It started like this… my dear husband said; ‘I didn’t know you had any black jeans?’ I replied, ‘nor did I, until I found them in my wardrobe!’ We laughed out loud, as I tried to recall when and where I had purchased them. And then I cried. They were obviously purchased in the last 18 months, as I had lost some weight, but there is not even a glimpse or a shadow of a memory of the purchase. I must have tried them on, somewhere, sometime… This insipid invasion and stealing of my world is not only disconcerting, it is maddening.
I wrote earlier this week I have a hollow sense of identity, and after one friend saying this particular phrase has made her think more deeply, my mind has been working overtime. There are more blank moments in my days, and spending more time conserving my energy for when I am with others to give me the best chance of functioning well in front of them. So far, this is still working. However, the inner sense and knowledge that I am losing my identity is increasing, and there is a hollowness about it, and a vague sadness.
This loss of self is not only frightening, it forces me to look into the future, and the thought of getting to the end stage of dementia is quite vile, and in fact rather repugnant! There is a sense of wretchedness about it too.
Many times I feel like a stranger in my own skin; a stranger in my wardrobe, my home, my local shopping centre. The sense that I have plagiarised myself when reading back over my own written work is increasing too, and although I still have insight most of the time, it is definitely a weird and not so wonderful journey. I often wonder; ‘Who am I?’ and this questioning takes over my being when I realise I cannot recall parts of my own world, the reason why I call my story ‘My unseen disappearing world’!
And yet, with each new day, there remains a desire to keep fighting the symptoms of dementia, to reclaim who I still am, and who I was, and to live life as fully as possible. The best thing I have done since the diagnosis is to continue to try to live a normal pre-diagnosis life, and not accept the prescribed dis-engagement given to me. Even though I have focussed much of my energy on advocacy for people with dementia, there are many other engaging and fulfilling activities to fill up my days, so for now, there is no need to provide activities such as Bingo or Montessori. Yay!!!