Are we ‘celebratising’ dementia…?….

Are we ‘celebratising’ dementia…?” A comment from an academic on Twitter last week……not sure if there is such a word….but hey ho……

It was in response to one of my tweets so I can only assume it was angled at me and maybe other playmates, didn’t know the person but jotted a note down to write this blog, then couldn’t find the tweet again 🙄……but ‘really’, ‘celebratising’? Are we not just speaking out in public to show we CAN? To show we’re no longer being silenced by society?

I asked my dear friend Google for a definition of ‘celebrity’…. It gave me 2….

a famous person, especially in entertainment or sport.’….well no, that’s not me….

The other being:

the state of being well known….’

Well the dementia bubble is so small, yes I’m ‘well known’ in it, but even then, only in certain areas and many others have been around far longer than me and are more ‘well known’. I just talk along on Twitter whereas others use other ways…

 I have fun on Twitter because I use it as a silent support medium….I show my weaknesses quite openly, because I hope it helps others.

Have I made dementia a ‘soft’ subject….a subject not to be taken seriously? I don’t think so. My form of activism may be ‘soft’ but it brings new people into the arena, a new audience who is listening. I’m loud on Twitter because I love that forum – my silent world of conversation enabling my fingers to do the talking and my fingers are far more articulate than my spoken word.

Does that make me “celebratise dementia”…… ? I really hope not as that’s not what I ever wanted.

As my daughter Gemma said on Twitter recently we live in an “inherently disabling environment”,  surely any voice in any arena is a powerful message that we’re here, we won’t be silenced?

I can’t be the serious activist with all the Rights data stored in my head, because that’s not me – I wish I could sometimes but I can’t retain Human Rights data. Many others are far better than me at that sort of activism and equally, if not more well known for it.

Yes I’d preferred to be known as a mum, as an author who wrote a good book, but it was dementia that gave me that ability to succeed in an area I’d never entered before so I do have to give dementia some credit there. I would only be known as a mum if I didn’t have dementia and only by a few friends and my daughters, so, yes dementia has brought me many new friends, has created a new world around me – so if I’m known by more in this small bubble of knowledge that exists in the dementia world, does that make me a celebrity, or simply well known by some?

I like to show dementia warts and all because that’s the reality. I have fun, I have adventures, I have totally rubbish days where I wish it was the end….I enjoy the social contact that Twitter brings me…..me a ‘celebrity’ – I think not…… I just want people to listen to take note and to think……is that what a celebrity wants? I don’t think so….

To take the seriousness out of this and to show the fun side of me….I’ll show you the piccie my daughter Gemma took of me while we were shopping in Leeds at the weekend…..

Nope, I can never be serious for too long and laughter and fun help me cope with dementi….I’d probably cry otherwise…..

 

 

About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. 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.

40 thoughts on “Are we ‘celebratising’ dementia…?….

  1. Take no notice of that ‘academic’. The way you have brought Dementia into the wider world is something you should be very proud of, and I’m 100% sure you have/are helping so many people in all walks of life, from the medical professionals, to those who have dementia/are caring for someone with dementia, and to the wider public who maybe knew not much at all (and are now feeling much wiser about it all) helping them maybe in the future. Keep up the superb work Wendy 🙂

    Liked by 1 person

  2. Absolute ‘ditto’ to Robert’s comments Wendy. Your blog has certainly opened my eyes to the many different forms of dementia and has certainly helped our family cope with dementia in the family. Yes-keep up the good work- there are still a lot more eyes need opening!

    Liked by 1 person

  3. I think that you do amazing things to help people understand what people in your situation experience and a lot of what you say applies equally well to people living with other conditions such as the Motor Neurone Disease my husband lives with. I guess that there is so much happening in our world that it is easy to become over-sensitive. The phrase ‘cancer is the hardest thing anyone will ever have to face’ that is used by a large cancer charity really upsets me because MND is pretty tough too and, unlike cancer, there is no way back. Ignore the people who knock what you do and keep doing what you do. If only we could create a world with joined up thinking then so many people who get overlooked might be helped. Your story has achieved so much and you are known by people other than those living with dementia and I suspect your words have inspired them to think about ways of coping with the changes that are needed.

    Liked by 1 person

  4. Dear Wendy,
    Stephen Hawkings said: Intelligence is the ability to adapt to change.
    I think, you are a very intelligent woman, who gives hope to many others. Please don´t care about “celebratrising”. Your book is a wonderful gift for me.
    Please keep on being Wendy.
    Greetings from Germany
    Inge

    Liked by 1 person

  5. I agree with all the above comments. I think that you have given others an invaluable insight into how one can manage their life , with helpful hints as to what works for you. By speaking out you have enabled others to share their own experiences and helped people to be more understanding and less frightened both for themselves or their loved ones. Your sense of humour always shines through in a way that academic writing cannot.
    You should feel proud of your achievements.
    Joan

    Liked by 1 person

  6. We are all, to our different abilities, bringing dementia into the daylight and destigmatising (another new word!). None of us want to have it, but we do. When we can we have to publicise it (not celebrate) as a condition that can happen to anyone, bringing with it a lot of ironies..

