Death is less bitter punishment than death’s delay….

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At  some moment in the early hours today, my mum slipped off the sofa. She was still there when the carer came in the morning. Finding your client dead must be a daunting aspect of a job that’s already under-paid, under-appreciated, and largely ignored by wider society – unless some shock-horror example of callousness brings it into the sudden glare of publicity, only to fade back as quickly as it emerged when the fierce competition of a European referendum, a celebrity unmasked, or a helicopter crash swamps the headlines once again. And so my heart goes out to that carer, someone who has done her best to make mum’s last couple of years easier.

I’ve charted my mum’s struggle with dementia in a number of posts here. Mostly it’s been a constant, but measured, decline. But suddenly, a couple of weeks before Christmas, mum began to deteriorate sharply. It was, in my brother’s words, as if “the will to keep on seem[ed] to have evaporated.” I’d arranged some time ago to take mum out to dinner on Christmas day, and I wondered long and hard if that was still a good idea. But we went anyway and, as you can see from the photo, I think she enjoyed herself within the limits of her confusion and chronic fatigue.

It turned out to be something of a swan song. By the time we got home she was exhausted, and the rest of the day was very difficult. By the time she went, eventually, to bed she was distraught, anxious, and more confused and desperate than I’d ever seen her before. Ovid was clearly right. Death’s delay is every bit as cruel as death itself.

This isn’t the time to think about how hopelessly inadequate our society’s care for the elderly is. It’s a theme I’ll return to, but not now. For the moment I’m sufficiently employed in trying to make some sense of my pot-pourri of conflicting emotions. Sadness, of course. But also a kind of mixture of guilt and sorrow that mum should die alone, to be found slumped on the floor by a stranger. Anger too, pointless anger, at the dementia that hollowed out my mum’s spirit and left her a tiny fraction of the woman she’d been. Gratitude for that last Christmas together, with all its bitter-sweet contradictions.

And further back, admiration for her fortitude in the almost 20 years that she kept going after my dad’s death. No liberated feminist my mum; her life was in her own lights a duty of support to my dad’s vocation, and losing him deprived her, too, of much her sense of purpose.

But this isn’t about me, and my confused emotions. It’s about her life. The love and support she’s always given me and my brothers, even if we didn’t always deserve it. How she used to let me scrape the uncooked cake mixture from the bowl, or eat the rind off the bacon like a blackbird (me, not her) with a worm. Winter tea-time of fried egg and baked beans. The delicious agony of opening the doors of a glittery advent calendar, waiting for Christmas to arrive. The invaluable lesson thus absorbed that travelling is usually better than arriving. How she so expertly trod the tightrope between allowing me absolute freedom to live my life as I wanted, whilst never making it seem like she just wasn’t interested. Her unselfishness. Her hopeless inability to give directions to a driver, particularly in her home-town Middlesbrough where, if mum was to be believed, every road seemed to lead to every destination.

So much to remember. So much to be grateful for. And everything there may be to regret – my fault, not hers.

Thanks mum. I love you very much.

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Should I stay, or should I go?

“You’ll be making me out a liar in a few minutes, mum, but we’ve been talking recently about maybe it’s time to move into a home, haven’t we?”

“Have we? I’m quite happy where I am.”

My brother looked at me and shrugged. “This is the problem.”

Over the next few minutes it transpired that mum had in fact herself brought up the business of perhaps moving out of her home. In her more lucid moments she knows that things cannot stay as they are for ever. There have been several recent incidents that seem to reinforce the wisdom of her thoughts on the matter. She’s lost a couple of keys lately, but unfortunately after she’d locked herself in for the night. Had there been a fire, the consequences would not bear thinking about. She is also not eating as regularly, or perhaps as well, as she should. In her own mind, it seems, it’s company that she most craves. She talked about the ease with which her friends could still visit her if she went “next door” to the care home that she already knows well. She would have more people to talk to, she mused.

“Oh, I know we have talked about it”, she went on, contradicting her denial of a mere two minutes before. “But I’m quite happy where I am. Although, if you said it was for the best, then I’d obviously go next door. I know you would never give me bad advice.”

