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Joining the terminal carer club

There are many reasons for my decline in Samizdata productivity during the last year or two. The feeling that I had said a lot of what I had to say, and the feeling that, me having said it, the world seemed disinclined to listen very carefully to it are but two that spring to mind. And then there is the fact – no mere feeling – that professional journalists have become rather less snooty about blogging than they were (they could not have become any more snooty), and that some of them have now got quite good at it. Other bloggers who started out as amateurs have become professional journalists. All of the above makes difficulties for amateurs like me, sapping my will to blog, at any rate about ‘issues’.

But just lately, another very different distraction has entered my life. My mother is now a very old lady. And suddenly, it has become all too clear that she will, quite soon now, die. A few short months ago, Mum could still look after herself, with only occasional visits from my eldest brother and more recently, daily phone calls from my sister. Luckily for us all, brother Toby lives a short car ride from the family home that we all shared half a century ago and where Mum still lives. But just recently things took a turn for the worse, and now one of us must be present in the morning and in the evening (soon it will be round-the-clock), in person, for our duties to be performed properly. Also rather luckily, my sister is a retired doctor. She was what we call in Britain a GP, a general practitioner. Actually she is a retired GP who now lives on the west coast of Wales, but such are the wonders of email and cheap phone calls these days that her wisdom is a daily boon to the rest of us. She is now the captain of the ship, so to speak, even when not physically present.

Do not pity any of us. My mother has lead a full life, having been part of a generation and a country and a class which did great things, but had many contemporaries who were cut off in their prime by war, including in her case her elder brother John, killed in 1940, during a naval target practice. Pity her for that, but not me and my siblings for our mother’s impending death, aged 94 – more if she lives until May 2009, as well she might. Her death, when it arrives, will be an entirely different event to those horrors when someone is cut off in their prime as Uncle John was, or as a lady friend of mine with a daughter still at the toddling stage nearly was by untimely and sudden illness a few months back. I also still recall the clear-blue-sky shock when an aunt, who lived quite near to us, died in her mid-fifties after routine but bungled surgery. Untimely death is something else entirely to what my brothers, my sister and I are now experiencing, at just the one remove.

But timely death has a flavour and an atmosphere all its own, not the least of its features being that all concerned know that it is inevitably going to arrive soon. Being intimately involved with such a death, I am now starting to realise, means that you enter one of those large clubs of strangers that give melancholy shape, but also wisdom, to human society.

There was, for instance, that famous club consisting of all the men who had endured but survived life in the trenches of the First World War. Members of that melancholy club could apparently all recognise one another immediately, because of the particular haunted look that they all had.

By no means all but many of that unhappy fraternity were members of another and bigger club, the club of those who have killed.

And what of that particularly unfortunate segment of humanity who have killed another person or persons by mistake, through serious negligence, a moment of carelessness or just by being the instrument of a malign fate? What of the doctors who, it was rumoured at the time, killed that unfortunate aunt? What of the sailor or sailors who killed Uncle John? Pity them. I do. I recall a driving blunder I committed in my twenties which could all too easily have got me into this club, and I have surely committed many other forgotten follies that might similarly have killed someone (perhaps me), and thereby utterly changed (or ended) my life.

Happier, with regrettable exceptions, are those great majority clubs of Big Boys and Grown-Up Girls who have had sex with one another. And although not myself a father, I have recently got to know that in addition to the great and obvious Sisterhood of Mothers, there is the great Brotherhood of Fathers, whose constant cry is: “What they don’t ever tell you is …!”

Clearly I will not be a full member of the Terminal Carers Club until the terminus is arrived at. (One of the features of TCC membership, I am learning, is jokes of various sorts about death, often involving euphemisms a lot more inventive than that one.) And equally clearly, there is a big difference between being a lone carer, and being, as I am, part of a caring team and a junior one at that. But already I am sampling some of the privileges of membership, such as the recollections of other more senior members of the club. My eldest brother, for instance, spoke on Christmas day of the final, cancer-ravaged and acutely painful hours suffered by his much loved mother-in-law, and of the knowing looks exchanged with doctors as the final dose of morphine was duly delivered. That was not a story I had heard before.

In general, I suppose that most TCC members have given some thought to the euthanasia debate, even as they arrive at very different answers. None of my opinions on this debate look like changing very much now. I wish my mother could be allowed to make her exit at a time of her choosing, but fear that she (and many others with her sort of highly developed sense of duty) might feel obligated to die, in order not to be a nuisance. I understand why most politicians want to steer clear of legislating about this. The right to end life is hard to contrive without the right to go on living of others also being put under severe strain.

There are of course dozens of facts and feelings and discoveries associated with doing terminal care for the first time that I could write about. I will end this by mentioning one that has surprised me. One of the odder things that I have felt so far concerns what happens in a house which was until recently within the control of the soon-to-be-deceased. I have of course been in this house many times, and not just when I lived in it as a child. But now I and my siblings occupy it in a new and rather unsettling way. Personally I feel a little as the Visigoths may have felt when they occupied Rome, rootling around amongst the possessions of their former rulers, no longer needing permission and with no one to tell them to stop. I did a posting about a discovery I recently made, in what used to be my Dad’s room but which is now the room I am occupying. Mother, who until so very recently was in firm charge of her house, even as she depended more and more on others to help her look after it, now confines herself to the far half of the top landing. So, the rest of upstairs and all of downstairs is, well, ours.

