Dementia Diary

Living with and caring for my Dad and his dementia has increasingly, over the last couple of years, become something of a fertile field for me in terms of understanding the shifting states of our realities.

It started out conventionally with my world and his world, and there were times when our worlds were 'out of sync'.
Because the chronology of his memory, post a certain date, has been randomised or totally misplaced he cannot remember a whole chunk of recent experiences and all things associated with them. The area most affected is short term memory - so in conversations he will repeat things because he can't remember he's already said them, and have a displaced perception of things related to temporal matters such as day of the week, year etc.
At times, when our worlds collided, I found his condition quite an emotional experience for me - saddening, upsetting, frustrating, irritating, and probably some others I've since forgotten!

This then evolved into a second phase, where I gained a better understanding of the 'flash points' of his condition, and adapted my behaviour to smoothe the passage of our day-to-day interactions. At the time I was looking after both my mother AND father, and part of this adaptation also involved helping her to have a greater understanding of what was happening for my Dad. Tough as it must have been for her, especially in emotional terms, she really took on board the things she needed to do behaviourly in order to make their latter times together as pleasant as possible for them both. Throughout this 'second phase' I was still viewing his world from the perspective of my world - ie from the outside outside.

Things then evolved into third phase, where I am now able to project into his world, his realities - and its rather like swapping my set of virtual reality goggles for his. (This referential metaphor comes via Jamie Smart and Dr Aaron Turner, and fits with this experience like a glove.)
The upside of using this bit of engineered facility is that my understanding of how the day to day stuff is happening for my Dad is now very much clearer. It is more open and simple, it makes sense, and all the emotional debris I would encounter back in Phase 1 has absolutely gone. Because I'm in HIS reality none of MY agenda, or baggage, is there to clutter up proceedings or interactions. It's like being able to communicate with him properly again - something I haven't really been able to do for some time!

The downside has got to be in terms of a caveat for me and my 'sanity'. The projection into and switching of my perceptive realities needs to be dealt with on a cognitive level. To put it bluntly - if I feel I am "losing it" then I'm spending more time in his reality than I should be! For as long as my own world is populated with many other people, experiences, interactions and thoughts - then a daily 'stocktake' should keep me firmly centred in my world. For this I do trust my unconscious to intervene if needs be. And if there's something simply and intuitively childlike about that statement then I'm happy with that!

One of the more interesting observations I have of my Dad's memory recall is in musical terms. He spends a lot of time playing a small pedal organ, or harmonium, that we have. Its great for him physically as the playing exercises both his hands and feet - and his digital dexterity is quite remarkable for 91. Mentally, too, it is really useful and his recall and recognition of tunes AND chords and harmonic structures is infinitely better than his recall of lyrics.
Clearly the way he has mapped and processed auditory experiences has not just been different from the other senses - but has also been differentiated between types of auditory experience. Spoken word - and words included in a song (say) - are mapped to a different place from the tunes and musical notes. The only thing that seems to bind the words and the tune together in a song is the 'label' or title.
Interestingly this suggests that (for him at least) songs are broken into words and music - each labelled with the same title - and then mapped to separate areas in memory.

These discoveries and conclusions I will expand into a future blog or article as I am sure they will be of further use and interest as time progresses.

What, on reflection, am I gaining from this very personal caring experience? Well, every day is similar and yet different at the same time! Every day certainly contains the opportunity for more discoveries and insights in a field I am hugely interested in anyway. Every day has a range of purpose, and not just for dispensing care and comfort - it brings me a step closer to my Dad by being able to understand HIS world much more.