As my brother said, this does not really make it any better. In fact, it makes it a great deal worse. Mum flits seamlessly between denial and compliance, as likely to tell us off for talking about her rather than to her as she is to wax eloquent about her wonderful sons that always know, and do, what’s best. As we edge closer to the fateful decision, the last thing we want to hear is that she’ll do whatever we want. Largely because we don’t want. We don’t want her to lose her independence. We don’t want her to burn to death because she’s lost the key. We don’t want her to neglect to eat. We don’t want her to be lonely. And perhaps most of all, if we’re honest, we don’t want it to be our fault. It’s a responsibility we’d rather not have to bear.

But that isn’t the point, and we can’t evade this decision. And we know, eventually, that it will be ours, and not hers. It doesn’t have to be yet. It will, however, have to be soon.

Mum doesn’t know if she should stay, or if she should go. Whether she should trade her home and her identity for a bit of company, and, as I might say to my board, better managed risks. Frankly, nor do we. It’s an unenviable choice.

As mum’s Alzheimers progresses, an unpalatable decision looms nearer

Alzheimer’s disease brings many conundrums in its wake. Some personal, some practical, all imponderable in one way or another. When I visited yesterday, I was confronted in different ways by two of them. My somewhat despairing tweet read, “Why, when I know my mum can’t help it, is my default response to her dementia one of irritation?”, and many of my good Twitter friends sent encouraging and guilt-dispersing responses for which I was most grateful. On reflection though, worrying about that puts far too much emphasis on me and my feelings, which are ultimately irrelevant. This is not about me. It’s about my mum, what’s best for her, and when what’s best might be in terrible conflict with what she wants. It’s the practical things that need to take precedence, and need to absorb my energy and intellect, not my personal failings or inability to deal with things or put them in perspective.

So what was the practical conundrum that came into sharp focus yesterday? It’s digital switch-over in mum’s neck of the woods, and analogue broadcasting is about to cease, and for some channels, has already ceased. My brother went to the local TV retailer to ask what he needed to do. As he lives sans télé he’s not in a strong position when it comes to knowing anything about the issue. He was told – with considerable restraint given that he was asking someone who makes his living by selling televisions – that it wasn’t necessary to buy a new set owing to mum’s great age: a government scheme would provide her with a new aerial and digital decoder for nothing. So he called the organisers of the scheme, and they confirmed it was indeed so. He told them on no account to contact mum directly as she’d be totally confused, but rather to arrange their visit through him. They agreed to do so. It was with some surprise then that he went round to mum’s to find the old aerial propped up by the front door. He asked her if anyone had been round. No, no-one had called. Inside he discovered a hole in an internal wall, a new digi-box, and a set of instructions. This must all have happened within the previous hour, and yet mum had no recollection that someone had been into her house, clambered over the roof, drilled a hole, and given her a quick lesson in the wonders of digital technology. My brother knew that this had happened though, because the forgotten visitors had left a “quality control sheet” on which they’d ticked a number of boxes reassuring the world that they had done all this, provided the lesson, and that my mum had been entirely satisfied with the service thus provided.

Except that she wasn’t. My mum insists that television is of no interest to her, and that she never watches it anyway. And if she does, she only ever watches BBC1. Only the last bit is true. The installers had left the television still only receiving the remaining analogue channels, among which BBC1 is not present. In place of BBC1, my mum was entertained by Brownian motion and unpleasant hissing. For all that this might frequently be an improvement, my mum was not impressed. My brother’s profound ignorance of all things televisual rendered him unable to assist. He told mum that he’d seek advice. In the meantime, she’d not be able to receive BBC1, but that wouldn’t matter, would it, as she never watches the telly?

