It is some time since I put pen to paper in terms of my experiences with my Dad and his progressing dementia.
However, it is wearing to write and even dwell upon the 'darker' side of this particular moon - and in truth this is undoubtedly my reason for such a lengthy silence. In spite of that, this social media post today has rather cajoled me into expanding my observations into something more substantial.
"That daily moment of trepidation when my Dad first comes down and I discover what reality and persona his day has started in. There's no pacing and leading - just the allowing of his dementia to be played out amongst the logical levels ...."
As I've written previously, the biggest issue with his symptoms lies in the area of behavioural temperament. There are times when the normal temperament of his identity gets triggered into a place of instability. Now these triggers are things I am endeavouring to recognise as much as I can - so I can react in a "best possible" way. "Best possible" both for him, me and anyone else he comes into contact with.
Stability - for him, this boils down to a number of ground zeros. The main one is his environment.
Environment
When he recognises the familiarity of his physical surroundings then there is no confusion. Confusion can lead to unanswered questions, growing frustrations and regressive and retrograde behavioural triggers.
When he recognises the familiarity of people within his physical surroundings then, again, there is no confusion. There are no triggers.
When the interactive behaviour of people within his physical surroundings leads to confusion, then the triggers can again be fired.
I have stressed within above, because he is not affected by anything outside his perceived boundaries. This means that looking out of the gate at the world, people, traffic, weather etc going past is just part of watchful curiosity; curiosity at things beyond his perceived boundaries. Here no triggers take effect.
So how would he react to being taken out of his environment - even by someone familiar?
Let's say I was to ask him if he wanted to go out for a drive on a nice sunny day. Likely answer would be "No" - and there the subject would end. My purpose for looking after him is not to force him into doing something against his will - even though it would be a "nice" thing for him to experience once in a while. His immediate resistance and reactive frustration would be enough to trigger a fairly substantial behavioural and persona shift.
In the 10% possibility that he might say "Yes" there are also caveats. It may be that exposure to quite a long string of unfamiliarity, would build up enough confusion to fire off triggers. It may be that the triggers are delayed by several days - and then fire into his consciousness at random times in the ensuing period.
So how would he cope with being in a home amongst unfamiliar people, in an unfamiliar environment, and having to be part of an institutionalised lifestyle? I think you can draw your own conclusions.
The other stability is bodily.
I have discussed with his 'caseworker' at the age-related community psychiatric team, the possibility of medication for the behavioural and persona shifts. The thing about medication is there are more downsides than benefits - and tinkering with his neuro-chemical balance is likely to do more harm than good. He has spent a life being medication-free, even for headaches, so the side-effects of the drugs alone would probably cause him undue stress and discomfort. And of course, if he found out what was really happening he'd be quite right in believing that I, we and the world were trying to poison him. No - that's not an option.
Other Logical Levels
So with an inner and an outer stable environment, he is literally himself - with all the attendant behaviour patterns linked to his identity, his persona. He also maintains all the beliefs and values, skills and capabilities, that have always been part of that identity.
He might occasionally become slightly frustrated (as we might all do) when he drops things, knocks things over, spills things, forgets things - but these frustrations are not ones of unfamiliarity or outward interference; they are of his own occasional and temporary physical and mental shortcomings. They come - they go.
No, the triggers, at the moment anyway, seem to all lie at the level of environment and behaviour.
Consequences
The consequences of triggers can sometimes be ferocious. Occasionally they are physical; threatening to punch me or throwing a glass have been the worst - and although I'm wary of, I haven't yet hidden, the cutlery and the knives in particular!
Generally, the ferocity is verbal; threatening language, bad language, insulting langauge, accusing langauge.
It is all designed to elicit some form of response - perhaps a physical counter, although usually a verbal response. This response can be stumbled into quite unwittingly, when the trigger has already happened but I've not been aware.
He appeared one morning and, before he'd seen me, he encountered an envelope with the surname "Wright" on it - but with a first name he did not recognise. This confusion, added to an already surly demeanour, was leading into another behaviour and another reality. As I was saying "Hello" to him he was demanding to know who this person was and what this envelope and contents were doing here in his house. I blundered unwittingly into replying - which was just the wrong thing to do. I then received several minutes of the most irrational and misplaced vitriolic comments and accusations aimed at me personally - all designed to elicit even more reaction.
As he walked away after saying 'his piece' I walked silently away in the other direction. He violently slammed a couple of doors as he went - I, trembling somewhat, just took stock of what I'd experienced.
The Way Back
The effect of 'disengagement' is immediate, and then there is a period of 'recuperation' which can be anything from 30 minutes to several hours. In this recuperative period he is to be left on his own - literally to reflect or, to use an more old-fashioned phrase, to 'stew'.
Following the recuperation or even during it, it can be seen that he is regaining familiarity with his environment, and through that there begins the way back to his usual, normal self. In this recovery phase he quite often is aware that has 'done' something wrong or out of character - even though he cannot remember what that is. It's as if he's become aware that people are avoiding him for a reason, and his behaviour was the reason. He may even go through an act of 'contrition' or 'cleansing'; and this may take the form of tidying, cleaning, sweeping, polishing or something similar. Certainly something he wouldn't normally do without good reason.
Once he's back it's as if the whole episode had never taken place, or, if that inkling in short-term memory still resides, he will be noticeably 'extra nice' or amenable!
Walking the frozen lake
So, recognising triggers and patterns are the way forward at the moment. Hence that "daily moment of trepidation" I quoted previously.
In metaphorical terms I can best describe it as you have to walk every day on a frozen lake, in the knowledge that the ice is thinner in some parts than others. You don't want to fall through the ice if you can help it because it is unpleasant at best and dangerous at worst. So you look, listen and feel for signs to maintain that level of safety. You know that certain conditions can change the thickness of the ice. You also know that, inevitably, one of these days you will fall through the ice!
Although I've painted a chilling scenario, I'm fortunate in that I've worked enough with the Mind to be able to pilot this vessel towards calmer waters most of the time. And - at the end of the day - life goes on!
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