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.