Published on Saturday 19th of September 2009
I have just read a touching segment by Tom Kitwood in his book 'Dementia Reconsidered: the Person Comes First '. Tom says that after 'spending time in settings that epitomized the old culture of care, with its malignant social psychology and pervasive neglect, I attempted to express, imaginatively, something of what the experience of unattended dementia might be like.' Here it is:
You are in a swirling fog, and in half-darkness. You are wandering around in a place that seems vaguely familiar. And yet you do not know where you are; you cannot make out whether it is summer or winter, day or night. At times the fog clears a little, and you can see a few objects really clearly. But as soon as you start to get your bearings, you are overpowered by a kind of dullness and stupidity. Your knowledge slips away, and again you are utterly confused.
While you are stumbling in the fog, you have an impression of people rushing past you, chattering like baboons. They seem to be so energetic and purposeful, but their business is incomprehensible.
Occasionally you pick up fragments of conversation, and have the impression that they are talking about you. Sometimes you catch sight of a familiar face. But as you move towards the face it vanishes, o turns into a demon. You feel desperately lost, alone, bewildered, frightened.
In this dreadful state you find that you cannot control your bladder, or your bowels. You are completely losing your grip; you feel dirty, guilty, and ashamed. It’s so unlike how you used to be, that you don’t even know yourself. And then there are the interrogations.
Official people ask you to perform strange tasks which you cannot fully understand: such as counting backwards from one hundred, or obeying the instruction: ' If you are over 50, put your hands above your head'. You are never told the purpose or the results of these interrogations. You’d be willing to help, eager to co-operate, if only you knew what it was all about, and if someone took you seriously enough to guide you.
This is the present reality: everything is falling apart, nothing gets completed, and nothing makes sense. But worst of all, you know it wasn’t always like this. Behind the fog and the darkness there is a vague memory of good times, when you knew where and who you were, when you felt close to others, and when you were able to perform daily tasks with skill and grace; once the sun shone brightly and the landscape of life had richness and pattern. But now all that has been vandalized, ruined, and you are left in chaos, carrying the terrible sense of a loss that can never be made good.
Once you were a person who counted. Now you are a nothing, and good for nothing. A sense of oppression hangs over you, intensifying at times into naked terror. Its meaning is that you might be abandoned for ever, left to rot and disintegrate into unbeing.
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