The varying rates of deterioration…..

I thought I might have written a blog like this before, but if I have I’ve not been able to find it…..it surprised me that I hadn’t as these thought are often with me…

I could have used ‘Progression’ in the title, being the positive person I am, but for me there’s nothing positive in the progression of dementia, hence the use of ‘deterioration’.

The thoughts that here I am typing away, speaking at events, while other are in a very different place and one I wouldn’t want to be. I often think it must annoy the hell out of some carers who are supporting people who bear no relation to me, yet we both have that diagnosis of dementia – it must seem so unfair….

I often feel worn me down with guilt – guilt that I’m surviving in the way I am – but it’s MY way of surviving. I also know I shouldn’t feel guilty,  but that’s just me.

I may not have much of a short term memory but I do remember very high and very low emotional times distinctly. My first ever meeting at the Alzheimers society offices when a carer said to me….

Yes but you don’t have real dementia”

……always rings loud and clear in my head. That ignorance of the fact that dementia isn’t just that which is experienced by those in the late stages.

A friend of mine has recently gone through a traumatic time and her lovely hubby suddenly deteriorated and turned violent – whether through dementia, medication, or feeling distressed and confused, who knows, but no one seemed to be listening and that’s the shocking thing…no one listening.

We’re probably the same age and the guilt I felt when I found out was so heavy. His family see me blogging and tweeting and it must seem so unfair.

But this shows crystal clear how every dementia is different …..how individuals experience and react in a different way…..how there is no handbook for how are brains are wired……

I’m often questioned and criticised on Twitter. When it’s by professionals, that hurts as they should know better, but I understand when it’s from people having a different experience. I can feel their hurt, their vision of unfairness of me ‘surviving’ while those closest to them are in a different place. I understand their anger, sadness and bitterness – it’s fine, I understand. I have much support on Twitter who look after me but I often wonder how much support they have 😔

In talks I say this:

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. I can type words far quicker than I can think and speak them because that part of my brain hasn’t been affected others can’t type but can speak better than me. If I didn’t have these words in front of me I’d be floundering.”

That seems to flash moments of understanding in some peoples eyes…..I can sense light bulb moments being switched on in their heads….

To survive I have to do what I need to do and I’m sorry if tweeting and blogging hurts some people, that was never my intention. But these things help me to survive this cruel disease. I know it helps many but I know it hurts too.

So many of us are criticised at the way we go about our life, but that way is our way. One day our cliff edge will arrive and those who criticise may then accept us……we will ‘fit’ the stereotypical image …but for now, I and I hope all my playmates, will ignore the cruel comments thrown at them.

As for those supporting those whose deterioration is quicker and more cruel, please accept my hug. My thoughts are with you as I would never want my daughters to be in your shoes and will do everything in my power to prevent it….

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.

66 thoughts on “The varying rates of deterioration…..

  1. Wendy you have nothing to apologise for to anyone, far from it. You have been dealt a cruel enough hand and are dealing with it as you best can, and getting as much out of your life as you can – most reasonable people will applaud you! As you say, every person with dementia is individual and will be affected differently – you can’t predict or prescribe one way of dealing with it. What you do, in shedding light on the disease as only someone experiencing it can, is invaluable and long may you continue.

    Liked by 4 people

  2. Hello Wendy, ignore the ignorance and keep up the wonderful work you do every case is different .
    I am a Carer for my Husband whose working memory is only 6 per cent .
    But bless him he also has Invasive Prostrate Cancer and is having Chemotherapy right now, thank you for the internet hug much needed.
    God bless Wendy.
    Ann 🙋

    Liked by 1 person

  3. Wendy its strange how each person reacts to anything they are challenged with isn’t it. You are coping fantastically and will continue I’m sure, as long as you stay positive. It sometimes irks me ( it shouldn’t l know) when people learn of my last two years of surgery..lung cancer then breast cancer ..next week gall bladder comes out…They say but you look so well!!! I have done through it all . I guess staying positive and just dealing with whatever comes has to be key ..who knows??

