A simple reblog today….I was guilty as anyone pre dementia. I wished for the weekend, wished for the end of the day, the week, the next holiday…..yet dementia has given me a new perspective on time and enjoying now….dementia may be terminal then so is life…so enjoy today and make the most of each moment as no one knows what tomorrow might bring……..and here’s a blog I wrote in 2015…..my thoughts havnt changed….
The fear I felt when I was diagnosed began to subside when I saw that writing was my way of keeping alive and positive and hence this blog was born. My blog and Twitter opened up a whole new world, new communities that have become my friends – some very good friends. I didn’t need many friends before but now I value them all dearly. It introduced me to so many people from all walks of life and all sorts of experiences. I’m not sure if it’s the disease that’s made me more gregarious – I used to be a loner – but whatever caused the change, I’m happy that it did.
Which brings me to the next change – TIME.
‘Time’ has taken on a whole new meaning. I’ve also seemed to have lost the same sense of time as I once had as I so easily get distracted and ‘lose’ time.
Due to the very nature of the disease none of us know how much time we will have or how quickly the disease will progress. That’s why bureaucracy is now even more frustrating as it takes so long to bring about change.So many unnecessary hoops to clamber through……Time’ almost creates a fear inside; a fear that time will escape me and all the things that need changing will still need changing a year from now. Kate Swaffer in Australia, often speaks of the same frustration and the fact that I’m banging on about the same things as she was 6 years ago is very frustrating……
Some days there’s a desperate panic to get everything said or written before I forget – time is more important and I’m now a tad obsessed with cramming everything in while there’s time. Always was highly organised – but now there’s a ‘need’ to be meticulous with instructions, maps & pictures. I have to print out emails and have everything printed and out on display that needs doing for the week ahead otherwise it doesn’t exist.
I need so much more time to get myself sorted. I get confused so easily if I try and go at normal speed
But I suppose allowing more Time and wanting others to give me more Time are simply strategies to enable me to continue happily.
Often all we need is TIME – please consider that if you have a loved one with dementia or who is simply slow at doing things. What does it matter if it takes me an hour to do something you can do in 10 minutes. Don’t be tempted to do it for me simply because it’s quicker as that is ‘disabling me’ before I’ve lost the ability to do that task. Go off and do something else for an hour while I’m taking my time to do something.
I’m sure there could be a lot more negatives if I thought about it but luckily I’ve probably forgotten them – bonus!
One thing I’ve learnt from this year – don’t worry about the niggles in life – in the grand scheme of things – what do they matter…….but TIME still plays heavily on my mind……..