The importance of Time – revisited…..

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.

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‘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……

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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.

Paperwork for the week ahead out on display on the worktop
Paperwork for the week ahead out on display on the worktop

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……..

"Ok Wendy, that's enough of blogging......TIME to play with me........."
“Ok Wendy, that’s enough of blogging……TIME to play with me………”

 

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

8 thoughts on “The importance of Time – revisited…..

  1. We all are always busy for more time, but if we can keep ourself calm, we will learn, that we have exactly the time we need to fulfill our projects.There is no need to hurry up, when it doesn’t work it’s not the right time.Wendy you have the big project to bring us all the experience we can learn about you and your disease.And you have the time for doing it.xxx💕

    Liked by 1 person

  2. I’ve had such problems lately dealing with the frustrations of bureaucracy. A combination of intense exhaustion and the feeling that I’m banging my head against a brick wall. I have an intense fear that my time will run out and my local authority will just have succeeded in delaying until another voice goes silent. I know these frustrations are shared, as even Kate Swatter and Agnes Huston have told me how it upsets them to hear of others still being met now with the same negative experience at diagnosis that they went through all those years ago. Thanks for being strong for us xx

    Liked by 1 person

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