Not the most sensible thing to do but I’m always curious to know how everyone is getting on but wasn’t prepared for the shock at the recent 24hrs with Dementia Diaries meet up….
I think of myself as being the one helping others last year, I’m sure I did….so imagine the shock this time when it was me being helped – physically and mentally….
August is also a time when my routine of busyness goes out of the window. Worryingly, I start to love simply sitting in my bed in silence and having silent conversations on my iPad . I get used to NOT doing which then makes it harder when something comes along. It’s a vicious circle – if I DO stuff I get exhausted, if I DON’T, dementia takes over……..can’t win…
Looking around at people I know, also living with dementia, it’s hard not to compare. Staring at all the people in the room, I felt like I’m being left behind, or has my dementia taken a leap ahead?
The sheer exhaustion of trying to keep up, trying not to let the words escape my mind before I’ve spoken, hence the banging head that inevitably appears.
I could just sit and let the discussion wash over me, allow dementia to win….but when I’m with people I WANT to keep up, I WANT to contribute, no matter how hard. The price to pay is a couple of days of a banging head in tow.
Physically, my balance has gone totally wonky….Philly’s arm the steadying force down to the campfire and back. Unable to carry my own tray of food. My first thought at looking at the food on offer, was, well I don’t feel hunger anyway, so it’s easier not to eat at all than to have to make a choice and work out how to carry it….but Philly must have seen me and came to the rescue.
Embarrassing? yes….annoying?, yes, sad? Yes, but that’s what lays before me. I’m not used to accepting help, so that’s a new world to me that maybe I just have to accept.
But it’s as though there’s still this old me locked inside my body looking out, often aghast at seeing and hearing what I do and say but unable to stop me, simply observing. I’m even conscious of the old me being that old self sometimes; I’m so aware of my old self inside at times which I find quite comforting.
We often talk inside our heads and I often ask me, ‘What would the old me do’ in certain situations, in order to think as I used to think. The old me is still there helping me from within.
I suppose the time will come when the old me will fade and eventually no longer be there, a sad thought, but while she is, I’ll welcome her with open arms….
Of course, many of our issues are only seen by ourselves or those closest to us, so maybe mine were just more visible this time at Woodbrooke……we all have our own unique challenges and our own way of dealing with them……