the dismissive tone in “at his age” because I was more occupied with absorbing the actual news.  But thanks, FF: I know my dad is in for some years of decline, leading in all probability to death in confusion and that’s not the cheerfullest of prospects; but I know the condition can be managed, can be managed well, and that people with dementia can have a good quality of life – I am partly in the business of helping to see that they do.  How it’s managed partly depends on a knowledge of what we’re dealing with.  So if Dad’s GP hasn’t been able to work it out, let’s hope the Community Mental Health Team can.

Now it begins

8^th February 2011: D day – d for diagnosis.

Dad’s GP rang.  I wanted to discuss some concerns arising from a long general assessment at the hospital which we’d attended together.  Dr S slipped in the “d” word in passing and I picked her up on it. 

“You mentioned dementia”, I said.  “Is that a diagnosis?”

“Yes it is.”

“Is that vascular or Alzheimer’s?”

“I can’t tell, but at his age it makes little difference.”

Dad is 86.  You’ll be learning more about him as we go.

Why This Blog

My father has dementia.  That saddens me of course; it also engrosses and challenges me, personally and professionally.  I intend to follow his progress through this blog, but also as I do to explore related ideas about memory, the meaning of personhood, about getting old and - let's face it - dying. 

There are two other things you need to know at the outset.  First, I'm a mental health chaplain.  I am employed by the NHS but that's as much as I can disclose. I'll be reflecting on my experiences with patients, carers and staff whom I meet in the course of my work, but I'll mention no names or specific locations.  Any names I do use will be made up.  My prime directive is to provide spiritual care, and while the meaning of that phrase is something we continually ponder both as a chaplaincy team and within the wider Trust, which takes it more seriously than many, it's taken on a different aspect now.  I can feel already that the way I do my theology will be challenged as I watch and sometimes accompany Dad on his journey "into that good night".

Second, I'm a musician.  Strictly amateur, but versatile and experienced: I get both my love of music and my aptitude from Dad.  Something I do through my work, and hope I may develop as a specialism, is to encourage older patients to sing.  This leads me to think about why music matters to people, especially when their minds have stopped working properly and their memories are in pieces: but it does, and how.  People with dementia may not be able to speak, but they can sing; or if they can't sing, they can dance, rattle a bit of percussion, or tap their feet.  When you can't get them to respond to music at all, even with encouragement, they really are far gone.

I'll feed in and comment on stories from the media as they crop up, reflect on policy issues, and no doubt sound off against spending constraints "as time goes by"  - that song again.  But enough, let's get started.  It is, as the saying goes, always later than you think.