Well, apparently mum’s need to watch the telly is greater than she’s prepared to concede. Within hours, my brother was inundated with calls from concerned neighbours and friends. My mum was standing at the garden gate, stopping complete strangers, and telling them that her TV wasn’t working. She invited these unknown passers-by into her home, to see if they could fix the offending equipment. Some of them even left helpful notes about what they’d done, and what they’d not been able to do. Fortunately, after some messing about, I was able to sort it all out. My mum now has 100 channels and more, of which she’s not interested in 99. But at least, when she turns on the telly, her beloved BBC1 appears. I’ve hidden the remote control. She’s no idea how to use it, what it’s for, or why it exists. Random pressing of the buttons of this alien life-form is unlikely to be helpful.

And so this small crisis is over. But it will doubtless be replaced with another, and another. It’s hardly a good idea for a confused 91 yr-old to be inviting strangers into her house. It takes only something such as this to disturb mum’s routine, and lead her into risky and potentially very dangerous territory. At the moment, she lives alone with visits from carers (who deal with her mountain of probably pointless medicines), and my brother’s regular watchful attendance. She’s happy there, if happiness can be said to consist of constant wandering from room to room, of endless adjusting of cushions, of repeated visits to the loo just in case. But the rooms she visits are her rooms, the cushions are her cushions, and the lavatory seat her lavatory seat. I’ve visited too many homes for the elderly, seen too many old people staring vacantly out of unknown windows, listened to too many desperate expressions of fear and confusion, observed too many strangers tending too many weary, empty husks of humanity, to want to inflict such modern torture on my mum.

But for how long? When do the risks of everyday life for a demented old lady become too great to be permitted to continue? Where does our duty lie in trying to balance today’s happiness against tomorrow’s risk? What would we have felt, what would the inevitable inquiry have concluded, had one of my mum’s unexpected and unknown amateur television engineers bludgeoned her to death, and stolen every last remnant of her possessions? I don’t know. I really do not know.

One son responds to another on Alzheimer’s

On Sunday I published a post about my mum and her Alzheimer’s, and how my approach to the difficulties and dilemmas of the disease differed from my brother’s. One of the curses of the internet is that bloody well anybody can see what you’ve written. Oh, hang on…

Well, following on from my washing of my family’s slightly soiled, if not exactly dirty, laundry in public – and as they say in the best magazines – a brother writes:

“Here’s a poem showing my infamous technique in action {i.e. the remote control of my mum’s story CD as referred to in the link above}. I wrote it about a 92-year-old who looked and talked exactly like Margaret Rutherford. Each night she packed all her belongings in a suitcase and each morning we had to explain who and where she was.

Cloudy Morning before Breakfast

Once again you are ready for departure.
The wardrobe empty, and clothes stuffed
in a bursting suitcase. But you haven’t left.
Still you linger at this muddy shore –
the watery sky, the grey sea – a slush of
days that bring neither pleasure nor pain.
You look at me doubtfully. Faded eyes
cannot fix the connection we have;
the intervening night has undone it.
This is not your room. Neither these
curtains nor the potted cactus, nor those
knots in the stripped pine. You deny it all.
Slowly I unpack. Cheat, by turning over
objects you’ve told me about before.
‘You wore this when Alfred got his MBE.’
‘Why, yes’ you say, ‘I believe I did – fancy
you knowing that!’ ‘And these shells from
the beach where Bert dropped the ice-cream.’
Yes!’ you say, and an inner sunshine
lights the long drowned day. Carefully we
reclaim the fragments, sift the years.
Now you know when you were born;
what happened to Arthur during the war;
that we can cook eggs here just the way
you like them: ‘Sunny side up!’ I say.
You beam. ‘Come along then!’ you reply.
‘What are we waiting for?’ We laugh, and,
holding hands, make it to the bedroom door.
But confusion snaps, and still unable to quite
place me, you give me a worried look.
‘I say – I haven’t married you, have I?’

“Mother once told me she found it easier to talk to me ‘because we had you longer, as it were’. Meaning that I didn’t go to Uni, presumably. And I wonder whether the public school thing has any relevance here? If you’re ‘ordinary folk’ (and ma and pa were more ordinary than we (or they) ever believed) – if you’re ordinary folk who pack their boys off to public school (for albeit excellent reasons I’m sure!) I think you inevitably create some social or intellectual division between you and your children. You and G {our older brother} have far more ‘intellectual rigour’ about you than me and mum, which is cool, but you’re probably less able (and maybe less willing) to cope with the inconsequential chit-chat that most of us fill our lives with whilst not bothering to think about anything! [Just look at Facebook!]

