What Makes it All Worthwhile….revisited……

Third reblog of the week from 3 years ago ….I suppose after the amazing words of the man from Pontefract on Mondays blog led me to reblog this one. Everyone needs a reason to do the things they do. The kindness of others is one of my reasons….it makes all the grief, the struggles, the trauma of travelling worthwhile…

 

What makes all the hassle, all the travelling, all the preparation for meeting, events and talks? Basically it’s being drip fed nuggets of information from people who have been affected by what I’ve said or done……it’s the small changes that have happened as a result of what I’ve said. People very kindly send comments through my blog which mean so much and keep me going……..

“I’m no longer afraid”

“Thank you for the insight. It’s helping me to understand how I can help my mum”

When I was diagnosed, I never imagined the poor state of so many things that were dementia related. At the outset you say ‘yes’ to everything, as you think that interest will be short-lived. However, you soon realise that this is not the case. Purely from a personal perspective, you’re not quite sure how long you can manage to do all those things – will your brain deteriorate quicker than you imagine? So you cram everything into a small amount of time ‘while you’re still able’……
Soon you realise, your brain may play ball for longer than you think – you may meet new issues along the way, but you become accustomed to adjusting.

What you also become use to is being listened to and then professionals going off and reverting to type………..when you do or say something and change happens, then it’s worthwhile; however, the most frustrating times are when promises are made, ‘changes will happen’ but, in fact, nothing changes and nothing happens……..

We see and hear this on a daily basis. Kate Swaffer, from Australia and Agnes Houston here in Scotland, are forever saying, ‘We said that years ago’. Yet here we are again, and the only difference? – the same words are being spoken by a different person……..
Words about inclusion, words about language, words about post code lottery services – none of these are new, yet here we are simply repeating what’s already been said many times before…..

I recently spoke to my local Governing board about my dreadful experience since moving into the region. Since that talk the region has finally woken up to the fact that they need a Dementia Pathway and they want to involve me in its design……..yet when I emailed after weeks of silence, I was simply told no date has been sorted to start this process….will this be another case of false promises? – hopefully not….

I often say that rambling on and speaking at events and meetings is my suduko…….well, you know how sometimes you get fed up of playing the same game………….🙄 It’s been an exhausting few months and sometimes you just want to forget about dementia and do normal stuff………..that’s where I am this week as I’ve given myself the whole week off and most of next week…….…….. who knows how I’ll feel next month….…

Instead, I’ll simply chill with Bill……

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P.s today on Twitter, Bradford University released my Graduation speech I gave to the students….needless to say, I’d forgotten what I said, so here it is if you’re interested…..

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.

12 thoughts on “What Makes it All Worthwhile….revisited……

  1. As a relative newcomer to your blog, Wendy, I am enjoying your revisits. Like you, I find it frustrating that it takes so long for new ideas to be properly absorbed and taken up, but it does seem clear to me that quite a lot of things that you have said need to be done, are beginning to happen, and making change. I think you deserve at least a pat on the back for that.

    I agree that was a wonderful speech, and like so much of what you do and say, a real inspiration. Thank you!

    Liked by 1 person

  2. Dear Wendy, it’s always wonderful to reread posts and yet I’m concerned. You have usually reposted when you are having a “rubbish” day or time are you well? Just exhausted? Are experiencing new realities? Whichever, I’m sending strength and affection.

    Your Friend Across the Pnd

    Liked by 1 person

  3. Dear Wendy – I love reading your blogs and I am so grateful that you share so many insights – you are helping so many people but …. you should never feel pressurised to do anything – you deserve a good rest now and again!! Loved your speech too 🙂

    Liked by 1 person

  4. I believe folk like you, Agnes et al make the policy makers think and make policy, but there is the gap at local level. I am finding drip by drip that things can change locally. It takes time to read the documents, network to know who will actually effect change. We each have a role to play, and with more youngsters being diagnosed there should be more pressure being put on LAs. It is a lot less tiring, and I get a kick when something however small is changed for the better.

    Liked by 1 person

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