Lyrics for dementia and a poem for autism

Here are the song lyrics I mentioned in the post I wrote yesterday, the ones which are included in the ‘autobiography’ of a man I met at an Alzheimer’s Society memory cafe. The song is one of 3 on a CD I have recorded to raise awareness of dementia as well as funds for the Alzheimer’s Society.

I have also included a poem I wrote for publication in The Mortal Man, a book of poetry inspired by a young autistic man who lost his life at the age of 19. Details of the book, being sold in aid of the National Autistic Society, are here http://www.lulu.com/gb/en/shop/jae-alexander-linsey/the-mortal-man/paperback/product-21004984.html  The poem was written with the help of disabled adults in the Skills for Life Performing Arts Group, Wolverhampton which I used to run until we lost our funding.

Thanks for reading.

I hope you’ll listen to me

I want to tell you what I’ve lost
I hope you’ll listen to me
I want to help you understand
why I cannot be free

I struggle to do the simplest thing
I’ve done a thousand times before
like opening a can of beans!
I feel confused and insecure.

I’ve lost the skills I used to have,
I lose my way, forget my name,
lack independence, confidence,
I feel embarrassed and ashamed

I want to tell you how it feels
I hope you’ll listen to me
I want to help you understand
why I cannot be free

I’m isolated, agitated,
muddled and exasperated,
scared to speak in case I’m wrong,
stigmatised, humiliated

All because of this disease
which any one of us could get,
a tangling up which kills the brain
slowly, surely, bit by bit.

I want to tell you how to help
I hope you’ll listen to me
I want to help you understand
why I cannot be free

Please don’t treat me like a child
or tell me what to do and say,
I’m not stupid, I do my best,
dementia doesn’t go away.

Please have patience, please be friendly,
show me that you understand,
treat me as you would be treated,
if I falter, hold my hand.

I want to tell you about the people
who help me to feel free,
friends and family, those I meet
who empathise with me

Those who help me every day,
welcome me and care for me,
cope with me without complaining,
help me to live normally

or near to normal as I can,
who talk to me and make me smile,
people living with dementia,
my dementia, all the while.

Those who listen with affection
as I struggle with my words
try to understand my message,
making sure that I am heard.

© Heather Wastie
April 2014

Autistic Spectrum

Draw an imaginary line
from the North Star
to the ground

Walk along the line
your routine
never changing
cut and dried

The star is fixed
the straight line
your boundary
a spectrum of blocks

Only the strongest
defy the magnetic pull
turn the line by 90 degrees
so it becomes

a bar to be raised
a barrier to be opened
a frontier to be crossed

© Heather Wastie
January 2013

The arts make a difference – how do I know?

Recently I’ve been performing and running workshops with older people in care homes, people with dementia and young people with disabilities. In these settings it can be difficult to know what the impact has been. So how do I evaluate what I have done?

Working for other organisations usually means there’s an evaluation procedure at the end and this is always valuable. There’s a lot to be learned from evaluating, from everyone’s perspective, and people who do the kind of work I do need also to be reassured that they are on the whole getting it right. A recent project in a care home, commissioned by Wychavon District Council, ended with these wonderful words which boosted my confidence. (You’d think by now I wouldn’t need that, but I do!)

“The poetry with Heather was a big success. Heather has set a spark amongst our residents and inspired us all to have a go at poetry. Everyone who attended these session has asked me to re book Heather for more groups. She had everyone in the room hanging off her every word, we had funny moments and thought provoking moments …. She talked with the residents and everyone warmed to her straight away. What a wonderful woman she is. I hope she will be coming here for many years to come.”

When working with people who aren’t able to express themselves in words, it can be more difficult to assess the impact. This week, 2 people in particular have demonstrated very positive reactions. During a session yesterday, a young woman with severe autism who had stayed in her chair for all of the previous sessions, came up and danced with me then later stole my tambourine and sang Yellow Submarine whilst tapping a rhythm in perfect time. She thought it was hilarious, the rest of the group joined in and I was so pleased that we had made such a connection. This session was part of a project run by Creative Health http://www.creativehealthcic.co.uk/ who commission arts and health work in the West Midlands.

This morning a man with dementia danced, hummed and whistled as I played my song Alzheimer’s Army which –  ahem – is available on CD with 2 others songs to raise money for the Alzheimer’s Society. You can listen to the song here https://soundcloud.com/heatherwastie/alzheimers-army-by-heather-wastie. Contact me for details or come to one of my performances; I always have CDs with me. Here’s a link to my performance diary http://www.wastiesspace.co.uk/Wasties_Space/DIARY.html.

Another man this morning (at an Alzheimer’s Society memory cafe) thanked me for the lyrics to one of my other dementia songs, written especially for his group. He keeps it in a folder which he described as his ‘autobiography’.

All of this shows how much difference the arts can make and I’m so lucky to be able to use my skills to be one of the many people out there making that difference.