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.

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.

Panorama: appalling journalism uncovers appalling elderly care

Time was when the BBC’s Panorama programme was the journalistic jewel in British TV’s crown. Hard-hitting, but dispassionate; evidence-based and offering information from which the viewer might draw their own conclusions. That way of reporting is not the same thing as being in some artificial way neutral: investigative journalism isn’t about neutrality in the face of manifest wrong-doing, but it is about creating some distance between the reporter and the issues reported. A good piece of journalism in this genre is about the issues investigated: it is not some sort of opportunity for the reporter to display their own commitment to being on the side of the angels. It is not about them, after all.

Last night’s programme was investigative journalism re-packaged as consumer outrage, with the reporter breathlessly centre-stage throughout. “Look how appalled I am”, the programme screamed. It was all focused on the emotions of the daughter whose mother was being badly treated, and equally on the reporter’s emotional solidarity with her. It was reminiscent of Watchdog, or worse still, That’s Life. No attempt whatever was made to contextualise the undercover footage collected by the daughter. Nothing was said about the politics of elderly care in modern Britain. No politician was questioned. No economic analysis was offered. Nothing was said about the employment and recruitment practices of private care providers. When the regulatory environment was mentioned, we were pointlessly taken to outside the regulator’s offices to see again the reporter’s outraged and emotional credentials, but once more it was consumerist outrage that was uppermost in the programme’s mind. It could as easily have been a programme about a supermarket’s mouse-enclosing loaf of bread. “Ain’t it awful!” we were invited to agree. Well, yes, it many ways it was, but the programme merely scratched the surface, and left much more concealed than revealed.

Relentlessly the programme’s moral outrage was focused on the individual care staff, who were eventually hounded into unemployment and in one case, the courts. How disgraceful that these hapless workers should have the temerity to discuss their appalling terms and conditions of employment. One thing that united these care staff, apart from their manifest professional inadequacies and slave-labour wages, was that they were all non-white, and immigrants. Before everyone gets the impression that I am suggesting that there is something wrong with having either of those attributes, let me be clear. It is not their race or their immigration status per se that’s important: it’s what those things say about the market in care work staff. Poor conditions and poor pay cannot attract sufficient workers from the British labour market, and so employers must look further afield to where wages are lower, conditions are worse, and thus make their offer attractive to workers in low-wage and labour rich markets. Couple this with lack of training, and criminal negligence from their managers, and the ghastly events recorded by the programme are indeed repugnant, but they are not a surprise. Left without any contextual analysis, the programme was effectively reinforcing the notion that if you employ Filipinos or Africans, this is what you get.

The problem of care for the elderly is indeed a scandalous and a pressing one. What we need are programmes that help us to understand what has led us to this malaise, that challenge the cuts in spending, and the cultural changes that leave our elderly citizens with no-where to go other than to institutions run by private sector commerce needing to make profits out of paper-thin margins. The problem is one of social, economic and political priority – or the lack of it – given to the needs of our ageing population. Difficult matters. Challenging matters.

How much easier to show emotive footage and an earnest reporter, and leave the difficulty and the challenge aside. How much easier, too, to hang out a few individuals to dry – and to show with triumphal, callous indifference, a wife and child who will now be husbandless fatherless for 18 months, and to revel in the perpetrator’s likely deportation. Job done.

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.

Goodbye, bitter-sweet month of June

Apart from the crassly obvious fact that the various branches of my family have evidently seen October as a particularly conducive month for shagging, it’s hard to know what to read into the fact that for me June is littered with significant birthdays. At the beginning of the month, my mum was 91. At the end of it, my son was 20. And in the middle my dad would have been 96. He isn’t, of course, as death has intervened. I should also note that this October shagging malarkey has jumped a generation, since my own parents clearly preferred a get-it-over-with-earlier-in-the-year approach to procreation given that my and my brothers’ birthdays occur long before the first cuckoo has troubled the readers of the Daily Telegraph.

But all this birthday-ing in June always leaves me scattered to the four winds emotionally speaking. Of course, birthdays are generally a matter for celebration, and for raised spirits. But they are also times for nostalgia, perhaps even sadness. Sadness that my mum potters along in a haze of confusion that I am powerless to dispel. Sadness too that my relationship with my son is more complex and more distant than I would wish. Sadness, of course, that my dad’s birthdays are now virtual rather than real.

