My Alien

Dementia is a funny thing. One can’t see it or feel it. And you really wouldn’t know you had it until something happens out of the ordinary and then you know.

I call my dementia the alien sometimes or the black entity other times. You know the horror film when you don’t want to go into the cellar in case the black mass gets you, well that is how I see my dementia.

Most times I forget I have it, and then most times when I feel tired I know but ignore it. I feel its waiting to say, ‘Im Here’ horrid thing.

Changes that happen are subtle as if my alien does things that I wouldn’t realise but I know. I know my body and mind.

I have eaten apples every day for 20 years, loved them. Gala Apples are my favourite as they are crisp and juicy. Now I don’t like them – strange I know. I don’t like biting into them, the texture against my mouth, the crunch I don’t like. I buy them out of habit and then they go off. If I cut them into wedges and into smaller amounts then that is fine.

There is a poem called ‘Apples’ in the book ‘To Forget With Grace’ by Jacqui Peedell and Jo Davies. Jacqui lives very well with her dementia and wrote this book of poems which I bought from her when we met at the Alzheimer’s Show. I understand where she is coming from, when I read her poems. Her book is available on Amazon on 20th June.

The same with carrots. I used to love raw carrots but against don’t like them now and if I cook them they have to be really cooked whereas in the old days I used to like a bit of crunch to them cooked.

I don’t like the smell of raw meat now. Last time I did a chicken casserole, I felt sick preparing it. Never had that problem before. After I cooked it, I threw most of it away as the smell was still up my nose.

Colours are getting more and more confusing. If I am playing a game against the computer where you shoot the balloons down, colours change in front of my eyes and its frustrating to say the least. I have just found out that I can change the colour of the keyboard on my phone. So it’s now blue with white letters and I can see it better.

I have also taken the predictive text off the phone and I am less stressed now, which is strange cause I used to love the predictive text before the alien took over my brain. Words get muddly as it is without adding to it. I get frustrated when the grammer police get on my case whether a word is spelt correctly, or the right or wrong word is used in the right category. Does it matter?

The English language is complex as it is. Which, witch, bare, bear, i before e except after c is the only thing I remember. Those versus they. I always think its a bit like the French language, la versus le, is something feminine over masculine. What makes a book le livre masculine. Yet La Chemise – feminine. Language is complex indeed.

No wonder we have trouble with our speech and language. When we have dementia.

Yet, despite all the weirdness my alien tries to fool me with I love my life. So I obviously am still beating that little horror. Every day is a blessing

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Memories are like Old Faded Photographs

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I am starting to see my memories like old faded photographs. You know the ones I mean, the old black and white ones that just fade over time. The one above is of someone from my family. My great, great grandmother. That is what my memories are like.

I can remember when I was a child like it happened yesterday, yet recent events are fading very fast. I would say the last few years are becoming a distant memory. I used to work in a seaside town called Deal and if anyone mentioned a patients name then I used to know exactly where they lived, the name of the road, house etc and what was wrong with them. Now I wouldn’t even know where half the roads were or their names. I know that isn’t important in the grand scheme of things but it is too me in one way.

People I used to work with, Old friends, I look down my friend list on Facebook and have no clue who some of them are now. Just can’t remember. And when I do try to remember something its like a higglety pigglety video thats playing with bits missing, its there but its not as well. If that makes sense.

I used to get so upset when I first couldn’t remember a dance I had been too or a person I had met but now I am getting used to it. And if someone says hello in the street and I don’t recognise them. I tend to stop and ask them who they are and how they know me, whereas in the beginning I used to feel embarrassed that I didn’t recognise them.

It’s like when I can’t remember names of things, its ridiculous but its can’t be helped either. And when someone tells me the answer it doesn’t sound right like a foreign language. I used to be very good at words and now I am often asking people what words mean. Sometimes the spelling looks weird and I often think, that can’t be right but it is. There are very subtle changes going on in my brain yet I am aware of it.

Numbers are completely foreign to me. I don’t understand them. Yet as a nurse I used to have to use maths all the time. My mum gave me a adult dot to dot book which are all the rage here in the UK. And I can’t do it. I feel a little bit ashamed admitting it but I can’t. It takes all my concentration just to do up to 50 then I lose it a bit. On paper they are so muddly that I just don’t understand then it makes my dementia more apparent.

