‘You don’t like me.’
‘Yes, I do.’
‘Then you must be kind.’
I can hear her protesting upstairs and the carer is talking to her quietly. Her screams sound like torture. I make an involuntary move to the stairs and then stop. It is difficult to leave them to it. She is calling my name. Shall I go? I think it is better to let the carer make a good routine if she can. I am late for work: I go up anyway.
These are the most stressful times at the moment. There is something unnerving about her terrified protest at being touched and this is a new thing. It is when there is a new difficulty that it gets stressful all over again.
Most stressful was that year around the time of the diagnosis, when we knew very little of what was happening and what it meant and what it was going to mean. It gets familiar and then, abruptly, different again.
It is the same for everybody, I suppose. Uncertainty is what always makes us fearful, although we are supposed to love change in a postmodern promiscuous sort of way.
But it is easier to hear other people screaming: we don’t hear ourselves except in the echo.
What is stressful about dementia? Sounds like a daft question, but I am thinking what is different from the stress that we all experience in our undemented 24/7 globalised hypercognitive world. It feels more real, for a start.
I have been reading the recent OPUS report on their analysis of ‘listening posts’ and societal dynamics in twenty countries around the world – an apocalyptic vision of ‘the anxiety, frustration, anger, rage and feelings of helplessness and powerlessness that were arising from loss and a failure to cope with a way of life that is experienced as threatening their very identity.’ Sounds like us! But then it makes me think there are some advantages of staying in the world we know, where experience is real enough – even if it is unrelenting in its immediacy At least we can work with what we have got, and not ‘a sort of virtual world where members of society share the illusion that everything is possible, denying the reality that true relationships are not achieved.’ [Organisational and Social Dynamics, Vol. 6, No.1, pp111-142.]
If you want to get real, living with dementia is certainly one way of doing it.