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Retroladytyping …

Penalised for coping …

I am sharing a post written by a lady who has early onset dementia.  She is coping fantastically well, has regular meetings with the likes of NHS high-ups, the media and those with the power…

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Penalised for coping …

 

dementia

I am sharing a post written by a lady who has early onset dementia.  She is coping fantastically well, has regular meetings with the likes of NHS high-ups, the media and those with the power to change things so we can all live in a dementia-friendly society.

In order to help her cope independently she, and her family, have put several dementia-friendly strategies in place in her own life.  This also give her the means to do what she does to raise awareness.  Now she has been turned down for PIP funding  (Personal Independence Payment) which would help her to keep her independence, to travel to meetings with those in power and, more importantly, keep her morale and dignity high.  She just cannot understand why, when she has a progressive illness and used to get this funding, it has now been withdrawn.

I am angry on her behalf and on behalf of all those  who try to keep their dignity and independence against the odds.

The link to her post is below,  outlining the reasons why she was turned down for this important funding, together with the comments  ‘they’ made on each of the points she made.  I am fuming … if you are too, please share.

It’s also worth reading her other posts.  She is an amazing person.  I only hope I can be that strong if I am ever in the same position.

Thanks for reading.

https://whichmeamitoday.wordpress.com/2016/10/28/pip-reconsideration-declined/

https://whichmeamitoday.wordpress.com/author/wendy7713/

https://www.turn2us.org.uk/Benefit-guides/Personal-Independence-Payment/What-is-Personal-Independence-Payment

http://www.advicenow.org.uk/guides/how-win-pip-appeal

forget-me-not-flower-wallpaper11

 

 

 

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Sign of friendship

Celtic symbol for friendship.jpg

I have a friend.

That friend is an unlikely friend.  He is quite different from my other friends.  Most of them are round about my age; some are related to me; some are ones I met through my children; some through shared interests and some have, sadly, fallen by the wayside as our lives diverged.  This friend won’t, I hope.  This friend is different in that he is a younger generation, unconventional, creative and complex in a way that I and none of my other friends are.  Despite that, or possibly because of that, we are friends.

We were just distant colleagues until one day he happened to overhear a conversation I was having with another colleague about our musical tastes.  He commented that I had “exemplary taste in music.”  I don’t know about that, but we do certainly share similar tastes.  That initial contact was very quick as duty called.  We were then ‘forced’ (willingly) to work together on a regular basis.  I won’t say what his job is, but he does it superbly and inspirationally well, mostly.  Mostly, until I correct him, that is.  That’s the kind of relationship we have.  I admire him tremendously but from that initial co-incidence of an overheard conversation, we have now arrived at a point where (I hope) we don’t need to tread carefully with each other – do we?  I hope he reads this and will feel free to correct me, if necessary.  I think we have enough mutual respect to do that.  I certainly do.  He once told me that I ‘enhance’ what he does professionally.  He probably doesn’t remember saying that, but I treasure that comment.  It is a wonderful compliment to me, but also indicative of his character that he said it.  To be that generous with what to him was probably just an idle  comment is unusual, precious and memorable.

Throughout our working together, we found we shared more and more of each other’s thoughts, ideas and concerns.  That is such a wonderful way to spend a great deal of one’s working life.  We grew used to knowing what the other person was going to say before they said it … finishing each other’s sentences became the norm.  I cared for him; I know he cared for me.  Nothing untoward, just shared understanding.  Then I left that job.

That worried me.  I left at a time when he was away from the job for a while too, so we didn’t get to say goodbye in the real world.  I moved onto other things, but to my delight I found that while he was away he had taken on a similar role to what I do now, volunteering with the Alzheimer’s Society.    I hadn’t even known he was interested in that.  He didn’t know I was going to do it, but he had been one step ahead of me and already started.  Of course he had.  I don’t know why I was surprised.  Our paths have crossed a couple of times through that role which has been lovely, but we have also kept in touch through the magical world of virtual media – texts and the much maligned Facebook.