    Liked by 1 person

  7. I totally agree with everything that has been said.
    You are living with dementia and you write about it in a way ‘academics’ and the so called ‘experts’ cannot.
    Your honesty is truly amazing wendy you dont mind showing your vulnerabilities and that is inspiring for so many! Thank you.
    I mark on a dementia distance learning course and I always signpost learners to your book and blog!

    Liked by 1 person

  8. Early this morning, my 97 year old aunt died due to this disease. She was diagnosed more than 15 years ago. Her brother, my uncle, also died from early onset dementia at age 70. Thank you for all you do to help study how to make the lives of patients more fulfilling. The more we learn, the better the chance for treatment or prevention!

    Liked by 1 person

  9. Wendy and everyone here, you tell it like it is. We don’t know what that Tweeter might have meant, but I do know I agree with everything that has been said here in response to what you’ve written. I’ve learned such a lot from you, and told lots of people about you. There is a lot of misunderstanding around many conditions – dementia, as you’ve mentioned, MND, as mentioned by “liveaccessible” which is truly awful, Parkinson’s, which my sister has had for 18 years, just three examples. I love it when I get a message in my inbox telling me you’re blog is ready!

    And as for that picture of you as a reindeer – well, I just love it!

    Liked by 1 person

  10. I hope dementia can be CELEBRATISED. We like to think we live in a democracy where one person’s vote or opinion or support is equal to any other person’s but this is naive. Dementia does NOT have the money going into its investigation and support that it merits with 800,000 people affected in the UK. Why? Because the disease silences so many of those who have it. They live quietly and hidden. Celebrity interventions capture headlines and headlines get responses from government.

    Liked by 1 person

  11. If “celebratise” is the opposite of “demonize”, I’m all for it. Our previous tact of avoiding, stigmatizing, or condescending to those living with dementia doesn’t help anyone. You are shining a light in a dark corner, and opening eyes to reality, finding solutions, creating dialogue. “Celebratise” away, Wendy! You and your playmates are changing perceptions, an important step toward action. Cheers!

    Liked by 1 person

  12. I am glad you’re able to live your life with purpose and determination. We, your readers, have learned a lot by your example—more than living with dementia. Celebrity isn’t always earned.
    And I too love that photo with your crown of light.
    Respectfully yours. 💚 Barbara

    Liked by 1 person

  13. HI Your are far more understanding than me. I think you are amazing and I love your blog. I wondered actually if I could contact you about possibly doing a ‘guest post’ or something about my dementia book I’ve emailed you about before. It is great to show the positives about dementia to young kids.

    Liked by 1 person

  14. Just got round to reading today’s ‘Wendy-ways’! I’m sure you recognise how important your perceptions regarding all aspects of dementia are to your ‘followers’ (play-mates?!).
    I’m also pretty certain (and a bit cross!) any criticism in respect of your ‘enthusiasm’ to raise awareness is completely inappropriate! Your ability and energy in providing us with the ‘I cans!’ is the perfect ‘recipe’! Keep on ‘cooking up’ the days of our lives please Wendy!

    Liked by 1 person

  15. Hi Wendy. Bit slow in responding, sorry, have been out “celebratising” dementia and not checking my mail. What a goose this academic is – I do hope that you haven’t let it get to you, because the comment is clearly made in ignorance; with a total lack understanding of the way that some of us work to spread the word that a diagnosis of dementia is a new chapter rather than an end to everything, as well as helping ourselves to maintain function by keeping engaged and giving the whole thing a sense of purpose.

    I honestly believe that some medical practitioners as well as some academics, miss the whole point, and believe that we should just shut ourselves away and watch ourselves deteriorate. Well, I apologise for my bluntness, but to hell with them. How dare they tell us how to live our lives and If we can create awareness and help others to understand the experience of those of us living with dementia a little better, then what right have they got to judge / or criticise our “work”. It is great to hear about all that you do, thank you for the time you take in writing your blog (and I know you will say it is for your own benefit as well – I know that, but even so, it is another task!) I struggle to find the time to write my own blog, but love reading yours which encourages me to keep doing what I do, as we seem to have the same perspective on so many things – it also helps me to write something, in response to your encouraging words, so thank you. Please keep doing what you do for as long as you are able to do so – just as I plan to do. X

    Liked by 1 person

  16. I can’t see that there would be a problem even if you were ‘celebratising’ dementia – sounds quite nice – wouldn’t it be good if we could find some perks to living with this condition?

    I think sometimes people comment or tweet with little thought to the content and the repercussions. I wouldn’t take it personally – it’s rare to find anyone in the public eye who is so widely recognised as being a good egg as you so I’d put it down to lack of understanding and keep on keeping on x

    Like

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