Friday, 19 May 2017

Life choices – argon, funeral pyres and wish lists

There is an elderly woman who lives next door who is senile. Senile is probably not a pleasant word, but then again nor is dementia (she’s demented?). The sad reality is that she lives alone, has no family to visit her, has twice daily visits from carers as she cannot be trusted to look after herself (the gas was switched off several years ago as she was leaving it on in the house) and doesn’t know what’s going on half the time. She passes the time by sweeping her driveway. Hour after hour passes whilst she shuffles from one side to another, feebly brushing at the block paving, irrespective of whether there is any detritus or not and occasionally stopping to watch the world go by. Given her state of mind and the fact that there is genuinely no cause to brush her drive, she ends up engineering problems – this can involve throwing food onto the driveway then returning a few minutes later to sweep it up, or pulling leaves from one of the trees, or more frequently venturing out to the roadside and sweeping the pavement. The latter is a deeply precarious exercise; she bears a perpetual wobble and this is more pronounced as she nears the roadside (a reasonably busy roadside), sweeping out the various leaves and twigs into the road (as a child might sweep crumbs off their table mat), causing the passing cars and lorries to veer out of the way, beeping their horns at her in the process.

You might well ask what I do whilst all this is going on? At the first opportunity after moving in and noticing this bizarre ritual, I pleaded with her to stop and immediately realised that she is incapable or at least completely unwilling to change her ways. Following conversations with the neighbours, it transpired that this behavior has been going on for quite some time and the care workers are not especially receptive to anyone broaching the subject with them. Aside from the concerns over safety (both to herself and to car drivers and pedestrians) there is the small matter of stuff being dumped onto adjacent driveways (ours included), glass bottles being thrown and smashing on the pavement and shrubs and flowers being torn as she absently roams the area decimating anything in her path. On several occasions she has been caught wandering the streets, oblivious to where she is or quite what she is and in recent weeks she nearly caused a major accident by trying to push a pile of debris into the main road. With all this in mind, I contacted social services and had a lengthy conversation to explain the situation, with a clear message to them that if they did not intervene soon then there was every likelihood that an accident is likely to take place (most likely a car accident in which an innocent person would be caught up trying to avoid her flailing or even collapsing in the middle of the road). They asked me to compile a “diary” of events, which I did, only to then ignore me and make no intervention whatsoever. As such, she is still out sweeping, still causing mayhem and shuffling ever closer to certain ruin. I only hope my children are not present if she ends up being flattened one of these days. The solution – given her circumstances – is very clear to me. With no dependants or family and with a bungalow on a premium street address, it would make perfect sense to sell her property and move her into residential care where the proceeds from the sale of her house would more than cover the cost of 24 / 7 care, keeping her safe and protected whilst also ensuring nobody else is caught up by her actions. Sadly with the care workers standing to lose out from this and social workers unwilling to step in, I fear that this obvious and logical step will never happen.

If the miracle did take place and they were to move her into a home, what then? Whilst it would be by far the best course of action, it would not cure her condition, which is seemingly a terminal descent into oblivion. I have had numerous discussions on the topic of dementia (there’s that awful word again) with my family and on every occasion I am absolutely clear that in those circumstances I would wish to be humanly put down rather than suffer a slow deterioration until death arrived. I understand that might sound depressing, but honestly, why would anyone wish to live for very long with such an illness, especially in later life? This cropped up in discussion in recent days with the Tory Party Manifesto and the move to use the proceeds of a deceased person’s estate to pay for social care rather than when they are alive. Alison is quite critical of this and struggled to understand why I didn’t share her concern (famously I am super-opposed to inheritance tax, believing it to be state-sponsored theft). My point is that at least in these cases a person is standing to benefit from the care they have received and are essentially paying for a service. But why pay at all? Is dementia not simply an unfortunate lottery in which certain unlucky people are made to suffer not only physically and mentally but also financially? 

