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Wednesday, September 5, 2012

The bus to the past

I am not old, except perhaps to someone under thirty, but because of my condition, I now have to put up with many of the frustrations of the ageing. 

   I know I've said this before, but there's new depth to this understanding as the months I was expected to live have now extended into years, and there's no clear end point. Please put up with a little repetition if you remember I've said something like this before. Your memory is probably a good deal better than mine for things that happened recently.

   When I got this disease, I thought, if there were any benefits, one was that I'd escape the trials and rigours of old age. What I discovered, to my surprise, was that I haven't evaded them at all. They've just been compacted in time. In addition, I've been destined to experience them earlier than most in our fortunate society. The combination makes resistance to this change set in all the more deeply.

   This makes it possible for me to understand all too well what was never on my radar until I got a taste of it.

   Let me give you an example. It's a bit scrambled between separate things that should be sorted out, but here you have it.

   We've all seen the movie trope where someone sits down by an old lady or gent at the bus stop, waiting patiently for the bus to turn up. They get to talking, and it turns out they're waiting for a spouse who's been dead for twenty years.

   The dear old thing has wandered down the street, 'running away'.

   'They're just seeking a bit of attention.'

   They're not. What they're seeking is the exact opposite. They're craving not to be noticed, helped, or, as they may feel, 'spied' on, even though it's for their own good. In good nursing homes, people are monitored constantly for the best of reasons, but it may be hard for the oldie to see it that way. Even if they do, it exasperates. These people just won't leave me alone.

   They're running away from attention. It's not being alone that matters. They want to have power back over their lives, even though that's impossible. They want that spouse to be on the bus, and to go back together to a place where they had the control they were used to for their entire adult lives, until somehow it just disappeared. They want to sit in their own kitchen over a cup of tea made exactly as they used to, or, even better, or a glass of wine and some good cheese, and talk about nothing in particular with the ones their lives revolved around. The way life used to be.

   If in the real world they live in a place with care professionals, they don't want to return to share that little room with some stranger whose name they keep forgetting and, you never know, might steal their teabags or tissues. They don't want to be talked to like a child by the cheery young nurse.

   They want a return to a world that's gone forever, but there's always hope at this bus-stop.

   All the care and attention showered on them by their loved ones cannot compensate for that loss of who they were, especially if that loss includes the death of a partner, or the need to be separated from them to go somewhere else for heavy-duty care. So they tell their tale about who they're waiting for to the person at the bus stop, and the Good Samaritan realises he or she needs a loved one to come and pick them up. By one means or another, it happens, and the anxious daughter or son or carer rescues them and takes them back to safety; that comfortable prison where others make all the decisions. Mealtimes, food, medications... the relentless drivel on TV. Clothes, even.

   They don't protest when the rellie arrives; not much, anyway. They know that bus to the past they've been waiting for is too late again to beat the intrusion by the present. Resistance is futile. They go off meekly. It's been an adventure, and they chose it every step of the way. Till this point anyway.

   Attention is the last thing they want. I'm not at a similar stage yet, though I feel cramped by restrictions that I know simply can't be avoided. They're necessary, self-imposed or imposed by sheer circumstances. Without them things would descend quickly into chaos. All of us are locked in to this inevitability. Each has an inescapable but different burden, till that end point that defines itself.

   I know what the oldies want. I want it too, but it's impossible. This bus-stop world is locked in fluid, strangely static time.

   Ah, the Time Lords. Dr Who can do it, but Dr Wright can't. There's no Tardis at the bus stop. Nor, of course, should there be.


  1. Denis you are talking about 'attention' when what you mean is 'helplessness, and lack of control'. Exceedingly frustrating - especially if you dwell upon it in advance. All I can say is that it is obvious that you are surrounded by very worthy loved ones, and that what you feel might be a burden is in fact something they regard as a high honour.

    Ask them. See if I'm not right.


    1. Yes, on 'attention' that was exactly my point. Having your life taken over by others, for the best of reasons, gives you no choice but to yield control. No-one knows what that's like until it happens to them.

      I am surely surrounded by extraordinary loved ones, who make great sacrifices to ensure my comfort and continued survival. There are others who would gladly fill that role too, which is a comfort as well.