Yet I have to write 14.00 hrs or 18.00 hrs instead of 2pm or 6pm as once a nurse always a nurse. We always wrote in the 24 hour format. It seems strange and wrong if I don’t write it in a way that I feel comfortable with.

And we always spoke in the phonetic alphabet if we were on the phone and trying to give a postcode or something. So that is commonplace with me still. Tango, November, Echo etc

Yet in other aspects I remember a lot more than when I first got diagnosed. I remember seeing my friend, Helen and her son and we went to this beautiful park with baby swans. Can’t tell you when it was. I remember walking with my friend Maxine and her dog Bonnie in the woods sometime, she got chased by some bees and then we got lost. These events happened last year sometime, but I don’t think it matters when its just nice to have those memories still there.

I think its funny how we can remember some things but not others. This is one of the reasons I take lots of photos and try and write about the walks I do with Annie, my walking buddy. It’s so important to document life in the best way you can.

Missing Me

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Missing Me

Sometimes I miss me, the old me
The girl who liked to go dancing
Now the music seems too loud
I used to spin around with glee
But at least I still love laughing
But I don’t like to be part of the crowd

At times, the noise is too much for me to cope with
Like angry bees stuck in my head, buzzing constantly
I miss going out and about, being part of the crew
But at least I still believe in magic, spirit and myth
And I still believe in honestly
But sometimes I still get blue

I miss driving around, going to different places
And sometimes I do miss work, hard to believe
And I do miss my memory at times
But I still remember some faces
And it’s not like me to grieve and grieve
Although my tastes have changed, I still like my limes

I miss watching the dramas, but get lost easily
Sometimes it’s hard for me to tell fiction from reality
Then I get scared which was never like me
But at least I live peacefully
And will always be free
And I am lucky that I live between the countryside and sea

I loved how I could see the changes of the seasons when out and about
And how the skies change depending on the weather
That was the best thing about being a community nurse
At least, not working means that there is no one left to shout
But who cares as long as we are together
And I am determined that the dementia will not get worse

As friends and family, we have each other’s back
Although it is also nice to be that someone’s special
Someone to see beyond and just see me
It’s nice to be alone, but also nice to be part of a pack
But I also don’t want to meet a devil
And I don’t want to be seen to flee

I don’t like the fact that I get tired
Or that my speech gets slurred
Or that I have to walk with a stick sometimes
It seems mad that I am admired
By some, my vision sometimes gets blurred
But now I have retired I now write rhymes

But on the upside, I am still able to walk
I still garden and explore different areas
By using public transport
Sometimes I have to steed myself as want to balk
But I try not to take myself too serious
And occasionally I still allow myself a glass of port

So although I do miss the old me
I am getting used to this new person
I am still positive and full of beans
And can still make the odd stew
And I quite like this new version
Of me and my family genes

©Tracey Shorthouse 2016

Mind over Matter

It’s mind over matter ………… You can do it

How often have we heard that in our lifetime, from our parents, grandparents, friends etc.

We have a fear or are not sure about something, and that fear escalates in our head until its threefold and you can’t get away from it.

But its mind over matter……

We are all capable of achieving so much in our lives if only some of us didn’t have that small inkling of fear trickling away in our heads and hearts.

When I first got my diagnosis of dementia, my consultant told me that I was now classed as vulnerable because I don’t remember. I felt scared and frightened which when I look back is ridiculous as I have always been independent and when I took stock of what was or is my life. I am still independent. But back then, because vulnerability is a negative statement and I got a bit scared of going out on my own, scared of opening the door to someone in case they knew I had dementia and could take advantage.

I have only been a victim once and that is when I was in an abusive relationship a long time ago, then I made a stand and got rid of him and vowed I would never be a victim again.

Being scared of someone is one thing, being scared of something is another. But at the end of it, its all under the same umbrella of being a victim of your own fear.

The first time I used the bus I was terrified, terrified of missing my stop, sat near the bell and as time went on it became easier. I have always been aware for what or who is about, so some things don’t change. I still sit near the bell because it is easier for me knowing that I can stop the bus when I want to.

