Inspiration I take from other people living with dementia.

I just have to share this with you all.   My friend Truthful, whose blog I have referred to before has worked hard on putting together thoughts from us people living with dementia to show some great positive stories.

She asked me if I would answer some questions and whether I would mind them being shared globally.  Of course I don’t mind.

Today, I see she has posted a list of positive stories on her page and I was so inspired reading through them that I want everyone to see them.

Each of us have different types of dementia, we live in all parts of the world and have different stories, BUT each one of us feel strongly about education how we live well with this disease.

Please take a look and read through our thoughts, the link below will take you to the page.

She has called it:   PWD (Person With Dementia) Success Stories

Thank you Truthful, you are truly inspirational in your tireless work for Dementia education.

 

Do not smile with pity in your eyes

Do not smile at me with pity in your eyes
because then I see an empty heart
Do not write with sadness in your tone
I can still feel every word you write
Or speak in a way that simplifies your voice
in case somehow I have lost my intelligence

When you think of me look at who I am
not who I was when we bounced against each other
Remember the times we had being creative
laughing and talking till all hours
Tthrowing our dreams in the air hoping
to catch them when they floated close enough

Listen when I speak to you because I am still here
I can still feel the same when you discuss a thought
I can still laugh and throw ideas your way
You may see a few cracks but don’t dwell on them
enjoy what I still have and am inside
Understand what I have to say is important
worth a serious listen and response
as you would anyone else in conversation

Think of me with the love of the friendship
we have embraced before, secrets we shared
happy days, the troubled times we put to rest
Now bring that to our communication
A knowing smile, words special to just us
Remember my personality and understand me
Its still lurking in me waiting to peek out
and surprise you.

How do you reach someone who appears a shell?

Speak to me with music that I listened to
being collected on my iPod ready for use,
Speak to me with photographs that I have taken
perhaps seemingly random but
those decaying buildings held sway for me once.
Read to me: poetry, a crime novel, no romance please
George Elliot; my favourite classical author

Know me, that I am not a stereotype
When touch is important, know that I HATE it
Unless I have a manicure or pedicure
Know me in dyspraxia and dementia

Brush my hair I love that feeling
Give me my 18” of personal space
know me that I needed that once

Know me that I love all things alternative
and that my sense of humour may be dark

It matters not
that you may not see these things in me
But know that is what shaped
my personality to the person I became
And to each of you, dear friends
I showed you a side that remained yours alone

So
Do not smile with pity in your eyes
Let me see instead, love, understanding
or a wonderful wickedness of a life enjoyed

Apathy and the constant challenge of challenging myself!

Some days need more of a challenge than others as I slip into an uncomfortable numbness.

The hot humid summers days have cooled. I welcome the coolness outside having hated the heat which exhausts me, but with the coolness and the humidity comes the pains in my joints especially my shoulders right now, but ok I can take a paracetamol, after all you can’t have everything.

Its Monday morning and I get out my medicines to fill my weekly box and blow me, guess what, I have forgotten that I needed to collect the remainder of my Rivastigmene from the chemists!   Good grief, have I not just gone through this a short time ago.  So, not only did I forget to order my prescription, which came in two parts, I have forgotten to pick up the remainder of it , how could I not have remembered that one?   I was going to write ‘what is wrong with me’ but thats laughable.   

The past few days I have been feeling apathy and something I can’t quite put my finger on and feel upset with myself for not overcoming it.

Maybe I am feeling apathy because I have allowed myself to sink into a routine that is so comfortable it is not challenging?   Maybe, my brain is just having a rest, maybe its part of Alzheimer’s depression (I don’t remotely feel depressed or less than happy).   I have somehow not phoned my family, friends, or kept up to date with anyone.  I realise that for me sometimes it is a real struggle to do these things, how do you explain that I can get ‘scared’ to make that call, or chat.  I don’t understand it myself only that once I do it, all is well, and I think what was all the fuss about.  

One thing I know, keeping positive is a challenge on a daily basis, and somedays I don’t manage so well.

Yesterday whilst the weather was on the edge of turning into rain, I took my camera out to take some photo’s and to check what the farmers had done to the field next to us.  For the past few days our eyes have been watering and we are told that they have been spraying lime on the fields and unfortunately the wind has been in our direction.   Having listened to the tractors early in the mornings I thought they had been ploughed but see that they are working through the patchwork around the marina spraying.   

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Last year the fields were planted with potatoes, this year oilseed rape, I wonder what will be in there next year?

Photography and friends

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My lovely friend on the very top of Snowden Mountain in Wales, UK

Having recently lent my camera to my friend whilst we were on holiday, I have learnt a little more about camera’s and photography through my dear friend of 30 years who is recovering from breast cancer and is an inspiration with her cheerful outlook to life.  I lent her my Panasonic Lumix G5K, set it on iA (automatic) for her showed her how to focus in on a subject and away she went.  David Bailey eat your heart out!  Not only did she take good photographs, her photographs were well thought out.  Her home life is not pleasant, so it was such a delight to see her come alive with enthusiasm.  She said she did not know she loved photography until she was given the opportunity.  As I talked to her about camera the bits I found I knew and realised that I am slowly learning more and more even it is taking a long time.

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A dandelion to be captured!

Every time I turned round Sheila was bending over or on her knees photographing some flower on the side of a road.

Having realised that she can no longer work at her three cleaning jobs anymore she has been looking for some purpose for herself.  This is a woman who gives all of herself to others, feeling that she herself should take second place…it breaks my heart when I think of how miserable her life is at home.

On holiday she bravely left off her hat unless the wind was cold!   “Nobody knows me here” she said “so they won’t laugh at me“.    “They laugh at you because you have had cancer?” I asked her, and she gave me a look that understood what I was saying.

When we got home, I set about printing out her photos for her.  She does not have a computer and is not technological in any way.  At present she says she would never learn how to use one…we will see 😉  Whilst we were away I ordered paper and inks ready and set about printing the 600 plus photos she had taken!!  When we viewing on my laptop she would say “I want that blurred one, because I took it as we were driving in the car“.  It has taken several days and I finally finished having got through two and a half packs of inks.

We will take them to her next week, (sadly we live too far apart to just ‘pop round’ with them)  and I can’t wait to give them to her.

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Bee on flower taken by Sheila