The Dementia side of my trip to Birmingham……

Some people ask me how can I possibly do all the things I do on my own when I have dementia…..so today I thought I’d give you the dementia side of the trip I described yesterday………..

I received the invite some months ago and on the day an invite is confirmed, I start printing; printing the picture of the hotel, printing the picture of the venue, printing the picture of anywhere that needs to look familiar on the day so I don’t become anxious. If I’ve got a picture, I have something familiar to find.

So to the morning I leave…..I have to have a taxi as the buses don’t start running until later in the village, but I’m ready and waiting ages before the arrival time as I worry it will be late. I stand at the window watching for the familiar car. If the time approaches and there’s no sign, I ring them. They know I’ll ring them and don’t get annoyed as they know I have dementia and I’ve explained why I panic as the time approaches……

The same anxiety lasts until I reach my destination…..will the train be delayed and throw me off kilter as I have to have a plan B worked out so I don’t panic if I miss my connection…….that’s why I always take pictures as that helps me relax…..

Seeing the morning sun always helps....
Seeing the morning sun always helps….

The third train arrives, and it’s very busy – I have to have my bag near but there’s no room, so I have to risk leaving it in the luggage rack…….there’s someone in my seat, I need to sit by the window so I can see where I am and feel settled……..but they’re nice on this occasion and move to the aisle so I can have my seat. They move without a sigh or a tut, so I feel happy…….
I set an alarm to remind me where to get off – I set another to remember my suitcase as I can’t have it next to me, because by the time I get to Birmingham, if I don’t have it next to me, I’ll have forgotten I have one with me……

So I arrive in Birmingham, the station I know I hate due to its vastness and many exits leading to many places…….I wander around for a while, calming my fears into their box; there’s chaos as many trains have been cancelled and journeys disrupted, which can only lead to one thing – impatient people, fraught workers being hassled from all direction – I stand against a wall and watch the chaos around and try to work out what to do……I wait until I see a smiley face and ask which way out is the best way out….

Now the next biggy…….the busy streets and unfamiliar surroundings – which way to go for the ‘5 minute’ walk to the hotel. I find a nice friendly café – Waterstones or Neros is always a good bet. I take photos while I’m trying to spot one as taking photos always make me feel calm…..

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I find a Waterstones and sit with a coffee looking at my app trying to work out the directions to the hotel but the internet speed is as slow as my brain – something I wasn’t expecting in such a big city as Birmingham……the people I’d asked in the street didn’t know…..but the 3 smiley faces at the counter, have a lull in their queue of customers so I ask if they’ve any idea which way to turn out of the shop for the street I’m looking for…….they don’t but they hazard a guess and really do try and help….

Surprisingly, the internet signal is still rubbish outside 😱 – thought it would be brilliant here, so my phone, which I rely on, is struggling to help…..Eventually, after what seems like an age, my walking app says to turn left and head for St Martins church but it doesn’t look right compared to the printed map I have…….I see a community policemen with a smiley face. He knows the hotel and says the app is taking me the wrong way😳…..he says someone else had asked him for the same directions recently and explains perfectly – I’m relaxed…….he assures me it’s not that far – a 10 minute walk but in one direction…..
I continue to walk, looking all around for the building on the picture when all of a sudden, in the distance, I see the big letters of the hotel lit up on the skyline…..I’m happy as I follow the brightly lit sign in the sky …….

The smiley faces on reception are comforting. I find my room in the dimly lit corridor and make a cuppa…..ahhhhh, that’s better.

I then think of the morning – how do I do this journey in reverse back to the station? So I decide to walk back into the city to make sure I know my way back in the morning to the station as I have to catch another train, the short 10 minute ride to the university….I make notes in my phone as I’m finding landmarks. The sirens startle me – I find my earplugs……

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I find the ramp again that the policemen had sent me down – I then feel happy and take a walk up one side and down the other of the Christmas market, making sure I don’t detour down a side street otherwise I’ll be lost again……I love the lights and jollyness of all the traders and take more photos……

img_1895

But it’ll be dark soon so I have to stop and make my way back. I can’t ‘see’ in the distance in the dark – everything closes in and becomes unfamiliar. I buy my sandwich and snacks for the evening as I don’t like leaving my room once it gets dark, so the hotel restaurant is out of bounds and I’m more relaxed if I stay in my room……..

I’ve got a lovely view of the road below so can watch the chaos of the traffic from the calmness of my room. It’s 4pm, I have my supply of tea and milk in my suitcase, as there’s never enough in the room. I settle with the telly – just the bedside light on as I can’t work out how to make the lights work….I leave one curtain open, otherwise when I wake up the many times in the night, I won’t be able to see where I am or which direction to walk in this unfamiliar room……….so all Is well in the world until the morning when it all starts again…

and after the usual wake sleep wake sleep night, I finally get up at 5am to give me enough time for brain to engage to get ready for breakfast at 7 AND I realise why I couldn’t work out the lights the night before as shadow fell on the white light switches on a white wall………..🙄……. And now to work out how the shower…….

Why do I put myself through all this? Well, what’s the alternative? Not to go anywhere and sit at home deteriorating quickly? No, I don’t think so……..

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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.

18 thoughts on “The Dementia side of my trip to Birmingham……

  1. Hello Wendy

    This would make a fantastic article! Can I surest this to Anna?

    I will be at Leeds station by 10.00 and will look out for you.. We have met a few times there on the platform for the Bradford train in the past. Murna has told me it is easy to find the venue. I will have worked it out when I meet you. If by chance I don’t see you at Leeds I’ll check at Bradford.

    Look forward to seeing you next Tuesday Barbara with all good wishes as always

    Sent from my iPad

    Liked by 1 person

  2. Hi Wendy, I have just been receiving your blogs for a few weeks after someone recommended them to me. I am a dementia champion but though I have personal experience of dementia, my mother of 96 yrs now being in the final stages of dementia and in a care home and a friend of many years having early onset dementia and also at 68 yrs being in her final stages too and in a care home also, I wanted to understand more about how dementia affects daily life and how that is coped with so that i may be able to help others more. This blog has given me that very graphically and I thank you most sincerely.
    I could empathise completely with your last comment about keeping going, as when my husband died without warning 8 years ago I was asked how I could keep going and be so positive. My answer like yours was “what is the alternative – there isn’t one”. I wish you every strength for your forward striving.
    I hope you enjoy a restful and Happy Christmas and New year.
    Julia

    Liked by 1 person

  3. I can so relate to your experience! The other week I was in Bradford overnight at a hotel and had to do much the same – make sure I knew where I was going and program it into my phone to get directions, set alarms and alerts for each change of train and other stuff. Oh and I also carry my own supplies of coffee sugar and milk when I stay at hotels because there’s never enough and it’s usually nasty stuff they provide too.

    All the best and carry on x

    Liked by 1 person

  4. You are very inspiring Wendy. I have ‘shared’ your blogs with friends, because everyone has days they feel are uncope-able, and you are managing!! Loads of work, I see by this post. I LOVE that you get your inspiration, from your alternative. Keep on keeping on, you have a lot of folks ‘with’ you. ~Didi, on Vancouver Island, BC, Canada

    Liked by 1 person

  5. Hi Wendy

    I have a stammer which led to isolation which led to depression which led to drinking. I recently admitted the drinking. Your determination, courage and refusal to stagnate is inspiring. I need to get out of this house (though it seems terrifying and pointless out there – reading your words, possibly it isn’t.)

    Thank you.

    Warmest regards

    Richard

    Liked by 1 person

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