It’s quite easy to become a hermit, not see anyone for days. Yes, I have friends but they all have their own lives, as I do. I make myself go out visit friends, go to groups, go walking.

The only time I used to feel vulnerable and that is when I get tired, my speech gets slurred and my gait isn’t very good. But I carry a collapsible walking stick in my handbag and I take that out if needed. And I don’t go out if I am extra tired because my brain and thought processes get a bit sluggish and I don’t feel safe.
We are in charge of our own lives and we need to make a stand. The dementia shouldn’t be making us a victim.

Have a good day ♥

Don’t be a hermit

It’s very easy to become a hermit when you have a long term condition such as dementia but its not healthy as the brain needs stimulation. For me I have to get a happy medium and pace myself as I get tired very quickly but I also like to do things.

I can’t cope with crowds as I am not able to distinguish between the voices, its like a constant rabble in the environment. So I  very rarely go out in the evening anymore with friends as they always end up going to a noisy pub, then I feel isolated as I can’t tell what they are supposed to be saying and then I find myself going into my own little world wishing I was at home. Plus my speech and gait get affected when I get tired and the evening is usually the worse for me as well.

So I try and see friends in the day, or go out in the day which suits me better. I go to a variety of different groups so I can mix, I suppose that is one of the reasons I miss working seeing people. I go to a weekly writing group which is good as it encourages me to hand write stories and such and keeps that skill going. I go to a group called Rosies Moments and its situated at the sports centre and we do a variety of physical and mental activities and I enjoy that. I also go to a group called The SunShiners which consists of a mix of psychologists and people who have dementia and we try and raise positivity about dementia cause most of us are quite young.

I go and give talks to post diagnostic groups, these are people who have just been diagnosed with dementia and tell them not to give up. And also I talk to the public to bring awareness that dementia does affect all ages not just the elderly.

I love to walk so have a walking buddy as sometimes I am not so safe on my own.

Just a matter of pushing and persevering always

Who Am I

This is the post excerpt.

My name is Tracey and when I was 45 I was diagnosed with early onset of Alzheimer’s Disease and Posterior Cortical Atrophy which is a different kind of dementia. I was fighting for nearly two years to get anyone to believe that there was anything wrong with me, so it was a relief to get a diagnosis.

I used to be a qualified nurse, I first worked on a busy ward in a hospital before going out into the community where I remained until I retired last May, 2016. I knew something was wrong, when I went to see a patient, before my fight of getting diagnosed, and wrote gobbledygook in his notes and didn’t realise and a colleague told me. And other things were starting to happen, like getting lost on the way to work, or losing the car.

Soon after my diagnosis, I stopped driving as it became too scary for me. The PCA part of my dementia tends to hide things, its affects my spacial awareness and perception of things. The buses where I live as very frequent so I am lucky.

The dementia’s give me a lot of problems which I work through and they don’t stop me from doing something I just adapt.

I don’t get hungry or thirsty, so I have breakfast with my tablets and I eat again about 18.00 0r 19.00 hours. I have an alarm in my kitchen which I set every hour and a half to remind me to drink. It’s in the kitchen because I then have to go and switch it off and then drink.

At times I have had to relearn old skills which I have lost, and I have done this by perseverance and not wanting to give up. Using the computer and cooking are two skills I have had to relearn.

I call the dementia my alien. The black entity that strives to get hold of my brain. Well its not getting it without a fight. I am worth so much more.

I write a blog because I forget so easily. So its my way of keeping a memory and hopefully it might helps others. I write poetry as well so that will be shared and also take lots of photos. Life is precious and we need to fight to keep in it. I try and keep positive because its heaps better than being negative. Plus I always see the dementia as being that negative energy and light always overpowers darkness.

By fighting each day, I will prevail.

I have four rules of thumb : –

  1. Adapt – I can’t always do the things I used to be able to, so I adapt
  2. Try and not stress about things I can’t control
  3. If a bad day occurs and we all have them, then there is always tomorrow
  4. Always, always try to keep a sense of humour, which is the most important.