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Living Inside the Dementia Bubble

Posted May 28 2011 9:34am

Diary #1

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 ‘scrambled’ 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 smooth 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 in terms of behaviour 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 – i.e from the 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 metaphor of reference comes via Jamie Smart’s interview with 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 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 is 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. It is great for him physically as the playing exercises both his hands and feet – and his digital dexterity is quite remarkable for 92. 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.

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. 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

Diary #2

“Life is only worth something if you live it every day.”

Whenever we have family visitors staying or friends visiting, my Dad generally responds to the question ‘How are you today?’ with the cheery reply “I’m still here!” These are the words of a very in-the-moment man who, now 92, can still raise for us all some of the most amusing and meaningful comments.

This particular Sunday however, he came out with a secondary observation which had us all speechless and rooted to the spot for a moment or two – “Life is only worth something if you live it every day,” he remarked.

This affirmation from the high and lofty pinnacle of strong beliefs and a huge chunk of experience almost flies in the face of his advancing dementia condition and somewhat displaced memory chronology since 1946. It also gives us a clue as to how he got through the extremes and deprivations as a World War 2 prisoner of war for 5 years in Poland, having been shipped there after failing to make it to the rescue at Dunkirk. It also shows us how he (like many of his generation) just ‘got on’ with life once the war was over and said very little about his experiences.

Frustrating as his dementia must be on occasions, his “Life & Worth” philosophy seems to very helpful in overcoming those frustrations and frees him up to live in every moment.

He gets huge pleasure from being totally absorbed in either his stamp collection or playing a variety of songs and tunes on the harmonium. This instrument – incidentally – gives him physical exercise for both feet and hands; as well as eliciting music and words from memory that are anchored to other experiences and happenings at the time.

He is never bored, merely moving from one activity to the next as the interest takes him. Occasionally he moves tangentially onto some unrelated activity, and here again he gives it total attention until it is concluded or resolved. He then gravitates back to the ‘waking centre’ by either checking the time, making some tea, seeing who is at home, and perhaps looking outside at the weather, the street activity or the garden.

The random re-connectedness with some of his memories is equally fascinating and surprising for me. Interestingly, during these moments of reconnect I find that by guiding him to pursuing certain “live” threads, he will remember detail vividly – and I also know that this random illumination will be lost once the moment of each thread has passed.

The biggest boon for me, thankfully, is that by projecting into his reality I’m able to be his additional guide, rather like an extended memory or external hard drive! Plus (and its a big plus) I’m not beset by any carried over emotion of my own or indeed any of his (in the moment) emotions such as frustration or anger. Many have described to me the usefulness of this “one foot in his world” and “one foot in my own world” view of reality – and I’m able to be almost robotic with my foot in “his world”.

How intense and time-consuming do I make this? Not overtly so – I also want him to interact with “my world” or “the world” at times, plus I’m happy he can spend plenty of time in his own world at his own ease. The key, I feel, is what I have already described as his “waking centre” – a kind of ground zero set in time and space where he knows there is a reset button which will enable him to set off once more.

Routine and familiarities are important there too as I found out when he awoke from a nap and started looking for something underfoot – something that was clearly part of a ‘dreamscape’ rather than a waking ‘realscape’. I floundered for some minutes until deciding to take him back to his “waking centre” – and once there his continuous loop of looking for the ‘thing underfoot’ melted away in the gift of the next new moment of life!

Every day is full of new learnings – and is certainly worth it every inch of the way

Diary #3

With my Dad’s dementia condition, the “waking centre” is like a centre of reality, where he’s able to recognize everything as it is right now, and which he is able to use as a ‘ground zero’ for proceeding with the activities and the tasks that fill his day.

Watching out for and managing the flash points

In terms of those daily activities and tasks he is fine and well, provided all things proceed smoothly and unabated. If there is an interruption in the sequenced structure as he is going through it, then there is like a fork, a junction, a crossroads or roundabout in his path – and consequently this a source of questioning and potential confusion. He then tends to either make a choice or continue on a loop around the roundabout depending on the complexity or the question.

If he is to make a simple choice – say, to put something away in what he thinks is ‘the right place’ – then things proceed and he is out of the loop.

If he feels that he can’t make a choice because it is complex, or confusing, or if that loop on the roundabout provides no answers for him, then he has some emotional responses to the confusion that vary between humour, anxiety, frustration, anger. These are the ‘flash points’ that I do my best to ‘manage’ for him in order to bring him back to the “waking centre“. There is a degree of dependency on my being with him, or noticing his confusion quickly, in order to help this happen more readily. Occasionally this will not be the case, and these will be times when (depending on the complexity of the questions that arise for him) matters can go a bit haywire.

One of his sisters and nieces came to visit us yesterday which, while being wonderful for him to see them, actually got him into one of those loops of confusion. The confusion was that the seeing of them and hearing their voices prompted him to think about them – and then talk about them as if they were not there! The only thing was – he talked about them to their faces which was initially quite a challenge for them! They saw the funny side which was great, and eventually he was able to put 2-and-2 together!

Another flash point happened this morning (probably brought on by the extra levels of cognition he had to bring to bear the day before). He had woken from (presumably) quite a deep sleep and was looking for my mother, who has been dead five months, because her bed was empty and he wondered why she had already got up and not ‘given him a nudge’ to wake him up. Detaching myself from the various levels of emotion this whole episode carried, I was able to engage with him and guide him back towards his “waking centre”. Once he’d arrive there, I knew the rest of his day would proceed in the usual way.

Vitamin B-12

A deficiency in vitamin B-12 tends to exacerbate memory-related dementia. Over the last couple of weeks his GP Surgery has been ‘catching up’ with his B-12 levels to such a point that he will then only need a shot every 3 months. The difference in the quality of his cognitive recall and short-term memory has been noticeable during this catch-up period and this has been really helpful in broadening his reality base.

Phases of the Moon

Rather like children become more hyperactive when the weather is windy, it seems that dementia sufferers are susceptible to changes in the phases of the moon. A time of particularly hyper levels of behaviour is around full moon, and so when my Dad’s comments and actions are a bit off-kilter then I check to see what ‘time of the lunar month’ it is. Many years ago I remember studying, quite extensively, my bio-rhythms and related it to particular highs and lows, greater or lesser moments of clarity etc. There were lunar aspects of these as well, so I can easily recognize how the balance of my Dad’s own perceptions and moods are affected in this way.

The “Appointment Card’

Going out somewhere has always been a considerable ‘flash point’ moment for my Dad, because it cuts across his daily routine and is something that he feels he is being forced to do against his will. Once he is out of the house and that moment has passed, he is fine – and enjoys the experience. In the midst of the flash point, however, his anger can bubble and boil over into tantrums and florid swearing. However – he has always been a great believer in discipline, respect for professional people, and the requisite order of things (rather than chaos!)

One of the features this brings is the Appointment Card – which I have latched on to as being the means of getting him out to (say) the Health Centre without any undue fuss. Provided I show him IN WRITING that he is required to be at a certain place at a certain time, and that this requisition of his time has authority that is not to be questioned, then he goes willingly. The next trick is to get him out to a restaurant for Sunday lunch by making up a printed ‘Invitation’ – requesting his presence!

Time alone will tell – but it will work better than whatever ways we are attempting at present.

Article by: Peter J. Wright


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