Dementia Diary Revisited

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!

Throw Caution to the Wind

There’s a generally recognized notion that when we “throw caution to the wind” that we are following a carefree, bold or daring course of action.

Of course, like many things within our common parlance and phraseology, there are built-in presuppositions – presuppositions that the language of our society uses to mould and shape us and our understandings of how the world ‘works’ and how we can steer a path through it. Now, even that ‘steer a path through it’ is a phrase laden with more presuppositions! So as you can see we’re continually being bombarded as potential captives, victims if you like, of our language – the language we use to those around us; the language we use to ourselves; the language we use to code up our index of experience.

Captives and victims only remain so through ignorance and a lack of questioning. The kind of self perpetuated cycle as engendered by R.D. Laing’s quote:
“If I don’t know I don’t know – I think I know. If I don’t know I know I know – I think I don’t know.”
Once we break the shackles of trying to understand that quote, by realising that our thinking has got in there and distorted the intellectual and the intuitive, we are then free to move on - knowing that we have gained a position of dominance over our inner language.
If we are dogged by our thinking, then most of that is down to our inner language. Dominating, having power over, our inner language makes our interaction with our thinking something altogether more harmonious.

So – throwing caution to the wind – let’s examine some of the presuppositions there; some of the things we have been led to believe perhaps until now.

Basically, the assumptions are that there are things called caution and wind, and that caution is something we can throw, and that wind is something away from us in order for caution to be thrown to it.
Once we are familiar with, and accept our usage of, this phrase then these basics are a given. It is what is going on behind the ‘givens’ that usually makes us yield without a fight.

Back in the ‘good old days’ of the hunter-gatherer they also knew about throwing, caution and the wind. But the words meant something different back then, for life then was all about survival – survival of the fittest. And we all know that being the fittest wouldn’t have sat well with the notion of having our modern ‘cautious’ mindset. A cautious hunter-gatherer wouldn’t have survived, he’d have starved. The smartest hunter-gatherer was the survivor!

Caution

The first is the idea of caution. It is a mental construct, like confidence and courage. Of course, it is a label we use to signify a particular course of watchful physical action, and that’s quite OK. However, because it is only a label, we then go and tag the ‘doing’ label onto our thinking; and it is here where it takes on the persona of the mental construct. It builds a mindset around itself and then becomes one of the many programmes we run in our lives. We become cautious, through our thinking, which then translates into our doing as well.

A watchful person will walk along a very narrow mountain ledge taking note of all the incoming data he needs to notice. He’s a cautious “do-er”.
A person with a cautious mindset already has a load of perpetually present data in his in-tray that he churns around every moment of every day – and when HE is required to walk along that same narrow mountain ledge, his in-tray becomes so overloaded by the same incoming data that he either a) fails to notice something crucial to survival, or b) he is paralysed and cannot move.
Now most of us are familiar with the phrase “feel the fear and do it anyway”, and this is a great maxim for people with in-trays not too peppered with caution. There’s enough room in their in-trays for them to deal with all the incoming data in a proper and sensible way.

In order to dismantle some of the elements of a cautious mindset that have been building up over the years, take a metaphorical look at the mountain ledge. For each and every one of us that mountain ledge will be different, and some may not even see it as a mountain ledge. There will be, however, some inner representation we have about caution, and it is that representation that we can change – through creative, imaginative manipulation and through changing our ‘language of caution’.
Just have a look at anything you are cautious about, however insignificant, and see it from a different perspective. Feel the fear (which is really anxiety) and use that ‘Dr Pepper’ phrase, “What’s the worst that could happen?” Move your caution around, find out where it lies at a metaphorical level. Often the edifices of such mindsets are built on shaky foundations and so even just removing one brick will cause the whole structure to fall.

The Wind and the Throw

Next is the idea of the Wind. When I say the word wind, what comes into your mind? Is it an air, a vapour, a breeze - light or stiff, a gale, a storm, a hurricane?
All wind is a movement of air, brought about by a relative difference of pressure between two points. This is the same whether we are comparing weather systems, or the mere act of waving a fan. All wind has motion in some particular direction.

So when we are throwing caution to the wind, it might be a good idea to ascertain how that wind is moving relative to us. For we would want to make sure that the wind carried the caution away, after all, wouldn’t we? I once said this to someone and they came back with, “But isn’t that being cautious about throwing caution to the wind?” To which I replied, “No, it’s about being watchful in the act of doing, rather than being cautious in the act of thinking.”

How important is the Throw in all this?

Well a throw tends to come out of a hand, so there is an assumption that the caution you are looking to throw can be placed into the hand that throws it. How we put it there is now a matter for creative and imaginative conjecture.

There are many of us who can, with direction through altering our conscious awareness, place representations of feelings, sensations, ideas, notions, mindsets and states of mind into a different location. So ‘plucking’ caution out of our minds with our hands, and then putting (or throwing) that caution somewhere else is a very practical, rather than a distant, possibility. That is the way with all inner constructs, curiously enough – we’ve put them in there, or allowed them to be put in there, and we can just as easily get them out.
“Oh that’s rubbish that can’t be proved!” come the cries from the sceptics. I defy anyone to take the brain scans from an optimist and a pessimist and prove which one sees the glass half full and which one sees the glass half empty. However, in the head of each one of them is a representation of that metaphorical glass and liquid – a representation that is “pluckable” in some way, shape or form!

Now the last thing we need to ensure when we throw caution to the wind is that we don’t throw it into the wind. If the wind is strong, or if we are moving fast, then that caution is going to come right back and hit us – probably full in the face! Essentially, what we are talking about here is risk assessment, where caution throwing is concerned. We just need to be mindful, watchful when we are ‘doing’ the throwing – not just throw it with total abandon. Be aware of the conditions and use them wisely.

Who Dares Throws

I mentioned earlier about the ‘smartest’ hunter-gatherers being the survivors – and the same applies today in many ways. Understanding the mental constructs of risk and caution and applying them with conviction are things we meet on a daily basis.

In the Olympic Games we witnessed many instances of risk and caution played out on the sporting stage for true and noble reward. All competitors understood the real meaning behind “throw caution to the wind”, and the more successful managed to pluck out just the right amount of caution and threw using the wind. We discovered in the Games that there, above all, it wasn’t about “Who Dares Wins” because they weren’t all winners in the sense of coming out on top. However they were ALL daring, for being an Olympic competitor is not for the faint hearted after all!
No, I believe it is actually about “Who Dares Throws”, and here I mean about throwing caution OR indeed anything we’ve let into our lives that is holding us back or getting in the way of our ability to enjoy it.

Deciding to throw is not enough either – and there were athletes who were deciding very well, and got all the way to the games and then didn’t throw when it came down to it. Something got in their way. Those who were smart, however, gained true success and reward.

Smart will always outrun caution because smart recognises what caution really stands for and uses the wind really well. And for caution you can also read anxiety, regret and quite a wide range of life’s obstacles.

So – be smart, throw caution to the wind, and remember - no winner ever first dared not to throw!