    Liked by 1 person

  4. Wendy, You are a kind soul, very blessed indeed. I must admit that there have been times when I have been envious of your ability to go places, be so useful and interact with others. Unfortunately, even though I only supposedly have MCI for the last 2 and a half years, I suffer from terrible anxiety due to heart issues and PTSD, along with the MCI diagnosis, and that keeps me many times at home, unable to go many places except doctors appointments. I used to be a social butterfly, loved being with people, and now if it wasn’t for my wonderful family I’d be a hermit most times.
    Keep going as long as you can, you are an inspiration and I so look forward to your daily columns.

    Liked by 1 person

  5. Wendy, I understand why you may feel guilty at times, but I pray those times are few and far between. You are such an inspiration! You have opened my mind and heart to the disease in ways my mom can no longer Express. God obviously has allowed you to continue putting your thoughts and feelings out there. Keep up the amazing work you are doing!!

    Liked by 1 person

  6. Your words ring true so many times. I thank you for putting into words how my husband may be feeling when he can’t express himself without fear of upsetting others.

    Liked by 1 person

  7. I am right with you here. My doctor once said to me “You are coping too well”!!! He, a professional who had seen all my test results on which he made my diagnosis and still he questions my ability to be able to put strategies in place to “manage” on a day to day basis. It has made me more patient with those who tell me, as they have told you that I don’t have real dementia. I tell them, as I told my doctor – it is exhausting to do what I do, but that won’t stop me from doing it for as long as I can. I am one of the lucky ones, but none of us know what is around the corner and when the capacity to function will be taken away from us…maybe it’s not fair, but would others wish to see us deteriorate quicker to prove a point?

    Liked by 1 person

  8. You have expressed the lack of understanding so succinctly Wendy. It is incredible how professionals still seem to hold a one size fits all view. All power to your elbow (or should that be typing fingers!) and keep on blogging and tweeting. We all have so much to learn. Xxx💕💕

    Liked by 1 person

  9. You have helped me understand the effects, for you, of this awful disease. I thank you, and can say you have been the inspiration for me getting involved in dementia research.

    Liked by 1 person

  10. Hi Wendy – I’ve just read your book and found it totally inspirational. I don’t have dementia but I know people who do, and I agree that everyone has their own journey. I have so valued your insights and the sharing of your experiences, and I hope this will make me more sensitive to those on this journey. Thank you – keep sharing – you are providing a window into the world of dementia that is impossible to get any other way x

    Like

  11. I am affected by a hereditary condition which affects all my body tissues. It is called Ehlers Danlos Syndrome. Our EDS bodies have a defective form of collagen so over time the tissues deteriorate. Most apparent to people would be joint problems when the supporting ligaments and tendons fail. But problems in the heart & circulatory system are common, and many people have autonomic nervous system dysfunction and digestive issues.

    It is also a condition that varies greatly from person to person. …Even in one person some days can be better than others. There is a huge lack of public understanding, and even a lack of understanding among many doctors.

    So I find inspiration from reading about how you deal with your own condition with such determined positivity. It helps me deal more positively with my own issues!

    I have also learned a lot about dementia – and I think you are doing a wonderful job of educating people through your book and your blog posts! ….Bless you!!

    Liked by 1 person

  12. I’m so sorry that you feel guilty for just trying to resist this awful illness and give the rest of us a view from the frontline – your research must be so exhausting for you at times but it is immeasurably helpful and interesting so many many thanks.

    Liked by 1 person

  13. Wendy, you are an inspiration to us all so please don’t allow others criticism and negative comments affect you. You are brilliantly doing what you can to let others know what this journey is like for you. As a carer to my husband it is helpful to hear even if it isn’t exactly like his journey. Thankyou.

