Dementia 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, at 91, 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 WW2 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's 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.