An unexpected consequence of this strange world……

Before we entered this strange world we find ourselves in, I was used to travelling about, meeting new people in new environments, chatting to people all day long…..it was my sudoku, keeping dementia at bay….giving me something to fight it with…but now that social interaction has disappeared, “Talking’ to others is now a luxury. No longer am I starting off my day chatting to my taxi driver, chatting to fellow commuters, chatting to people at events and then all the way home in reverse….

Sadly this isn’t working in my favour as I’ve found myself having to concentrate so much when I do talk; have more problems word finding; find myself stuttering and grappling with words, mt speech slowing down…..a strange unexpected consequence I’d never considered. My typing is fine as I’m typing more than ever to keep in touch….

I suppose it can be compared to when I gave up typing for 2 weeks one Christmas and when I next opened my iPad I couldn’t remember what to do. I’ve never stopped typing since. Now I just find creeeping signs of the same thing happening with talking…..I’m not talking anywhere near as much, so when I do, I struggle more than before, have to concentrate on words, on sentences.….it happened within a week or so of events stopping so hopefully I’ve realised early…..even my daughters have noticed the change…

I open my mouth and the sentence in my head just doesn’t appear, this alien speaks for me and I’m so often shocked at what I hear come out of my mouth. When I talk to myself in my mind, it’s the old voice….my old voice is on the short video we made for the BBC some 5 years ago….you can listen and watch me here along with Keith and Christopher, just months after I was diagnosed…..my old voice….

 

But it’s a different voice that appears now when I speak……😔….yet when I talk to myself, in my head, it’s my old voice I can here…comforting but locked away inside my head…

I’ve been embracing this new community of ‘Zoom get togethers’ to try and avert disaster so when Anna Harrison suggested I set up my own ‘On the Web with Wendy’ – virtual chat sessions with me and a guest playmate on anything and everything, I jumped at the chance to see if I could make it work….the first session is today and has sold out, so we shall see how it goes. I plan to do 2 more next week if there’s enough interest….

On Monday, I had 3 zoom calls, the first was the first for Minds and Voices. Many hadn’t used zoom before. We had Eileen zoom in from Australia where she moved to in December!….Elaine couldn’t work out the zoom bit but had the genius idea of FaceTiming Damian, hence the reason why he’s holding up his phone on his shoulder to let Elaine take part and see us all…..so we had some gremlins but still lots of raucous laughter,

….followed by a call to help me set up my own web chat, and then my weekly Zoomettes call…

During this time of strangeness and isolation, we all need to find different ways to communicate with our fellow human beings. I find it helps me to cope with one day at a time. Think too far ahead and that’s where sadness lies as no one knows where the end is…..

I feel sooo much for those without the internet, without a smart phone….one of our playmates at Minds and Voices is one such person, so other ways are being looked at to help support her.

I’m not saying all this for sympathy. I’m trying to do everything I can to avert this irritation. I’m highlighting it to others as a warning, because people with dementia in Care Homes may no longer have any visitors; people in isolation may not speak to anyone for days; will their words escape them through lack of practice just like everything else that we don’t do frequently….? Keep talking, keep communicating….

I’m so lucky to have my virtual friends…looks like I need them more than ever now….

 

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.

36 thoughts on “An unexpected consequence of this strange world……

  1. Thank you for your posts. My lovely Mum Bridget is in a care home with advanced dementia, her day hasn’t changed much, but her carers say that the visitors (that are now not allowed) used to break the day up for all the residents whether they were visiting them or not. The carers are missing the family members and friends too and it feels eerily quiet.

    Liked by 1 person

    1. Hello Christine, is there any chance you can persuade the care home to arrange social media opportunities for the “residents”? The T.V’s or often on quite a lot but what about some personalised stuff through Zoom?
      . It may require some ingenuity but if the carers know their individuals well they will know for who it might work?

      Stay well, stay safe. xx

      Liked by 1 person

  2. I think Zoom and similar technical systems are saving us all in this crisis Wendy. Enjoy meeting your virtual friends.. I’ve just done a Zoom pilates class! Stay safe

    Liked by 1 person

  3. Keep going wendy dont lose that positive outlook and that “where there is a will there is a way’ attitude.
    I know it cant be easy but you are still an inspiration to so many! Stay safe x

    Liked by 1 person

  4. Wendy I have a lump in my throat and close to tears. You are my favorite person and want you to keep your smiley face. I’ll definitely connect and listen to you keep talking. Xxxx

    Liked by 1 person

  5. Keep talking as much as you can, Wendy. Zoom and other systems are now a lifeline for many people – like you, I feel for those people who cannot use communication technology. 😥

    Liked by 1 person

  6. I’d never heard of Zoom until you mentioned it a few weeks ago, Wendy, now everyone seems to be talking about it! I wonder if you’ve tried talking to yourself out loud or even while looking at yourself in a mirror. I don’t know if it would help or not, and would be interested to see.

    Liked by 1 person

  7. Wendy, when you are on your way through the village, will you make handyvideos of the beautiful places there and comment them?It will be wonderful to see the places with an explanation of you.We will love it to learn about your village through hearing your voice.It is so beautiful there, please be our guide💙💚💕

    Liked by 2 people

      1. I’m my husband’s Carer and, like you, he’s missing his social interaction. I’ve noticed a change in him already. I’m also working at home just now. We have the internet, iPads and smart phones but I have no idea how to use all the new methods of communication and no one to help us learn. There’s lots on the news about people linking up using these methods, but we feel excluded. We need some TV tutorials.

        Liked by 1 person

      2. Aww that must be really hard. I’m very lucky that people taught me all this before this crazy world started and for that I’m grateful. I’m actually running my own zoom chats twice a week and may think of opening them up to my blog followers now. Have a look at this guide for zoom from me and my playmates and maybe you could join us. I’ll advertise it through my blog if I do… https://www.dementiavoices.org.uk/the-zoomettes-guide-to-setting-up-a-virtual-peer-support-meeting-using-zoom/

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  8. Wendy, you are an amazing lady, stay positive, stay safe and keep putting your thoughts in writing. My dear husband is in a Dementia care home and completely unaware of what is happening in this strange world. It is very difficult to have a conversation with him as he cannot remember anything from one minute to the other. I feel sad for him and all patients who cannot have visitors. He sometimes remembers me, other times he keeps asking who I am! Bless him, I cannot even cuddle him. Your memoirs, as I call them, help me to understand the process you are going through and I think you are a very brave, positive soul. Thank you for the strength you give me. Take care lots of love 💕 xxx

    Liked by 1 person

  9. Wendy so glad you’ve found a way of talking on Zoom. You are such an inspiration to everyone. Sending love and hugs 🤗. Viv 😘 xx

    Liked by 1 person

  10. I remember my dad telling me the trouble with winter was he saw less people so got out of the habit of talking…. that was my first warning sign, but it took another 2 years before he actually went and got a diagnosis. i do wonder how different his last few years could have been if he and my mum hadn’t had such a strong stigma about dementia.

    Liked by 1 person

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