Recently I asked him to do me a favour.  He has a skill which I don’t possess.  He writes poetry, eloquent poetry,  emotive and descriptive poetry which captures the essence of his subject and speaks to the reader in a unique way which is incredibly difficult to convey in any other way.  I wanted him to write a poem to commemorate a special occasion in my life.  I knew it was a big ask.  I would need to share personal ‘stuff’ with him; he would be sharing the creative side of himself with me.  Would that test our friendship in a way that purely practical favours don’t?  Taking a deep breath and with several rewrites, I sent him a message …

He instantly replied.  Yes, he would do it and would be honoured.  Honoured!  That was reassuring and not a little surprising.  I don’t know why it was surprising.  I should have known.  Of course I should.  That’s the type of person he is.

A few days later, the poem arrived.  I loved it, but there was one phrase which niggled.  He had asked me to comment and to comment honestly.  I wasn’t sure.  To criticise a person’s creative spirit is a potential minefield and what do I know about poetry after all?  Not much, but I do know what I like.  So … having sent an ‘I love it, but will comment further when I’ve read it properly’ holding message, I let it settle in my brain.  That phrase still niggled though.  I still held off further comment, then a text came.  “Have you had a chance to re-read yet?”  No hiding place.  I needed to reply.  So … I told him about my niggle, hoping he wouldn’t mind and, of course, I was hiding behind the distance of a text.

Not only didn’t he mind, but within an hour a new improved version arrived in my in-box.  It is now perfect.  He has summed up the meaning of that special occasion, without sentimentality, without cliché, without anything other than beautiful words, cleverly assembled into exactly what I wanted – a message for  a special person.

It is wonderful to be the other half of an unlikely, cross-generational friendship and knowing (hoping) that friendship will continue, favours can be asked, confidences can be shared and understanding will be at the core of that friendship.

Thank you to my poet friend.  xx

 

 

 

 

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Guest poem by Alison Bolus

This lady sums up so eloquently why I support the Alzheimer’s Society.

Which me am I today?

Today, I’m once again handing over my blog to Alison Bolus, who is 56 yrs young and diagnosed with Alzheimer’s. Alison recently emailed me this poem and when I asked if she minded if I posted it on my blog, was concerned as “I feel my musings should be upbeat”.

My own thoughts on this is that by writing my daily blog I’m hopefully showing that it is possible to live as well as we can but it mustn’t overshadow and hide the daily struggles and challenges we all face. I hopefully show the struggles as well as the positives. Media photos should show smiley happy people to show the happiness we can still have in our lives but within our stories the daily reality of living with dementia must also shine through along with the strategies we develop for adapting to the disease. It’s a fine balancing act and…

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Guest Poem by Alison Bolus….

Not written by me … but worth sharing as dementia is one of my interests.

Which me am I today?

Alison too has been diagnosed with Alzheimer’s. She is 56 years young and lives with her husband in Surrey. The writing of anything can take Alison many hours, so I’m glad she managed to put pen to paper for me………

Slip sliding away…

Slip siding away…

Oh how apposite!

Oh how befitting!

I can sense my words slip sliding away, faltering, stuttering as I fumble for the words I used to master so casually .Now they define me and defy me by slowly unraveling my thoughts, leaving my poem naked and undone.

I know that my creeping pace will soon stutter to a slower pace, and then slower still, as I sight the beginning of the end of my story.

Then the end will beckon with a slow confused trail of thoughts to capture everything together with the glue of memory spread very thinly, as if to capture everything that…

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The inspirational Mr Neate

my-english-teacherBack in the days of ‘O’ levels, my English teacher was a very unusual (for those days) teacher.  He was a teacher of the old school, complete with cap and gown, in an era of freedom of expression, freedom of thought and when conforming meant not conforming i.e. the 1960s.