“Being a theatrical type, I don’t mind hearing the same stories over and over, in the same way as I’m quite prepared to watch The Mikado for the 43rd time. There’s something comforting and reassuring about predictability – hence the attractions of Anglo-Catholic ritual, I suppose, or watching Chelsea win everything [‘cept they didn’t! Huh!]. If all mother has left is a few stories, then let’s hear them. I’m not sure I’m quite as clever with the CD tracks as you suggest, but by triggering a few it puts her centre stage, otherwise she’s just pulling faces and saying ‘I don’t know what you lot are all talking about…’ [Sometimes, of course (oh joy!) she produces a track I’ve not heard before – or tells an old one with some added extra – a bonus track, huh?]

“There’s no need to feel guilt – it’s just a situation that is, and we’ll all go some way along the same road at some stage (and maybe even further than mum has). My only qualm is that G catches most of the difficulties, and I don’t get over there half as often as I ought.

“Here’s a thought: What we gonna do when mother’s 110 and G’s 79???”

I think his poem is utterly beautiful, and expresses the sadness, and the joys, of Alzheimer’s with more succinctness, and a great deal more elegance, than any number of posts from me. I’m also humbled by, and grateful for, his generosity of spirit. It’s rather more than I deserve.

Just one point, however. My brother writes that “ma and pa were more ordinary than we (or they) ever believed”; in the same vein, when he suggests that I and my older brother were “pack[ed] … off to public school”, he probably takes that school’s own self-image too seriously. The educational establishment to which I was “packed off” may well have managed to creep into the fold of the Headmasters’ Conference but it was no Eton, or even Dulwich. It too was more ordinary than it ever believed. As in so much else in life, it probably looked better and more exciting from the outside than it ever did from the inside. Much in fact like the “intellectual rigour” attributed lavishly, if undeservedly, to G and me.

A tale of two sons

I came back from a visit to my mum yesterday feeling as I always do. Guilty, frustrated, sad, hopeless, not knowing if I think my mum is better off alive or dead. As regular readers will know, my mum is now 90 and has been diagnosed with Alzheimer’s. She’s a long way from the worst end of the spectrum, and the new treatment she’s on does seem, unless I imagine it, to have slowed the rate of deterioration. So she knows who I am, and many people would consider her to be perfectly coherent. Or at least they would, so long as their contact with her didn’t exceed the length of time it takes for her story-tape to wind full circle and get back to the beginning. The half-life for that varies from about 10 minutes to quite a bit longer, and my rather more cruel younger brother has perfected the technique of being able to control the story-tape almost at will. In fact, it’s more like a CD than a tape: it’s possible to select tracks at random and they don’t have to be repeated in order. My brother can now predict with a sad but foolproof accuracy what stimulus will inevitably evoke which story. It feels horribly manipulative – even though there is a macabre kind of comedy in it – but actually it is a more successful method of interacting with my mum than I’ve managed to come up with. It may be distasteful, this deliberate eliciting of the same time-worn stories, but in a way it is devastatingly honest. It doesn’t pretend that a real, and real-time, conversation with my mum is any longer possible. My brother has worked for years with Alzheimer’s patients, and he doesn’t allow emotional closeness to get in the way of what works.

