By Tracey Shorthouse
When I was first diagnosed with early onset Alzheimer’s Disease and Posterior Cortical Atrophy in 2015, I wanted something to focus on. All my life I have helped others through being a nurse, and I still wanted to do that.
The brain needs stimulation to keep going, so after the initial shock at being diagnosed and the relief that it wasn’t MS as what I first thought and feared, I took stock of what I could still do, and if I couldn’t do something I persevered until I relearned old skills. I had an occupational therapist who used to come and see me, and she got me in touch with groups that promote positivity in dementia. So I joined The SUNshiners, a network for people with a diagnosis of dementia living in Dover Deal and Shepway, Kent, UK. I also attend meetings for the Dementia Action Alliance when I can, and get involved with other things, like talks.
I talk to post diagnostic groups – people who have recently been diagnosed with dementia – and the public to bring awareness that dementia can affect all ages, not just the elderly. Last May, I gave a talk to the local police. I also go to a creative, inspired writing group weekly. I started writing a blog on Facebook, as a way to keep a journal and to help others in the process.
I started writing short stories at first to keep my brain active, but I found them too complex to carry on. So instead I started to write poetry. At first it was cathartic to write about my dementia and get it out of my system, but I didn’t want to focus on it as dementia is only a part of who I am. It doesn’t define me. So I wrote about nature, life, and then stories that came into my head as poems.
I didn’t know I was going to write a book until I showed a friend one of my poems and she suggested getting it published. Then she saw how many poems I had and it stemmed from there. I found a self-publishing company who took an interest and read my poems.
I was excited when the book was finished. I chose the cover because I love nature, especially trees and the different seasons. The leaves disappearing gradually are an indication that my brain cells are disappearing slowly, and at the end the leaves are on the ground. With nature, nothing goes to waste, and there is always a chance for things to regrow, or in my case relearn. The photographs inside are my own, taken from the area where I live. Nearly everyone who has read the book has given me such positive feedback. It’s a blessing.
I wanted the book to show anyone with a medical condition that they don’t have to give up. As a nurse, I saw too many people give up when they got their diagnosis. Life is for living to the best of our abilities. For me, it’s precious, so I am hoping that people will take what they need from the book in their own way.
A Poem from I Am Me
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
I could never be a rover
And at least I prefer some tranquillity
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
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5 Responses
What a beautiful cover!
Thank you. I chose it because I love nature and trees etc.
Yes, I love it too. Says a lot about this illness.
Tracey you are amazing I am so proud to say I worked with you and you are such a caring person and now have hidden talents !!
I admire you so much how you are coping with such a horrible diagnosis.
Lots of love from a old friend jackie Biden xxxxx
Thanks Jackie, that’s a lovely to hear. We did well working together back in the day even though it seems a long time now xxx