My brother – the one who writes these and who engaged me in Alzheimer’s discourse – retrieved a recording of my dad singing an aria from Haydn’s Stabat Mater and I listened to it on my dad’s birthday last month. To be honest, between dad’s lack of preparation and the limitations of an old reel-to-reel tape recorder, with non-directional microphone, Haydn was probably twirling in his own grave. Not so much a rendition as a massacre, which is why I’ve spared you the 1967 home version and linked to a proper performance. But although my dad was no professional singer he had a sweet-toned tenor voice, and the key thing in that home recording is that it is his voice. It took me back, and set me thinking.

My dad died in 1994 after a three-week spell in hospital suffering from congestive heart failure. As ways to die go, I suspect this isn’t the worst; a relatively gentle downhill slope, mercifully alert and not doped to the eyeballs with morphine as might be the case with a death from cancer. As a family we’re about as demonstrative as so many blocks of wood, with all emotional transactions laced with so much irony and camouflaging humour that they are almost undetectable. Thus it surprised me in a way that I was so anxious to be with my dad when he finally died. I was on my way back to London from my last visit when I had the overwhelming desire to return to the hospital, and had my partner drop me off in Newark so that I could get the train north again.

I slept in the ward, and awoke early to go back to my dad’s bedside. He was weak, but alert. For the first time in 30 years I took his hand in mine. He turned to look me straight in the eye. A quizzical look, surprised at the sudden touch, and an equally sudden realisation that this could only mean that the game was up. The words “Love you , dad” came unbidden to my stumbling lips, but they never emerged. They were swept aside by the calls of “Nurse!”, driven by my urgent need to know if, for the first time in my life, I was holding a dead man’s hand.

So my dad never heard me tell him that I loved him. And I don’t think he ever told me explicitly that he loved me. History may sadly be going to repeat itself. But at least there’s this, this blogging business, this public stage for private exchanges. Perhaps, when I too go to my grave not having said the things I should have said, and possibly not having heard the things I want so badly to hear, my son will read this stuff and know what his 20-year old self maybe doesn’t know. That I love him more than he can ever imagine, and so much more than I’ve ever been able to express. And who knows I might, even now, pluck up the courage to tell him to his face. I hope so.

The cruelties of geriatric care in the NHS

Another damning and distressing report from the Health Service Ombudsman thumps onto the desks of NHS managers today. Again, in numerous case studies, the neglect and inhumanity of the care offered, in all our names, to old and vulnerable patients is laid bare in its horrible, incomprehensible reality. As has been said repeatedly this morning, there is of course much more good care, many more consummately professional and humane nurses and doctors, than there is of the disgracefully callous lack of care depicted in this report. But it has also been acknowledged that we are not dealing here with one or two outrageous cases which serve only to point up the excellence of care generally: there is something going on here which is much more systemic, more widely distributed, and more unforgivable than that.

John Humphrys, in his telling interview with ombudsman Ann Abraham, put it very succinctly. This is not about professional incompetence. It is about inhumanity, lack of compassion, and the most basic failure of respect for other people. And as he also pointed out, this is not news. We’ve been here before. So often some hapless NHS manager has been wheeled out to express their shock, their horror, their incredulity. And then their determination to put it right, their insistence that this is a tiny minority of cases, their assurance that weaknesses will be addressed.

What is going so terribly wrong? Why does it seem so impossible to put right whatever it is that is going so terribly wrong? There will be claims that it is a lack of resources; an obsession with targets rather than patient care; a deficit in the training and supervision of staff. None of it will wash. Because this appalling drama is played out not in reports, nor in policies, nor in budgets, nor in training. It is played out in the human interactions between individual staff and individual patients. It is the result of the innumerable discrete choices that staff make not to care, not to be moved, not to notice.

If that is the “what” of the problem, can we say anything about the “why”? I think we can. I do not pretend that what follows is in some sense a definitive, or all-encompassing explanation. Indeed, many will find it outrageous and offensive, and reject it out of hand. But I offer it nonetheless, knowing that it is in itself both partial and insufficient. The cruelties and neglects of staff towards patients represent one direction of travel in the staff-patient relationship. There are, too, the attitudes of patients and their families to staff. When my mother-in-law was diagnosed with motor neurone disease, and fell headlong towards ever greater dependency, I was able to observe not only how she was treated by the staff in the hospital, but also how many of the patients treated the staff. To be honest, neither was very attractive.

In London, the great majority of ward staff are from ethnic minorities. Their command of English is not always as secure as it might be. On the other hand, although there are increasing numbers of older people from ethnic minorities in geriatric care, the majority of the patients I witnessed were white. Not surprisingly, they were of course old. Older white people – yes, I know this is a generalisation – are not always as thrilled by immigration or ethnic diversity as perhaps we’d like them to be. The black nurses had to deal with a lot of racism from their patients. A lot. On the other hand, a lot of old people, with less than perfect hearing, were frequently left entirely baffled by what the staff were trying to tell them. Mutual incomprehension often led to mutual irritation, and sometimes mutual hostility. Some of the patients routinely shouted at and abused those charged with looking after them. Too often, the patients’ families were no better.

