Clearly we have much still to do……

So often at conferences, events and even on social media….we’re speaking, in the main, to the converted…..those who get it. That’s why I’m very selective as to which events I attend now. I want to speak to people who havn’t heard it all before and who may be hearing it for the first time. That’s also one reason for writing my book.

My article published in the New York Times (I don’t think I’ll ever get fed up of saying that sentence) produced many kind comments. I only read a few as I know full well that I should never read comments, but the one that saddened me most was:

“I am a little suspicious when someone writes a book about their dementia and continues to work. I just wonder if her condition really constitutes dementia.”

You think you’re finally getting there, finally changing perceptions, and then along comes a sentence like that which shows how much is still to be done.

I actually felt sorry for the person. I’d hate to comment on something which I knew so little about. That person must have thought they knew lots to make such a comment…..that’s what saddens me most.

I often worry  about reblogging about the same subject but one new reader might be seeing it for the first time but I’ve learnt how unimportant that is and many from the past might make another appearance.

In the grand scheme of things we’ve only reached a small percentage of the population so there is still a long long way to go.

The more people are diagnosed early, the more they can adjust and adapt before the later stages arrived. Four years ago, when I was diagnosed. I had days when I felt dementia free because that is the how it is. Some playmates, on those days, comments how they think the clinicians have got it wrong, only for some days later dementia slaps them in the face and announces its presence loud and clear.

For me the number of dementia free days have become less and less as the years have gone by and now it’s with me all the time, dementia free days a distant memory – that’s been my progression ……but my typing has allowed me to keep my intellect in tact and I’ll cling on to that for as long as I can.  And that’s what people fail to understand. We’re not stripped of all capacity from the point of diagnosis. Some decline quicker than others for various reasons.

That’s why I believe it must be so hard for those supporters to hear about us surviving each day as we do when their loved ones have declined quickly. It doesn’t make sense to them because their experience is very different.

We have a complex brain disease, our experiences are individual. Image the brain as a string of fairy lights. Each fairy light representing a different function of the brain. Some lights flicker on and off – dementia affecting our ability to do something one day and then we’re able to the next. But when the light fail altogether that’s when dementia has won and has taken that ability away for good. But different fairy lights flicker and fail for each of us. That’s why I can type and other can’t; that’s why they still cook and I can’t; that’s why they still feel hunger and I don’t.

Our experiences are different.

Finally, going back to the article in the New York Times….. the image they had accompanying the article looked suspiciously like a man – why a man when a woman was writing the article……but then me thinks that’s a whole new topic in itself…….

You can hear me speaking a shortened version of this blog on Dementia Diaries – a wonderful resource where many people with dementia are able to use their voice to be heard….

https://dementiadiaries.org/entry/9068/in-the-grand-scheme-of-things-weve-only-reached-a-small-percentage-of-the-population-so-there-is-still-a-long-long-way-to-go

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.

17 thoughts on “Clearly we have much still to do……

  1. You had an article in the New York Times!! That is amazing Wendy..well done. I’d focus on that and not the negative comments as sadly there will all always be people making ignorant comments on any subject that aren’t helpful no matter how hard you try to change things.
    I like to think that they are in a minority. But to suggest that you don’t have dementia undermines everything you are trying to change with peoples’ attitudes in that a diagnosis does not have to be the end, and your wonderful achievement in writing a book about your experience. Don’t know why anyone would think there is anything to gain by making up a diagnosis.

    If only you had a chance to meet those who make such hurtful comments, then they would take their comment back and see what a remarkable person you are.

    Martin x

    Liked by 1 person

  2. Wendy, sorry this comment is being posted in the wrong section of your blog.
    I have just watched your interview on ITVCalendar tonight 11/ 09/18.It should be broadcast much wider than East Yorkshire- “ Inspiring “and “Supportive” are the two words that come to mind. Thank you again for including us all on your journey, and doing so much to confront/promote our attitudes towards Alzheimer’s.

    Liked by 1 person

  3. Dear Wendy, I’ve just finished your book and recommended it to my friends. My mother in law has dementia and is now 86. She’s so happy and I know she totally picks up on the atmosphere around her and enjoys meeting her great grandson for the “first time” every weekend. What you are doing is brilliant! Cathy

    Liked by 1 person

  4. Dear Wendy,

    I am so happy that we are reading your book for our school community book club this term. You illuminate and inspire.

    You said there’s still a long, long way to go in understanding, but please know that here’s another little group of ordinary people in Australia who you have inspired and enlarged.

    Can I ask if you have a little pearl of wisdom that you would be willing to share for our book club discussion? Thank you for sharing your world with us.

    Briony

    Liked by 1 person

    1. How kind, thank you Briony. As for a comment, I would say “By the very nature of my diagnosis, my book is about the loss of the old and the birth of the new me. But what I hope it shows more is how relationships change in a crisis, how new friends are made and how adapting to this new world is the key to surviving. “Xx

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  5. Great article Wendy. I use your accounts to help an elderly woman whose fairy lights flicker in very extreme ways to make her very unhappy. In counselling I often share others’ experience and strategies. You provide such a wealth of material. And if anyone fails to be curious rather than ‘suspicious’ they hold stereotyped views that ignore all the work to raise awareness. As you say everyone is different in their pattern of disabilities and you provide a very clear example of how amazing the brain is, and how amazing you are in keeping your neuronal pathways open, proving the principles of neuroplasticity. Everyone approaches illness in a different way too, and not everyone has the gritty determination to do what you do. Make no mistake it is not easy. For others I see their determination in a game of cards, cycling, yoga, appreciating the small things in the moment, socialising, which are all activities for brain health which promote neuroplasticity, and make people feel better in the moment, make people feel alive. As soon as people put people living with dementia in a box and look for what they can’t do, trouble raises its head. It helps to think about under what circumstances, what views about dementia does this person have to lead him or her to be ‘suspicious’. Then you will know what you need to say, and whether it is worth your trouble. Some people will always have entrenched views that resist change. I haven’t seen any agreement with this comment .. perhaps the person will hang on to their view by nor reading any of the comments that challenge their view. I hear you might be working with Sally Knocker at her workshop at Congress in Brighton in November. I really look forward to meeting you in person. So much to say. Have you ever heard of the Hero’s Journey?
    With very best wishes and in Aretha Franklin’s words R.E.S.P.E.C.T … You are my hero.
    Clare

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  6. Wendy, It all depends on the rate of progression, comorbidity and type of dementia. People look at you and someone like Greg O’Brien who writes books and thinks that what you have is not something that constitutes dementia. That’s because in some cases it progresses quickly and it sometimes progresses and often progresses much faster in younger people. This is why people sometimes doubt that slow progressers have dementia. Because I am a fast progresser, I truly feel for people who have progressed quickly and feel they should not be forgotten. Here is a segment of a remarkable film about a brilliant woman who was diagnosed at age 46 with FTD. It’s called Looks Like Laurie, Sounds Like Laurie. She lived for 6 years and the last 3 were late stage but she was remarkable all the same, even without the ability to write a book and the loss of words – https://www.youtube.com/watch?v=xqjtl2aiKT8
    Let’s have respect not only for abilities retained but for all of us, like the late Laury Sacks. She was a valiant woman and this film is remarkable.

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