Of course I knew that it would all become ours, sooner or later, come … terminus time. But what I didn’t see coming was that this process would begin while the journey was still in progress.

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19 comments to Joining the terminal carer club

  • Brian, I hope your mother leaves this life without much physical pain. My thoughts are with you and you family.

  • Having recently been involved as an associate member of the club (my uncle, who lived in the same village), this post rings many bells. I hope your mother is able to leave in a way that retains some of the dignity I’m sure she had in her prime.

  • Ian B

    I second Alisa’s comment.

    Brian, I recognise some of the emotions you describe, as my own mother passed away nearly two years ago, and my sister and I did what we could, although her symptoms made it a wretched affair (cancer, spread to the brain). That strange sensation of gradually taking over, for instance. At the end, when she was unconscious in the hospice for a terrible final week, I remember thinking about this and discussing it with my sister; our mother had no posessions left except a nightie and a towel. We’d passed points when her home was no longer hers; when she’d never wear the contents of her wardrobe again, when her false teeth didn’t fit, when one or other of us had to take her to the bathroom (a thing I had dreaded until it occurred, but found easy to do, except for the sympathy for her humiliation). It is indeed a gradual process, this shrinking of the person’s world, and, something else I thought, nothing at all like on TV.

    My thoughts are with you all.

  • Alice

    Brian — Thank you for putting into such eloquent words a time of life that many of us from the Flower Power generation are now sharing. Your mother is fortunate to have the support of you & her other children. There are not words to express the comfort you are bringing her.

    I wonder, I wonder, I wonder — if the very fact that death has previously been so remote from the experience of many of us baby boomers is the root of at least part of the imbalance in the society we have created?

    Yes, a high school classmate died when she drove into a gate pillar, and a teenage boy on the edge of the group died of an obscure bone disease. But death was something that happened to other people — a far away, unusual event.

    History books might have told us that, a mere hundred years ago, childbirth was a death sentence for too many women; that many babies died in their first few years; that killers like polio could strike down vigorous teenagers, apparently at random; that heart attacks & strokes laid low husbands & fathers in the prime of their lives. But who pays attention to history books?

    For our forebearers, life & death must have been inseparable, two sides of the same coin. For my generation, life was seemingly guaranteed & permanent. Perhaps this misapprehension made too many of us careless.

  • RW

    Brian, I am in a similar position although my mother is a mere 86. She is mentally degenerating faster than physically and like many people dreads the prospect of being preserved in limbo by modern geriatric medicine.

    I am preparing to have her sign a so-called Advance Statement which states what care should be withheld and in what circumstances. A certain urgency applies in that she has to be of sound mind when she signs it. If you would like more details, including a copy of the draft Statement I obtained from the family lawyer, drop me an email.

    All the best at a very difficult time.

  • Paul Marks

    There is little that can be said.

    Those that we love die, and we ourselves feel our energy and abilities decay – bit by bit.

    The human condition is a vile state of affairs, and neither religious theology or athiest philosophy have ever managed to convince me that it is not.

    However, it is sometimes said that courage does not matter – that it does not matter whether one looks at life squarely or cries and screams for mercy (there may or may not be mercy in some future life – but I am not interested in he type of God who would enjoy such behaviour). I do not hold with view.

    I admire your level headed reaction to what faces you – not because it will give you a reward, but because it is how a man should respond.

    A human being should live decently (as both your mother and yourself have done) in the face of the horror. Not out of the desire for a reward – but just “because”.

    If this life is not all there is – well good (although you are quite correct to point to the lack of evidence for anything else). But whether there is or is not, should not have any relevance for a person responds to the human condition.

  • RAB

    My thoughts are with you Brian.

    I spent about a month in Steatham while we looked after the dying and then Estate of her aunt.

    It is a very strange feeling being in control of someone elses place and possessions.
    Even getting to know her neighbours and friends, who you had never met.
    Like semi aquiring another life.

    As to the rest, what Alisa said.

  • Monty

    Brian,
    Your post was very moving, and I found much of it very evocative of my own experience.

    The best advice I can give you is this.

    Don’t expect yourself to be unchanged by this. Because her passing is to be a natural and peaceful transition of old age, doesn’t mean it will not knock you down. And you must not expect yourself to rebound, as if from an easy thing. This is no easy thing.

    Whatever you decide to write, I will decide to read. So if you keep doing your stuff, I will keep looking for your name.

  • tranio

    My mother died about 8 years ago. She knew I was coming over to visit, I live in Canada, but she died as I was travelling. I sometimes wonder whether she passed knowing that I could tidy up all the affairs, funeral etc in my scheduled visit, so she would not be a burden to me in her death.
    The one thing I remember vividly is realizing that I am now the oldest member of the family.

  • My deepest sympathies.Nearly everything has been said. Be with her at the end,if you can,but don’t be alone,it is unbearable,have your family with you. You will need each other.

