Dementia Awareness Week 2023

Shunned by society in response to a medical diagnosis
Treated differently almost overnight
Ignored, skills no longer valued
Given no choices, decisions taken for you
Marginalised, made to feel worthless
Abandoned by some previously trusted and loved.
Thrown into confusion and sadness
Ignored and isolated in our busy world
Silenced, voice no longer heard
Excluded from the normal
Discarded, disregarded.

There's a reason they seem to forget lots of stuff
It's really not that I didn't remind them enough.
The falling over, bumping into things and changes I've seen,
Is about where we're going, and not where we've been.

But for now, we can laugh, prepare, tell our kids-
Who are babies themselves - how do they understand this?
Friends and family, I know, they really mean well.
"They're so young"; "they seem fine" - well that just hurts like hell!

 Our future retirement plans all gone up in smoke,
They're work, driving, sense of self? well that's a bear not to poke!
It seems they are nothing - if you watch the tv
But that's just not true - now you listen to me.

Yes, the same question is asked all day long
But have you heard that our Group has produced its own songs?
Yes, they can't interact the same way
But we still find the humour and laugh come what may.

 Yes, your relationship changes - it can be quick or take a while
And it's impossible sometimes to keep your cool and to smile
But with support and a safe space to vent with those who "know"
It's not as hard to get through it, to learn and to grow.

So, here we are, younger than 65
Kicking Dementia's ass and glad to be alive.
A positive outlook, some fun, lots of laughter
Will give us our 'different' happy ever after.

I don't want to be happy and cheerful today, I want to have a long face shrouded in a grey mist and a down turned smile. It's hard at times to put on a brave face when the other side of the coin just wants to scream and shout. Don't do this, you can't do that, you must stop doing this and you must give up that is what I hear on a regular basis. You don't look as if you have dementia is a favourite one of mine. How amazing is that, I never realised that dementia had a look. Is it possible to wear a PVC arm chair slung over my shoulder whilst wearing my trousers back to front and my boxers hanging precariously on my head. Possibly, but that's just not my style. You’re far too young to have Dementia is another favourite. I didn't realise that an illness or disease only happens at a certain age. Wouldn't that be amazing if you only contracted cancer after the age of 73 or heart disease after the age of 76? Life unfortunately just doesn't work that way, it throws you a curve ball and it's how you catch that ball and then throw it back that matters. And it's alright to have a moan and groan from time to time; after all we are human just like everyone else....are we not. So what if it takes me longer to process the information afforded to me or that my brain has to work 10 times harder just for me to be able to put one foot in front of the other. "Trish, did I take my tablets today?" Oh shit....there goes another dish and I forgot to put a wash on, empty the dish washer, put the bins out and take something out of the freezer for dinner. Never mind, we have Just Eat on speed dial and happily wearing dirty, smelly clothes is a comforting yet disgusting side effect of living with dementia. "Trish, did I take my tablets today?". Big bulging pads that are supposed to protect me...protect me from what. They are huge, obtrusive, embarrassing and can probably be seen from space. Wearing my dinner on my nice clean clothes. Coffee chicken casserole anyone. "Trish, did I take my tablets today?". Ignorant and selfish people who are not entitled to, but park in disabled parking bays anyway just to save themselves having to walk an extra 30 yards to the shop. That feeling of being left behind whilst the whole world seems to move on by without you and without looking back just to see how you are getting on. Friends who struggle with your dementia diagnosis and who stay away rather than just saying hello, fancy a cuppa. "Trish, I can't remember if I had my tablets today!". Loved one's who just want to wrap you up in cotton wool because they want to protect you forever. I love you with all my heart but never ever will there be a ball of cotton wool big enough to cushion me. There are many, many, more....however.....these are but a few of the reasons why I don't feel like smiling today. Oh and by the way, yes, I did remember to take my tablets today.

“Half way down the stairs” by A.A Milne is a favourite poem of mine,
Whistled and sung and echoed through my sad and happier times.
Yes “halfway down the stairs” was truly where I landed with a bump,
Which way should I go? Just slip down or climb back up?

 A lucky lady: my life filled with family, friendships and career,
Gently slowed as the memory and concentration seemed to disappear.
Surely it was just a sign to slow down, live at a more gentle pace?
But no: it became clear dementia had dared to show its face.

Disbelief fought the harsh facts
Compliance met defiance,
Yet days and weeks passed and reality became an acceptance.
Disappointment and frustration as society lost my worth,
It seemed there was no longer a place for me in the purpose of the earth.

One door closed so hard my nerve very nearly broke,
But another gently opened: a new fire beginning to stoke
In my soul, as the world, despite my worries
Continued to revolve
Taking me along with it bringing
Opportunities and new resolve.

New connections were forged, lifelong friendships started to form,
With organisations and individuals who see beyond the label and the need to conform.
Dementia put in its place by heads and hearts
Burning with optimism,
DEEP and STAND are beacons that shine
Through society’s pessimism. 

Now life is full and the days have purpose and satisfaction,
The new reality is that dementia is a diagnosis
Not a definition.
Technology plays its part ensuring full
Engagement and enjoyment,
Wondrous people top this up bringing hope,
Opportunity and personal fulfilment.

So halfway down the stairs is no longer where I am,
I have climbed back up, at least for now, as high as I can.

 Dementia brings uncertainty but I’m not alone
In this life-size puzzle,
Everyone faces challenges as through life we each ungraciously fumble.
Each new day is a blessing on this path of life we follow,
Because today is just one stair away from my wonderful tomorrow.

Flower - is it a flower or a weed?

Traffic noisy.

Bit of driftwood.

Kids playing.

Quite cauld eh?

Holly for Christmas time.

The dark nights are coming in.

But the sun is shining on us, the heat in the sun.

Purple flowers and a wee thistle.

The flag pole.

A daisy - we used to make daisy chains.

Benches locked together like friends.

A pink carnation and the last of the summer wine written on a green background.

A white feather - a wee message from heaven.

From a tiny acorn
Has grown a huge oak tree.
A portrait of natural beauty
Standing proud for all to see.

A monolith supported
From a base both strong and sound.
With roots spread out like fingers
Far and wide beneath the ground.

A trunk so thick and rigid
Plumb and true, straight as a dye.
With branches reaching outwards
Straining up to touch the sky.

 One of nature’s emissaries
A monarch fearless and bold.
But this proud and ancient tree
Has a sad story to be told.

It bears the scars of many
Human soles that have been lost.

Its trunk in places stripped of bark
Where men and tree have crossed. 

A slight error in judgement
Both in direction and in speed.
Has lead to the loss of many a sole
By what was once a tiny seed.

So in memory of these spirits
In plain site for all to see.
Is a swathe of flowers laid with care
Around the base if this ancient tree.

Eventually all things must pass
As days and months go by.
Those blossoms laid for loved ones lost
Slowly wither and die.

And as the flowers breathe their last
So they rot and decompose.
Yet out of all this death and decay
An ancient oak tree grows.