Let’s get it out there…

Melancholia

I’ve been reading one or two blogs by others with younger onset dementia. Thanks to Kate Swaffer http://kateswaffer.com/author/kateswaffer/ for putting me onto these. I particularly like http://whichmeamitoday.wordpress.com/

Partly because Wendy’s in England, closer to home than many. Partly because she writes, like me, to make people aware and to influence change, partly because she puts in pictures, which I must start doing. (Means I’ll have to upgrade!)

In all the work I do to improve patient experience of health care the overriding reason for complaints and comments is to prevent anyone else going through the same bad experience.

I am in a slightly melancholic mood just now. Had a really bad day yesterday, exhausted. One or two forgotten things which I would swear I never knew but am assured I did. Realisation that in recent weeks I have slipped back a little, with more forgets, mistakes, uncertainties, imbalances.

And these trips to other worlds every night, many unpleasant, as real as any day of the week. Some mornings it takes hours to forget them, to re-learn that familiar people have not turned into hated bullies out to get me, or that I am not in a jungle avoiding huge death.

In this mood I wonder whether Wendy’s recent experience meeting other people with dementia at a conference would be good for me too. Whether I ought to find a peer group…but I know there are only a handful of other younger onset people with dementia in my Shropshire.

I helped set up our Shropshire Dementia Action Alliance this year, and chair it. Since starting, I have become the one member with a diagnosis! I sit on several Trust patient experience panels and committees, and raise dementia care repeatedly. I am co-facilitating CCG leadership seminars on how to commission services to put patients in control of their lives and health care. I challenge the Health and Wellbeing Board and CCG to do more to improve diagnosis and care for people with dementia.

I, like Wendy and countless others, am passionate about doing whatever I can to improve patients’ experience of care and of living with long term conditions, including dementia.

It’s what now makes my life worthwhile. It’s unpaid work. It’s what I get up for. And on the occasional days when I have no meeting, activity or event, I find it quite hard not to feel a bit aimless. Especially, in winter, when I can’t sit outside with a cup of tea, or do the garden.

So I also, on days like today, feel sad about my future. When I will be unable to go out to work, when fog will close around me. When I will not be able to find the tea, like yesterday, or lose my driving licence.

I want people to read my blogs, not to feed my ego, but to raise awareness and to get change.

So please, if you feel able to, re blog me, tweet me…

Let’s get it out there.

8 thoughts on “Let’s get it out there…

  1. Good morning George – please be assured that I, for one, read your Blog and pass it on. I know that people I pass it onto also read it and pass it on themselves. It is going to fellow patient representatives and being passed on to members of other organisations even NHS England! So – as I say, be assured that your message IS getting through. I have learnt so much from your Blogs and the ones that you have re blogged and I know that others have too. Keep going for what you do IS important, change will be slow – it always is. There has to be a culture change and it has to overcome fear, but it will happen – it already is inch by inch!

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    • George,
      I feel like often the blog entries many people get the most benefit from are the days when I am having extra troubles — and how that feels (so how their loved one might be feeling) and what I personally do about it. In those ways, as many others, you are a shining example of living well with dementia.

      My husband is good at many many things, but once he took me aside and confessed,
      “I just need you to be my cheerleader”.
      Your blog is so very excellent that until now it never occurred to me that you (like the rest of us) could use a cheerleader.

      I am currently compiling quote “gems” for next week’s blog. Your blog entries have so many gems that it is difficult choosing which quotes are the MOST profound and paradigm-clarifying.

      You are not alone, and I am not alone. Your pain gives others courage to face another moment of another day. Together we can stand … and cheer each other on; “It helps!!” “Don’t let up!”
      “Yes – Yes – Yes!!”
      “Hooray!!”
      “You are making a difference!”
      — Tru

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  2. Hi George. I found you because I saw you’d shared my mum’s blog – Wendy that is! I’m so proud of my mum and thanks so much for sharing. I enjoyed reading this post because it’s so well written and honest – there’s no point hiding away from the sad times – like you say, ‘let’s get it out there’. I hope you have a better day soon and I’m really glad I found your blog. All the best, Gemma

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  3. Hello George, I’m the Wendy you’ve so kindly spoken about. Your blog is excellent, and yes, it’s nice to find someone close by. I’ve learnt so much about myself since I was diagnosed. I have bad days too and they use to both me loads. However, now I’ve come to realise, that bad days are normal; you often don’t appear to have any control over the bad days or good. So now I allow myself to have bad days in the hope that tomorrow will be better. One of the advantages of dementia is that we often don’t remember how we felt yesterday……:)

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  4. Hello Wendy, and thanks for your reply. Thankfully I don’t have many bad days, and they tend to be when I have nothing to do outside home, and have been fairly active for a while. I still do remember how I felt the day before! It’s other things I forget. Look forward to keeping in touch.

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