Acceptance is the key

I am usually okay with my dementia. I have accepted it a long time ago, and if people don’t get it then its their problem. But what I don’t like is when someone makes me feel stupid because I just don’t remember. It’s not my fault. Yes, I am young, yes I have got something wrong with my brain, yes I do have dementia.

I had to catch a train this morning. I didn’t have to go too far, two stops and I was there. I get nervous getting trains. The stations are usually very hustle and bustle, too many people. I got my tickets and then couldn’t remember what to do with them and the ticket gate. Do they go through the top hole or the bottom hole? I felt myself getting hot as this meant I would have to ask someone.

Perceptions are a funny thing. We are all human beings and make snap judgements without realising we do it. The man at the gate who worked at the station, did just that. I could see it in his eyes, and the way he smirked when I asked him which way my ticket went. I patiently explained that I had dementia and just couldn’t remember. No big deal. But instead of just telling me and thats that. I took my ticket from me, sighed and did it for me.

I wanted to ask him if he had had training about dementia and dealing with someone with dementia. But was more worried about catching my train. In the UK, the government is very hot about rolling out dementia training for everyone in business.

I just felt frustrated today by the whole experience.

Never give up on dreams

i-am-still-me-bookWell, my book has come out today on Amazon and Authorhouse. I feel so proud of myself. I never, in a millions years, thought I would write a book of poems when I first got diagnosed with dementia. It’s a book of poetry some pertaining to my dementia, but most about life in general or nature. There are about 20 photos in the book as well. I chose the cover because I love nature and trees, and the trees losing their leaves remind me of my brain. I want to tell people never to give up, on anything đź’–

Prison of Thoughts

Prison of Thoughts

Let me out, let me out
Can you not see inside the contours of my mind?
Why do you have to doubt?
Why do you feel the need to bind?

The corridors are long and winding
Full of space and yet locked doors
I feel cross that you are so binding
As I run across the floors

I bang on the windows, and then the doors
Racing back and forth
I search frantically through my drawers
Then back to East, West, South and North

All you do is make me anxious
I so want to be free
My mind should be a blank canvas
But it’s not, so I will shout and I will plea

Let me out, let me out right now
You can’t keep me prisoner
You promised and made a vow
But all you have done is imprison her

Her is me, don’t you hear?
It’s so unfair, this prison of walls
When you are there and I am here
You say it is to prevent my falls

Why have you put me in this place?
Full of locks and bars
I spend my life pacing within the space
But as I peer out, I see all the cars

I want so much to be free
Like a bird gliding through the sky
Or like the fish in the sea
Yet all I do is sit and cry

As I am here within the confinements of the home
And the prison of my mind
Where I am allowed to roam
And the nurses here are so kind

Don’t forget that I miss you, child
For that is how I remember you
You used to be so wild
Even more as you grew

Please let me come home with you
I promise that I will be good
I will make you my famous stew
You told me that you would if you could

But that I will be too unsafe to leave
My mind doesn’t understand
I wiped my face on my sleeve
Then you gave me a reprimand

And gave me a tissue instead
You sighed and looked at your watch
I felt there was a lot things unsaid
Yet I couldn’t remember, so asked if you still did the hopscotch

I don’t remember you leaving
And here am I pacing again
Why is everyone so deceiving
Why doesn’t anyone explain?

©Tracey Shorthouse 2016

Don’t Give Up

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We only have one life, and our life is short compared to the universe, so we have to make the best of it. I strive to do the best I can by always thinking on the positive over the negative no matter what.

When you have a condition, you have to learn to adapt and believe that you can get through it. Thought is a powerful tool, and if you believe it enough , you will. I believe that I will have at least 20 – 30 years ahead of me before my dementia takes hold of me, and I firmly believe that.

But you must NEVER GIVE UP on your life. The minute you do, then the condition takes over and you will lose. Why should that win over your life which is so precious.

When I first had trouble with writing, and remembering and finally got my diagnosis, I couldn’t use a computer very well. I used to in the old days but over time my coordination wasn’t very good. I couldn’t use the keyboard and keep looking at the screen, all the words kept jumbling up. But because I started to write poetry and it was easier to put it on the computer than handwriting it, I persevered and now can use a keyboard as fast as I used to be able to. You just need to push yourself and believe you can do it.

I don’t want to give up on skills that I used to have so I make myself do things, no matter how hard it is sometimes.

I have started doing on line courses which are free because I enjoy learning new stuff. Always did when I was a nurse and I know i can’t retain information now and I can’t remember a lot of what is said to me but at the time I like to learn something new and who knows that it might help my brain adapt, and I might remember bits of it. I don’t believe in the word can’t.

Sometimes my speech is affected especially when I get tired, its like I have no coordination over my tongue and I can’t always remember the words but I like to persevere to get the words out if I can. I hear of people who give up talking because its exhausting trying to speak. I don’t want to do that so I will try as much as I can. My friends always ask me if I want them to help say the word.

Last year I attempted to walk 44km for charity. I managed to walk 26 km in the end as I was poorly on the day but it was still an achievement for me.

We all need to FIGHT FOR WHAT WE BELIEVE IN.