Here is where I think the whole set up has failed and, if I might be so bold, I will make more of a controversial suggestion. At least some people might find it controversial – for me it is purely sensible. Why do we even keep people alive with advanced dementia? Why on earth would anybody wish to be locked into such an awful state? Why would anyone wish to see their friends and family in such a condition? Why are we spending our time trying to work out the costing for this in an aging population, whereas we could be looking into offering people the right to hop off the misery train and have the right to die peacefully, humanly and in a dignified way? Whenever I start on this topic, I am always overwhelmed with howls of protest, criticism and negativity, as if I am making a ridiculous point, being deliberately controversial or just plain silly. I am really not. Never have I been more serious. In that condition I WOULD NOT WANT TO LIVE. Seriously, what is the point in being a physical, psychological and financial burden to all and sundry, whilst all their efforts are trained on keeping alive someone who has no idea of what is going on and zero quality of life? But okay, I get that this opens up a whole serious of questions. Who decides when someone lives? What about family with a vested interest in an estate? What about the religious aspect? How do you humanly end someone’s life, etc, etc… Allow me to explain.

Firstly, we should all get the chance to specify whether we live or die. At the age of 18 or 21, it should be mandatory to complete a legally-binding form with full details of all these sorts of decisions (including by the way permission or otherwise to donate organs, approach to other life-threatening illnesses, etc). These choices could be changed in confidence at any point, based on evolving beliefs or feelings and essentially give others the instructions on what to do in the event of incapacitation. I find it curious that as a society we are so against these sorts of choices with so many counter-arguments being put up against euthanasia and taking command of our own destiny. None of us get a say in whether we are born in the first place and it strikes me that the same can be said of death – even if the practicality and means exists to do something about it. It is no wonder that so many people contemplate suicide for example as a way out of grim circumstances. I digress here, but even the options available to us with regards to our funeral and burial are governed by ridiculous protocol. For instance, I have for a long time expressed a wish to have an Ancient Greek style funeral with my body on a wooden pyre (perhaps on a beach for dramatic effect). The last thing I want is for my body to be buried in some ghastly underground tomb inside a coffin (Victorian fingers scratches anyone?), nor do I like the idea of passing though an incinerator like some sort of sausage machine. Accordingly I have given these instructions to my family who, aside from remarking quite reasonably that it’s a macabre topic, point out that such a “burial” might not be legal in the UK. Why in heavens name isn’t it? Whose business is it how I bow out and what difference does it make to them anyway? Ridiculous…

The second major point of contention comes with the method of euthanasia. Again, I cannot help but think that our mental efforts have in the past been wasted. Several years ago, the ex-Tory MP Michael Portillo made a program on the BBC investigating capital punishment and the science of death, specifically trying to pinpoint the most humane way of executing a human being. The program partly focused on the morality of capital punishment but was mainly an exercise in scientific research and to cut a long story short he concluded that insert gas asphyxiation (essentially inhaling a nitrogen or argon based gas – I cannot recall which) is utterly painless and simply causes the person to experience a blissful few moments before dropping down dead. I am personally against the death penalty for a great number of reasons (a different subject for a different day of the week) but why on earth are we considering such “pleasant” methods for criminals when such tools are available to help those suffering or in terminal pain? If I were ninety years old, bed-ridden, completely ga-ga and someone had given me the choice to have some gas pumped into my room to send me off to meet the fairies on a permanent vacation Id bloody well jump at the chance! And so would most sane people I’m sure! And in the process, we’d cut the cost of social care and all the anguish and pain that flows through society with the onset of dementia and similar conditions.

I cannot help but feel that the continual burden of religion and the way that religious beliefs have shaped our laws, customs and behavior has led to this strange sort of inertia where we thrown enormous sums and money, effort and energy into trying to manage the deterioration of our lives without taking a step back and actually re-examining our approach to the system. Ask yourself this: if we were designing a brand new society, free of the burden of our past, would we honestly deal with things the way we do now? Would we not empower individuals to shape their futures and make decisions whilst they are in a free and sane state of mind? Perhaps if the old lady next door had been given the opportunity of foresight then she would have made the call and would have put her broom down several years ago. 



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