I was idly searching the internet for stuff written on Alzheimers and found this in a research abstract: the sequence of deficit acquisition was heterogeneous.
Meaning that everybody is different. And they can’t predict and you never know quite what is going to happen next.
They could have written much the same about Anna.
‘Impairment of semantic memory, visuo-spatial and attentional abilities eventually developed but the sequence of deficit acquisition was heterogeneous.’ Absolutely.
So we have something here that is progressive, irreversible, but also erratic. A good candidate for using the perspective of complexity theory: the individual like any system in a state of bounded instability on the edge of chaos. Sometimes it seems that it takes less than the beat of a butterfly’s wing to change Anna’s mood.
In a fast-moving world measured in nano-seconds it is difficult to plan at any time. The instantly changing world of mobile phones for the many and blackberries for the few has made a virtue of living in the moment. Dementia is about living in the moment but for different reasons – because of the difficulty of accessing information.
How do we plan for a disease like this? Six years after the diagnosis, eight years after we started to notice that something was going wrong, and years before that, if we had known, when there were processes getting under way to break up the connective patterns of Anna’s brain., and yet still we find it difficult to have a coherent plan.
My brother Robin says that we are playing catch up and he is right. We make changes to the house, as Anna experiences a new difficulty. But we don’t seem to be able to run ahead and makes the changes ready for her.
The help we have received from the occupational therapists making their assessments has been pathetic, to be honest. But there are reasons for this. First, they have a disability model, which is helpful to some extent, but it is inflexible, it does not take into account that this disability is fluid, on the move all the time, will be different from the time of referral to the time of assessment to the time of introducing new aids. This is a professional rigidity, that does not work with dementia. Second, there is a systemic rigidity, so that the referral process itself is linear, where one and one only response is allowed for any given stimulus, and then the case is closed.
Anne the carer is upstairs with Anna in the bathroom. She is brilliantly pragmatic and as long as Anna can still use the old bath, they are holding on to her sense of her old identity and independence. ‘I don’t need any help’, is her cry of freedom.
A wheelchair is under wraps under the stairs. Anna is virtually housebound but she does not want to be an invalid.
I am learning about her increasing difficulty with crossing thresholds. I knew she was uncertain with steps and ledges, seemingly lacking the sense of perspective that can distinguish a flat surface from a cliff. So we have put in rails and have ramps on order. But the difficulty is not physical – she can walk as well as you and me. The problem is psychological and neurological and the threshold feels unsafe to her, even the flat floor going from the hall into the dining room, where she may stop for several minutes at a time, sliding her foot forward and back, unable to be reassured that she is safe.
So we continue to improvise, taking our lead from her. It is no good our having ideas, if they don’t work for her. Robin will build a wooden ramp, and we hope that Anna will soon feel safe to go into the garden again – it is looking good for her.