    Liked by 1 person

  14. I have just finished reading your book which I came across after listening to your interviews on Two Cups of Tea. I have a sister in law with early onset dementia and you have really helped me with my understanding of it. I look forward to reading your blogs and am always telling others how you
    live with dementia and don’t suffer with it. You are living your life to the best of your ability while you can. 😊

    Liked by 1 person

  15. Yes everybody’s dementia, everybody’s grieving and everyones retirement is individual and changing. And the stereotypes are invidious, and need challenging.
    Did you hear Your’kshire Tea are holding a competition titled Worth your weight. I wonder how many other people would like to nominate you! Would you mind? ‘

    Liked by 1 person

  16. Beg to disagree with most people commenting here, and agree with you. As you said here and on Twitter – how crazy that people with dementia have to rely on social media for support and those that cannot do that are truly lost and unsupported. Thank you for saying that. Feel proud of speaking up for others, for using your celebrity for others.

    Liked by 1 person

      1. Definitely a celebrity 😀- a book, twitter, honorary degrees and world press attention. Thank you again for insisting that you are not typical and remembering that not all are the same.

        Liked by 1 person

  17. Thank you for expressing what people “living as well as possible with dementia” can face. People do not understand the amount of effort, brain work and support it takes to campaign as you do. I don’t understand why the people that are living well with their type of dementia are not being studied, there are a number of you in many countries. Many people who my mum Agnes met in Toronto in 2011 at ADI are still living in their communities, some have died. Don’t be put off living your way, Wendy. Love your blog, thank you x “Keep on keeping on”

    Liked by 1 person

  18. Dear Wendy – you fight the fight and take it to dementia, and you do it how you have to do it. Nobody should ever be critical of that, on the contrary it’s a credit to your strength of character that you are. You represent a silent majority, such as my beloved Mum, who have been robbed from us due to the descending fog of dementia. Stay strong and internet hugs all around from those afar!

    Liked by 1 person

  19. Wendy, you don’t have anything to apologise for. I have just finished your book this evening and could not be more excited to jump into your blog to read your most recent posts. My Mum is 68 with Alzheimers and my Dad her carer full time. You have been nothing but an inspiration to me, please keep doing what you’re doing it has helped so many people to gain an understanding. I am so glad I found your book and will continue to follow your blog. Sending you and your daughters the warmest wishes and p.s my Mum loves giving my cat Jasper a stroke it certainly looks like it helps 🙂 xx

    Liked by 1 person

  20. It’s the same with any long-term condition Wendy – much variation and individuality contained within a single diagnostic label. I have Type 1 diabetes, and do OK because I have good early warning symptons if my blood glucose is dipping. So it’s never stopped me doing anything. Whereas some people can go into a hypoglycaemic coma without much warning and it’s a very limiting, tough condition for them. I have bad moments when I can’t seem to control the condition for a day or two; and one day I’ll get a test result or something that tells me that long-term effects are kicking in. But for now, I get the satisfaction of living well with diabetes and sometimes even people are impressed.

    There are people with leg amputations who can put on an advanced engineered prosthetic limb and win Paralympic medals. And there are other people with superficially the same thing who feel ‘phantom limbs’, and/or a whole lump of pain where the real limb used to be, and sores and problems with wound care. Perhaps they watch the Paralympics and worry what people will make of them with their sorrows and difficulties.

    I feel for you in many ways – I’d hate to lose the taste for food and for the maltiness of a proper cup of tea. I like to have – need to have – time off to recharge and clear my head – whereas if you stop for too long you fear losing your skills. Just because you can get around on the trains, speak beautifully in public, and live alone (with an overweight cat) doesn’t mean you have an easy time of it.

    Liked by 1 person

  21. We all have a ‘public face’ (the one that we keep in the jar by the door) and very few see our ‘private face’. It would be good if more people thought about this.
    My hubby has mixed dementia, but you wouldn’t know to look at him, and would probably need to spend quite a lot of time with him to realise that he’s anything other than forgetful of words. His ‘progression’ is slow currently, he varies from day-to-day, but he always put on his ‘public face’ when he’s out and about or speaking on the ‘phone. Consequently, everyone seems to think we’re okay and we are, mostly … but not always.

    Liked by 1 person

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