In a blog it’s not much use to exhort you to “read my lips”. So I’ll use bold italics to do the same job. I am not saying that any of this justifies, or excuses, cruel, inhumane, disrespectful behaviour from staff. You’re clear about that, aren’t you? But in this sorry business, it is exactly the nature and quality of the relationships between staff and patients that is what counts, what determines outcomes. We live in a country where immigrants are routinely denigrated, blamed for all the ills of society; where black people are still confronted with racism every day; and where newspapers such as the Daily Mail seem to make it their particular mission in life to exacerbate rather than diffuse these tensions. It is perhaps not surprising that our hospitals, relying as they do on those very immigrants and black staff, are thus places where those tensions come to the surface most acutely.

It would be stupid to try and suggest that today’s ombudsman’s report, and the horrors it reveals, can all be reduced to this one issue. We do, however, need to face the fact that inhumanity cannot be dealt with by a policy re-think, or a training course, or an increase in expenditure. Something is rotten in the relationships between patients and their carers: all I’m suggesting is that not all the fault, not all of the time, rests with the latter.

Birthday blues

As the weather gods bless Manchester with a cloudless blue sky, and the winter sun streams through my office window, it’s hard to give much credence to seasonal affective disorder. But January and February are not my best months. Not, in fact, that my particular SADness has got anything to do with the weather: it’s more that January means mostly that Christmas is over, and the next one is unimaginably far off; whilst February brings my birthday around once more.

The post-Christmas January mood rebound tells you more about just how much I love Christmas than it does about how bad January makes me feel, and so both you and I can safely discount its true significance for my normal joie-de-vivre. February is different. My birthday really does depress me. Strangely, this has always been the case, long before the march of the years left me no longer able to suppress the realisation that I’d long since passed the half-way point, and that the time left before death is now much shorter than the time I’ve already squandered. I think the earlier disappointment of birthdays was more to do with presents than anything else. My parents really tried hard to make Christmas special for us, and February came round a bit too soon for the coffers to have been replenished. So whilst I still look back on opening Christmas presents as a moment of almost orgasmic excitement, my recollection of birthday presents was always as of an event that underwhelmed. Should that make me sound both mercenary and ungrateful, I might perhaps add that part of the wonder of our family Christmases was their shared nature. I was as excited by the presents my brothers received as I was by my own. Birthdays, however, were a solitary affair. And a solitary disappointment is always the harder to bear; and even as a child I knew that expressing that disappointment was ungrateful, and the cheery pretence that my mum’s hand-knitted jumper was just what I’d been hoping for was necessary, but also wearing.

But none of this has much to do with birthdays now. Perhaps these early memories have simply contaminated my birthday soul, and some kind of regression therapy is called for so that I can re-programme myself to enjoy birthdays in the future. I doubt it. The birthday blues are now grounded not in juvenile ingratitude, but in adult apprehension of mortality. If I could live forever, I would. I’ve no understanding of those who say that eternal life would surely be lonely as friends and family die. I’d make new friends. And in my version of eternal life I can assure you that there is no hint of erectile dysfunction, so if old family died out, I’d be perfectly happy to instigate some new ones. Of course, in my fantasy of living for ever there would not only be a perfectly working penis, but everything else would be tickety-boo as well. No arthritis, no Alzheimer’s, no physical degradation whatever.

Alas, fantasy is what all that is, to be sure. In reality, the years tick by. I realise that my mental acceptance of mortality is not matched by emotional or psychic acceptance. I still plan as if the horizon of death were not there. I allow years to slip by without any proper sense of what proportion of my allotted time left they are likely to represent. I’m still a consummate procrastinator. I’m always happy to do anything, but not now.

And so I realise with an ever greater sense of desperation that if I haven’t achieved by now the things I want to achieve, then there’s really very little chance that I ever will. I know I’m a hopeless under-achiever. In an odd way this blog is perhaps the biggest reminder of that baleful truth. So many people have said, after visiting me here, how well I write. I know I write well. In my unbridled lack of modesty I sometimes allow myself to think I write better than many who make a handsome living out of writing. I’d love to do that too. But I won’t. I know it. Each birthday rams the message home. You’re getting older, it seems to say, and you’ve got bugger-all to show for it. I know. But thank you, birthday blues, for the reminder. Now, please fuck off until next year. I’d be eternally grateful.