But I don’t seem able to make the same rational, detached leap from anxious and guilt-ridden silences to flowing, guilt-free interaction. I envy my brother, and recoil from his technique, in equal measure. For me, the problems I have in conversing with my 90-year old mum have their roots in the difficulties I’ve always had conversing with her 40-, 50-, 60-, and 70-year old precursors. Our family has never been hot on sharing the minutiae of everyday life. I marvel at those people who say that they talk to their parents (well, their mums, anyway, which it usually is) every day. What on earth can they be talking about? I would of course have told my mum if, for example, I’d got a new job, or moved house. I might even have told her in broad terms what the job was about, and what it required of me. But I simply could never imagine telling her about its day-to-day happenings or frustrations, and I could never have imagined her being remotely interested. Equally, although the fact of new relationships would eventually surface – it’s hard not to explain the sudden appearance of a son, for example – I would never talk about them until the subject was unavoidably out there for whatever reason. The idea that I might have sought the advice of either my mum or dad about whether to pursue a relationship, or to share with them its first faltering steps, is frankly laughable. So it’s hardly a surprise that when I now visit my mum, I haven’t a clue what to say.

It is self-evidently far too late to try and do anything about it at this late stage. My mum has just about got it into her head that I’m working in Manchester, but Manchester is itself now merely one of my brother’s mechanical prompts. “Oh, Manchester. They say it always rains in Manchester, but I’ve been there twice, and both times it was glorious sunshine!” Swiftly followed by the fact that the first of these gloriously sunny days was somewhat marred by an IRA bomb. There’s no point whatever in embarking on an explanation of what my job’s about, and she never remembers that this sudden move to the North West was prompted by unemployment in London. And in any case, the next question will be about whether or not I’ve just driven up from London, or Manchester. It’s usually Manchester. Which leads us smoothly back to the remarkably counter-intuitive nature of my mother’s meteorological experiences in said city, and how the IRA chose my mother’s visit as a pretext for blowing half the place up. Yesterday, these two stories returned for an encore only a matter of minutes after their first appearance. So my mum’s CD is going to get its tracks regurgitated anyway, and all my brother is doing is broadening the selection, and controlling the order. His conversations with my mum have a steady momentum, and instead of cringing at the repetitions, he whips out the remote control and moves the conversation smartly on. Whilst I do cringe, and try to avoid the stimuli, and am thus left half the time in silence.

And so I am driven to conclude that my brother is not more cruel than I am. He’s just a lot less selfish.

The ravages of old age

My mum is 90 this year, which is not so newsworthy as it would have been when I was a kid, but an achievement all the same. Or perhaps I should say that I know an old lady who will be 90 this year: the extent to which she is still my mum is what has prompted this post. She’s just spent 2 weeks with us in France, and it’s the longest uninterrupted time I’ve spent with her for several years. The standard “overnighter” doesn’t reveal the same degree of decline, or highlight it with quite such ruthless contours.

She was officially diagnosed with Alzheimer’s about 18 months ago, but it’s clear that the disease had been wreaking its particular havoc for a long time before that. There are of course many sufferers much more severely affected than my mum; she still knows who I am, and most other people if she’s known them long enough. But her ability to recall trivial things over more than a few minutes is seriously compromised.

“Now, where am I?”

“In France, mum.”

“France? But how did I get here? I haven’t told anyone I’m going away, you know.”

“Don’t worry, mum, you did! Everything’s OK.”

“Well, I think someone could have told me what was happening!”

“Mum, we did. We’ve been planning this with you for 4 months!”

And so on. Along with going to the loo every half an hour, and every time having to ask where it is. All mixed in with random things that have somehow lodged in her memory, such as the appointment with the dentist that my brother is supposed to have made for her back in England, and which she is forever hoping he’s not forgotten to do.

Although the constant questions about the same things, the repeated panicking that she’s brought no clothes with her, the permanent apology for “being in the way”, which she isn’t, can all become wearing after a while, it’s not that which really matters or concerns. The really dispiriting and emotionally draining aspect is reflecting on what all this confusion must be like for her. It’s hard to imagine how it must feel to be so continually and totally disorientated. If I simply can’t remember the most apposite word for some thing or situation it drives me to distraction until I’ve recalled it, but that is as nothing compared to this. The frustration and terror must be unendurable.

On Monday I arrived with mum at the pre-arranged meeting place where my brother was to collect her and take her back to Lincolnshire. As she goes off with him, she turns to me and says, “Thanks so much for the lovely weekend!” My brother and I look at each other and shrug. What else can we do?