  • Dom

    I’m flabbergasted. I’m in exactly the same situation. A mother, 93, 94 if she lives till May (which she probably won’t), home bound for the past 3 years, bed-bound for the past 8 months. I fully expect her to die sometime before the end of January.

    I can’t tell you how much I feel for you. This is, without a doubt, the worse time of my life, and I am sure it is the worse time of yours as well. The only thing I can say is, stay strong. That’s all I’ve been doing.

  • Nick Timms

    Brian, my sympathies to you.

    Three months ago my wife and I spent the final 10 days of her father’s life waiting in hospital for him to pass. He had had Parkinsons for 9 years and the last 2 years had been extremely wearing on all of us especially my wife’s mother who is 75.

    My own father died 20 years ago of brain cancer, just two weeks before my son, who is named for him, was born. I recognise all the feelings and events that you are describing.

    For the sake of everyone involved I hope that you are able to keep your mother at home right to the end. The experiences that I have had with hospitals have not been good. At a more appropriate time it could be interesting to have a debate on this aspect of how we deal with death in the UK.

    Best wishes

  • Brian,
    Best wishes. What you wrote about “taking over” really struck a chord with me. My Gran got Alzheimers and she turned into a child. My wife’s Gran is going the same way. On Christmas Day she must have asked “Who’s looking after my pussy” 80 times. Well I am and the missus. And yes, she does call him a pussy*. There is humour in the situation. There has to be otherwise we’d all go mad.

    It sounds cruel but I have laughed as well as wept over Alzheimer’s. My wife’s gran was… Well you’d have to in modern terminology call her an executive PA for Metro-Vickers. She was in charge of negotiating with the unions at a plant that employed 20,000 and by all accounts she terrified the shop stewards. She is now reduced to sounding like Mrs Slocombe. It’s truly tragic.

    PS. She also knew Barnes-Wallis and was at the initial tests of the bouncing bomb. Barnes-Wallis annoyed her because he was somewhat absent-minded.

    *He’s fine. he has a huge garden and a gas fire and lots of toys and two full-time servants. He even (a Victorian tradition) gave his servants a gift on Boxing Day. A dead blu-tit was not exactly what I wanted but seeing as Timmy doesn’t have a bank account and, like the Queen, doesn’t carry money a dead bird was all I was likely to get. It wasn’t wrapped either but then that’s because Timmy doesn’t have opposable thumbs.

  • All the best Brian, I hope that she departs without unpleasant snag and I am sure that your presence will ease and relax her passing. And I am very, very sorry.

  • Elaine

    Brian, Nick and Dom,
    My thoughts and prayers are with you. I went through the same with my mother just a little over 3 years ago and my father a little over a year after that. Thankfully their minds were sharp as ever right up to the end.

    The best advise I was given was get the paperwork in order now and don’t leave anything unsaid.

  • I will pray a decade of the rosary for you and your mother tonight, and ask for strength for you and her and your family.

  • I don’t pity your mother at all, Brian. On the contrary, I very much respect her, not least for having raised the sort of children who are willing to help her through this strange late stage of her life, just as she presumably helped all of you through the earliest stages of your own lives. And I respect you, too, for writing about these experiences with dignity, clarity and courage. Dying is a subject about which all of us will have to learn something eventually, like it or not, and posts like the one you’ve written do a lot to make the whole subject feel more immediate and real, if not much less mysterious.

  • the friendly grizzly

    Your mother is a slightly older contemporary of my mother. She turned 88 about two weeks ago. I am fortunate in that her health seems very good, her mind is just about as alert as it was 4 decades ago. She still drives a car with considerable skill, and the car she drives (Chrysler convertible) shows how young at heart she remains.

    I also fully accept that she likely will not be with us all that much longer.

    In both yours and my mother’s case, a full life has been led, and they are to be envied for it. They saw much in history, inventions, and progress.

    My hope is that your mother’s eventual passing is as uneventful and painless as possible.

  • Midwesterner

    Brian, I have been thinking about posting on this topic for some time. Via email conversations I was aware of at least six members of the Samizdata community that are or have been to various degrees caregivers for relatives. This article and thread has added several more to the list. Some of us are/were sole caregivers. So now I know of at least eight (curiously, overwhelmingly male so far) members of the caregiver community who are familiar names to all regulars. This is such a very high number compared to the people I meet in day to day life that I wonder if there is something about Samizdata or our philosophies that draws a connection.

    I have been through this three (my grandmother and both parents) times, one of which is still ongoing. As a sole caregiver for someone with rather extreme dementia from a stroke, I have been unable to think clearly for long enough to post coherent articles (or even comments anymore, it seems). But perhaps I should be posting articles on caregiving. I wonder, how many posts on the topic we (I am trying to volunteer you) would need to promise to Perry in order to warrant a category for caregivers?

    Between getting and giving advice, occasionally venting frustration and for discussion of specific issues, I’ll promise one article a week for at least six articles. It is possible it could be a lot more than that. I started a list of topics (some of which may be combined) and very quickly had 24 different topics on the list.