The Trigger and The Loop - Dementia Diaries #6

Opportunities are where you take them – and ‘events’ and ‘special days’ are really just that but in name only. In essence a day is a day is a day. Just another 24 hours. As Carson Robison’s song, “Life Gets Teejus Don’t It?” describes it –
“The sun comes up, and the sun goes down – the hands on the clock go around and around. I just get up and it’s time to lay down...” and so on...

This last Christmas Tide was, for me, a whole mixture of new discoveries, curiosities, perspectives, learnings and understandings about conditions within dementia – especially in terms of triggers and loops.

In the build up to Christmas Day, (this year on a Sunday) my Dad would notice all the decorations, cards received, play carol tunes on the harmonium, and often tell the story of how he could sing “Silent Night” (Stille Nacht) in German and “O Come All Ye Faithful” (Adeste Fidelis) in Latin. It took him back his youth and – several times a day – he would launch into song just to enliven the memories!

However, this year, there must have been some trigger – whether deeply embedded in memory, or quite superficial we just don’t know – that compelled him to feel duty bound to attend the 8am service at church on Christmas Day.
The cycle or compulsion kicked in somewhat early, though, and on the morning of Tuesday 20th December – at about 7.40am – he appeared downstairs, dressed up to the nines with his outdoor shoes on.
“I’m just going up to church for the 8 o’clock service,” he said.
“Ah that’s very good, Dad,” I replied. “However, there won’t be anyone there today because it’s Tuesday and Christmas Day is coming up next Sunday.” He laughed it off and added,
”Oh well – I’ll just treat it as a dress rehearsal!”

So far so good! He enjoyed having a much longer day than usual because his regular getting up time is between 10.30am and Midday. The thing was he actually got very tired as a result, and although he went to bed at his regular time (around 11pm) the next day he slept on until much later. On Wednesday 21st December he got up around 4.30pm – somewhat confused because it was nearly dark outside and he couldn’t tell whether it was 4.30am or 4.30pm! No matter though because he was quite happy and chirpy as usual.

Next morning however – Thursday 22nd – he was up and around at 7.15am, getting ready to go up to church for the 8am service. As you can see there was a looped pattern emerging here and as had happened two days previously, he got rather tired from having a very long day awake, dressed and pottering around!

Friday 23rd, as you might have guessed, he overslept, getting up at around 5.30pm with more unsureness as to whether it was really early morning or evening. I found myself hoping that Christmas Eve morning would not continue on the early/late cycle – but it was wishful thinking as on the Saturday 24th he was again up ready for the 8am visit to church!
There was certainly a feeling of building to a crescendo to this, and we talked about us all going to the Midnight service later that day. Through the evening on Christmas Eve we could tell he was thinking about going to the church and as the time got nearer he really began to gather his thoughts (and duties and compulsions – whatever they were). He became more agitated, kept going to the toilet, felt and then was sick, but still maintained that he was going to go. At around 11.30pm he put on his coat and hat and got together what he thought he needed, clearly very focussed and driven, whilst also losing his usual happy daily demeanour.
It is only a short walk to the church and we set out on the journey. After about 50 yards he said he felt sick and we knew it was going to be best if we abandoned the quest and returned home. Poor chap, he was so disoriented that by the time we’d arrived back at the front gate less than 30 seconds later, that he asked, “Where is this, where am I – what is this place?”
We got back inside and after the best part of an hour he was much more back to his old and usual self and so off he went to bed, in a better place but shattered all the same.

And so to Christmas Day!

Well, somehow I knew what was likely to happen, because of the daily cycle, but there was an outside chance that the “I must get to the church” compulsion would override everything. It did not – and so Christmas Day was very definitely a non-event! We’d decided anyway to reserve the culinary festivities until days later when there would be more of us present.

So I was alone for a lot of the day which might have put a very odd perspective on things – if I’d let it!

My Dad appeared just before 7pm, not properly awake and clearly disoriented, distracted, grumpy, cantankerous, on a very short fuse deep within his less than grounded reality. We had a brief conversation in which he made some choice and unkind remarks about our domestic situation in very florid language. I chose not to respond as he was not really with it enough to know it was me he was talking to! He went back upstairs to his bedroom and reappeared around 7.30pm, dressed and ready for something to eat and drink – now back to his normal, regular chirpy demeanour.

For the entire week following Christmas we observed him gradually getting back to his regular daily life cycle, wondering whether the next Sunday (New Year’s Day) might trigger off the get-up-early to go to church cycle again. Thankfully this did not materialise and I’m happy to report now – almost mid January – that he is back on an even keel all round, as are we all!

We had our ‘proper’ Christmas Dinner during the following week when there was five of the family present, and it was lovely, an absolute delight for us all including my Dad.

When he is totally ‘in the now’ it is wonderful for him. So whatever the trigger or unconscious driver was there in the pre-Christmas period, it was no longer present in his everyday consciousness once the day had passed, and he seemed to know it had passed as well. Quite often at other times this is not the case – but thankfully those triggers and loops have been worked through and out and have dissolved back from whence they came!

So what kind of Christmas did I have in 2011? Different – and very, very quiet!!