And we all have bad days. Everyone does. So if you do something that isn’t quite right, or you can’t remember something, or its just a bad day. Don’t give up at the first hurdle and think your condition is getting worse, because there is always tomorrow.

Power

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POWER

The mind is a powerful tool
People have the power
But sometimes they are a fool
Watching time by the hour

Will it or won’t it?
I can hear their minds ticking
Then people want to quit
Cause it beats sticking

To whatever it is they are fighting
But in life, you have to remain positive
As life can be exciting
Even if your mind is a little less cognitive

So what if you do have dementia
Don’t let it stop you from living
You may have started to have dyslexia
But life is always about giving

We all have a power
It’s just how we use it
We can be beautiful like a flower
Even if our brain isn’t fit

It has to be believed
That we can fight anything
That life can be achieved
You can even go snorkeling

Just believe and have faith
That joy can be seen
Some people show their wraith
Whilst others make a scene

But it’s because they don’t understand
That we all have a choice
That life can be grand
And we all have a voice

Copywrite Tracey Shorthouse 2016

Lessons to be Learnt

Years ago one of my favourite spiritual writers was Paulo Coelho. He writes stories, but there are always lessons within these stories. His books are easy to read, as easy on the eye. I have recently bought one of his books in the hopes that I can read it.

There was a paragraph in it which I thought I would share with you.

” In life, each person can take one of two attitudes: to build or to plant. The builders may take years over their tasks, but one day, they finish what they are doing. Then they find that they are hemmed in by their own walls. Life loses it’s meaning when the building stops.

Then there are those who plant. They endure storms and all the vicissitudes of the seasons, and they rarely rest. But, unlike a building, a garden never stops growing. And while it request the gardener’s constant attention, it also allows life for the
gardener to be a great adventure. ” Paulo Coelho 2008

I always like to think of my life as being a great adventure, never stopping, just lots of nooks and crannies.

I like reading Aesop Fables for this reason as well. They are beautiful stories and have lessons to be learnt inside. Of course when you are a child, you are not aware of them but as an adult they are very much apparent.

And our proverbs which I had forgotten until recently. I go to a CST (Cognitive Stimulation Therapy) course and they were talking about them there. Those that were given to us gave me food for thought.

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.

Dementia and Me

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I wrote this poem because there is a constant fight between my dementia and me every day and sometimes its just exhausting.

Dementia and Me

Sometimes I think there is a race
Between my dementia and me
Although it is going at a slow pace
I still wish I was free

My memory used to be hot
Especially with knowledge and spelling
Now I am really not
My brain is its new dwelling

It is like having an alien residing in my brain
At times it takes control
And I feel a lot of strain
As my memories unroll

What did happen yesterday or last week
I really don’t remember
I sigh as everything looks bleak
Since I was diagnosed in December

I want to yell and scream
And tell it to go away
Maybe it is all a dream
But then again I know it will be okay

Because I am a fighter
And in control
And have become a writer
Even though I am not on a pay role

I retired as a nurse in May
Even now that is becoming a distant memory
But at least I can be gay
But the dementia still takes my energy

I hate feeling tired all the time
Having to pace myself
But I am still in my prime
Even though the books remain on the shelf

I miss reading and listening to music
Remembering and concentrating is really hard
But at least I am still lucid
And still write the odd card

My perception of things is often off
I stumble and my speech is sometimes slurred
I worry that people might then scoff
But at least my vision doesn’t get blurred

Damn you dementia! I want to yell
I want to get cross and stamp my feet
But it is only a short spell
Then I feel a bit of a cheat

As the dementia has no voice
It can neither see or hear
And I know I have a choice
But sometimes I wish I was a seer

To see how long, I have before the dementia takes over
But I think I wish to live my life to the best of my ability
And I could never be a rover
And at least I prefer some tranquility

So although my life is a fight
Between the dementia and me
I will win just out of spite
And kick the dementia with glee

©Tracey Shorthouse 2016

Wishing

I wrote a poem about all my favourite things that I love.

Wishing

I wish I was an eagle flying over head
I wish I was the sun sweeping away the dark
I wish I was a rose deep as ruby red
Or a tree with a bear rubbing against my bark
I wish…………….

I wish I was a blackbird who has a sweet song
I wish I was one of the frogs playing in the pond
I wish I was the wind blowing through so strong
Bending the branches and whistling through the valley beyond
I wish………………

I wish I was a spider weaving a web to catch a fly
I wish I was a rainbow full of beautiful colours
I wish I was the rain coming down from the sky
And helping give life to seedlings and others
I wish……………

I wish I was a fire bringing warmth to those who need it
I wish I was a star shooting across the sky to bring luck
I wish I was a child playing in the sand pit
Or going paddling with the ducks
I wish…………….

And most of all I wish I was a child seeing the world with fresh eyes
Without judgement and with much laughter. No cares !!!

Copy write Tracey Shorthouse 2016

All photos are mine. I have a tiny pond as well.as a large pond in my garden. The frogs love it. The baby bear was taken at Yellowstone Park when I was there in 2006, and the rainbow was taken years ago in Folkestone.

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