      I can't say, because you have to be in my place to know how it is this end, how much of an honour it feels like on the giver's end, but I know it is a duty that is fulfilled without hesitation and with unconditional love, and that way I can bear being the subject of critically needed attention.

  2. 'Meet Joe Black'

    Be selfish, my friend...
    Time: minutes, days, weeks, lets not get encumbered by detail, what matters is that I stay interested.

    As always, thank you.

    1. And I thank you, heartily, for your concern and for this amazing reference. I have never met Joe Black, though I've met a few Joe Blacks. I have got to see this movie. Where have I been all its life?

      The thing about life is that it is full of Black Holes that you never knew were there. Like Joe Black Holes?

      Drew: It's just life, Quincie. Wake up and smell the thorns.

      That too. They're attached to roses, after all.

  3. Thank you. You write so meaningfully. I know from experience that love and trust help smooth these sadnesses as well as they can be smoothed. Both the giving of and accepting of help are equal acts of love and trust.

    But I needed your piece today for something a bit different. I AM old but I am lucky enough to be pretty fit at this stage and find myself having to help my much older sister in law who lives close by. There is no love here but almost forty eight years and a great deal of interdepencence when our brother/husbands were alive and since, should count for something. She is not coping. She knows it and to some extent resents the fact I have to help. I know she can't help it but I find I resent the fact she lets me down, messes up my days and reminds me of my own future (although I don't resent actually doing stuff). You helped me feel some of her emotions. I will be nicer. I already feel kinder. Thanks.

    Anne Powles

    1. As Julie said, beautifully put, Anne, and reminds me that receivers of care also have to see it from the others' points of view as well, as long as we have the metal capacity to do so. I know those who face immense difficulties caring for chronically or terminally ill spouses and/or children, and of course my own sisters' time with our mother, and your experience with your mum, Julie, do it with love. Now I am reminded that there are others who have a personally felt and unavoidable duty of care for those in a different category – those who for whatever reason may make themselves unlovable or never were easily loved. They still must be cared for.

      I think with your honesty, Anne, you've accepted that it's not a matter of pretence about the reality, but how things are, and you shouldn't feel any guilt about that [I hope you don't]. As you say, it's not doing things, it's how easily and thoughtlessly on the part of the other it can muck your life about and make you feel resentful.

      It raises the whole issue of how governments allow or force family to accept responsibility for those in the family who need help, and where our priorities as a society are. Carers have no choice but to look after others, whether loved or unloved. The harsh fact is that most of us living in normal healthy families will never quite understand this, and maybe even resent large amounts being spent on health/aged care, until as each eventually does in the normal course of time comes to face the deficiencies head-on, and only then start asking questions. It's too late then because another 'healthy' generation has acquired political and economic power.

      And besides, we need 4 billion dollars to buy a few dodgy drones to police the coastline, don't we?

      Many thanks, Anne.

  4. Anne, you've written this so well. Perfect words on love and trust at the start. Then you so honestly express the difficult situation you're now in. I hope you don't mind my saying that it would be good if you had days or times that were all yours, to see your friends, do what you love doing. As counsellors say, 'compartmentalise'! It's so different when it's someone you really love that you are caring for, but everyone's human, and both 'carer' and 'cared for' will chafe at the situation even then.

    Denis, one thing that upset my mum a lot was that she wanted to do something for me, make ME a cup of tea..I always said to her that by being here with me she was giving me what no-one else could. It was true. Who cares about cups of tea? It's the love and sharing that you miss when it's no longer there. She did so much for people just by being who she was, as you do, too. And hey, you still do things.. but small independences really do matter, that's for sure. Do everything you can, even if you do spill stuff (don't fall over, but!)

    JulieM xx

    1. Julie, you were wonderful in your care for your mother over those years and no doubt that story of care is repeated daily in countless homes around the world. You did a fantastic job.

      It's funny you should mention the cup of tea because it was one thing I made for Tracey every morning of our lives together, and I can't tell you how much I resent not being able to do it now. Yes, I do do it sometimes, increasingly rarely, and weave my way to Tracey in the lounge with the cup in my good hand and hoping like hell I don't lose balance, but I know it's hard for her to sit there and allow me to deliver it to her.

      That's me, waiting at the bus stop with cup of tea in hand, I guess....

      Thanks for your thoughts. They're always meaningful.


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