In September 2012 Karen
Patrick walked part of the Great Wall of China for Dementia Care.
Her story is related in her book 'Scaling the Dragon's Back' which is available from Amazon for Kindle, Barnes and Noble for Nook, on Kobo and on all other formats from theendlessbookcase.co.uk
Her book is sold in support of Dementia Care.
As I know from the personal experience of my mother when caring for my step father who passed away having suffered from Alzheimer's for many years, the world can be a very lonely place for the sufferer and the main carer of this terribly cruel illness. Both become isolated their friends slowly disappearing as this dreadful illness progresses.
The developed world is sitting on the time bomb with its increasingly ageing population. Statistics for the UK alone, provided by Alzheimer's Society state:
- There are around 800,000 people in the UK with Dementia.
- There will be over 1 million people with dementia by 2021.
- There are 670,000 carers of people with dementia in the UK.
- Two thirds of people with dementia live in the community.
Friends may have good intentions to begin with but as the dementia sufferer becomes is increasingly unable to express themselves, their behaviour becoming more and more erratic as the illness develops, friends and relatives visits become more infrequent eventually dropping away altogether. BUT, the carer of the dementia sufferer needs their friends more than ever, someone to talk. Contact with friends is vital for the carers own health and well being.
Many friends and relatives say they prefer to remember the sufferer as they were before the onset of the illness. And no doubt it is emotionally challenging and painful to see someone they know, who probably now no longer recognises them 'alive on the outside but seemingly dead on the inside.' Many find it uncomfortable to sit in silence when a dementia suffer hardly speaks or when they are confused constantly repeating themselves, often their conversation making no sense. Friends of the carer find that conversation with their friend becomes impossible given the often disruptive behaviour of the sufferer, which is disturbing, and demands so much attention from the carer.
A common comment from those caring for dementia sufferers, most often but not exclusively, the partner of the dementia suffer, is that "no one visits anymore." Apart that is from professional carers and Admiral Nurses, if they are lucky enough to live in an area providing this specialist dementia care.
I feel there needs to be a massive worldwide awareness programme for all of us in society; the general public, front line customer service staff (in shops, bars, restaurants, libraries, etc.) in how to deal with and behave toward dementia sufferers. We will all in future need to be better prepared and skilled to assist dementia suffers.
In the meanwhile we need to be doing a lot more to provide help and support to both dementia sufferers and their carers. It was for this reason to try to help in a small way that I chose to raise funds for Dementia UK, Admiral Nurses with my trek of the Great Wall of China and subsequent publication of my ebook "Scaling the Dragon's Back'.
I found the poem 'Alzheimer's Request' below, forwarded to me by a friend, deeply moving. It seems to say all that is necessary on behalf of sufferers.
This is my first blog in a series on this topic. [If you wish to contribute to future blogs please send your thoughts as a comment on this blog].
ALZHEIMER’S REQUEST
Do not ask me to remember
Don't try to make me understand
Let me rest and know you're
with me
Kiss my cheek and hold my hand
I'm confused beyond your
concept
I am sad and sick and lost
All I know is that I need you
To be with me at all costs
Please do not lose your
patience with me
Do not scold me or curse or cry
I can't help the way I'm acting
I can't be different though I
try
Just remember that I need you
And that the best of me is gone
Please don't fail to stand beside
me
And love me 'til my life is
done
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