Mr Neate wore a cap and gown when other teachers were wearing scuffed suede shoes, brown corduroy jackets and jeans.  He was always dressed in a dark suit, with worn through elbows and chalk dust on the lapels.  His shoes were always extremely black, extremely polished and extremely tip-tappy. He swept into assembly every morning like a short, round bat – sleeves flapping, shoes tapping,  as he marched through groups of students who were asserting their individuality by all looking the same – rolled over skirts, luminous socks, the whole 1960s look – and this was in a Grammar school, where our skirts were measured for length weekly by the Senior Mistress.

More important than his appearance, however, is that Mr Neate was a truly inspirational teacher.  He ruled by his short, round presence.  When he entered the classroom, silence reigned.  He rarely shouted.  When he did, it was because a pupil wasn’t venturing an opinion.  Whether we were discussing Keates, Chaucer, Maugham or, my personal love, Coleridge,  Mr Neate really, really loved a good argument.  His only proviso was that opinions had to be backed by evidence.  Not for him any woolly-minded ‘because I think so’ discussions.  We needed evidence; even if in his view, our opinions were misinformed.

I often took issue with him about our favourite poets:  I loved then, and still do, Kubla Khan by Coleridge.  In his view it was a drug-fuelled rambling dirge.  I disagreed, quoting lines such as “Through caverns measureless to man down to a sunless sea” to back my opinion.  He disagreed, quoting what I thought then was over romantic slush from Wordsworth.  I still think he was wrong.  Kubla Khan is sublime.  He preferred Wordsworth.   I disagreed again,  pointing out that Wordsworth knew Coleridge and joined him in his drug-fuelled ramblings on the Quantock Hills.  I think I win that one.  Who wants daffodils when you can have a cavern leading to a sunless sea?  Not me.

On some topics we did agree.  He loved Chaucer.  I loved Chaucer and still do.  The Nun’s Priest’s Tale is always a good read, funny, challenging and bawdy.  What else, apart from a little drug-fuelled rambling, can a reader want.  Suspense?

There’s plenty of that in Shakespeare, but that was where Mr Neate failed.  Those were the days of ‘O’ levels and we were in an academic environment.  Instructions  from the Headmaster meant he had to be seen to teach to the curriculum and Shakespeare was on that curriculum.  He had to provide proof that we had studied it ‘properly’, rather than spending whole lessons arguing having a reasoned debate. Hence, it was taught by reading around the class in turn, then answering past exam questions.  Killed it, stone dead, for me.

That is until I had the good fortune to meet another inspirational teacher, as an adult, and to be able to work with him.  He teaches in the same inspirational way as Mr Neate.  He encourages argument and debate, as long as it is backed by evidence.  I  argue with him, often, just as I did with Mr Neate.  I hope most of my arguments are backed by evidence; I hope they encourage the students to realise that there is no correct opinion in English  literature teaching and learning, as long as it conforms to that prescribed acronym beloved by AQA examiners, PEE – Point, Evidence, Explanation.

Teachers have to conform; they need their jobs.  However, sometimes it’s desirable to stray from the script to encourage creativity, love of literature for its own sake.  Forget the exams (just for a while), forget targets, forget homework, just enjoy words.  My friend, as he now is, does deviate from the script, but he encourages and nourishes a love of words, admiration for the different ways they can be put together to arouse emotions and the fact that English Lit lessons can be fun and, more importantly, they make you think.

He also awoke in me a renewed interest in Shakespeare, so undoing any damage caused unwittingly by ‘O’ level teaching.   That is no bad thing.

Mr Neate was different from the conventional 1960s teacher, who thought they were pushing the boundaries.  He was truly pushing the boundaries, dressing as he wanted, not as  the other  trend-setting teachers did.  He set his own trends, taught in his own way and inspired in me  a love of the written and spoken word, albeit killing Shakespeare through no fault of his own.   My friend does the same, doesn’t always conform to the prescribed structure, but his students enjoy that; they think and are encouraged to express those thoughts, as long as they conform to the  PEE structure, of course.  Not everything can be jettisoned in the days of SATS, 5* GCSEs (including English, of course) and league tables – unfortunately.

Mr Neate ignited my love of all things word related.  My contemporary friend fanned the flames.  Thank you, both of you.

 

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