SallyP

Retroladytyping …

The Dementia side of my trip to Birmingham……

 

An insight into how a person living with dementia copes with things most of us take for granted.  She is incredible.  Written by a lady with the pen name  Which Me am I Today?  She has early-onset dementia, despite which, or probably because of, she  is doing an incredible amount to raise the profile of dementia, what it means in everyday life and what others can do to mediate its effects.  Her other blog posts are well worth reading for anyone with an interest in dementia.  They should be required reading for the authorities who think that because she is coping, their job is done.  It’s not. 

                                                                                                                                                                               

 

Some people ask me how can I possibly do all the things I do on my own when I have dementia…..so today I thought I’d give you the dementia side of the trip I described yesterday……….. I received the…

Source: The Dementia side of my trip to Birmingham……

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Hey, that’s no way to say goodbye …

cohen-2

… but maybe it is …

RIP Leonard Cohen – gone to The Tower of Song

Today I woke to the news that the poet, author and musician, Leonard Cohen died yesterday at the age of 82.  He has been referred to by those who don’t know, as the singer to “slit your wrists to,” beloved of depressed students in the 1970s.  I disagree.  His music, to me, was music which helped, helped when feeling sad, helped when feeling contemplative,  helped during difficult times and encouraged reflection in times of contentment.  More than anything else, his music and words were reflective:    He  shared something of himself and his own thoughts and feelings, so making me, for one, feel that I wasn’t the only one feeling as I did.  His music made and will continue to make me feel many things – just ‘better’ sums up all those.  He was a soother and a healer.

I wasn’t one of those so-called depressed students; I came to his work later in life,   during a difficult time.  I heard the song “Hey, that’s no way to say goodbye” on the radio, during a sleepless night. I am so glad I did.  I still remember that moment as one of those stop what you are doing and listen, listen properly, this is special, moments.   Crying (with a little bit of self-pity) to Hey, That’s No Way to Say Goodbye was cathartic.  Singing along, loudly, to his music while in the car was, and always will be, my therapy.  There was a time when my car started with the sound of that unique voice.  A Cohen CD was permanently on ready for me.  That will happen again later today.  Thank you Mr Cohen, you helped the rawness heal.  Pressing the replay button repeatedly is sometimes more effective, and less toxic,  than medication.

His words, his music and his presence were, and will continue to be true poetry, giving solace and, above all, hope, rather than encouraging giving up, or “slitting wrists.”   Who can argue with “There’s a crack, a crack in everything.  That’s how the light gets in”  from Anthem, especially now with all that is happening in the world.  There is hope. Still.

I was lucky to be able to see him twice, live.  The first time was at an unlikely outdoor venue,  Brooklands Racetrack at Weybridge, in July 2009.  It rained, how it rained!  As Leonard Cohen said, as he came on stage, “It’s a bit fresh.”  It was.  We were soaked,  but we didn’t care.  As he sang/spoke A Thousand Kisses Deep, we were mesmerised.  Everyone there was.  A 75 year old gentleman holding a soaking wet, bedraggled crowd in the palm of his hand. You  needed to be there (or check YouTube) to appreciate that.

I’ve referred to him as a gentleman and I can think of no better example than his manner towards his supporting acts and his backing singers, one such being the “sublime”, according to him, Webb Sisters.  This clip, from YouTube says that far more eloquently than I can.    His respect for others and his generosity of spirit towards fellow performers, as well as his audience,  always shone through his performances.

We were also able to see him at Bournemouth NEC – a large venue and we were sitting at an angle to the stage.  That didn’t matter.  His presence transcended all that.  He reached every corner of that arena.  He spoke, we listened.  He danced, we watched.  He doffed his hat to his supporting singers, we applauded.  Best of all though, he sang to an awestruck audience, we listened, until the silence at the end of each song, when we paused to absorb the beauty of his music and his charismatic presence, before breaking into rapturous applause.

Throughout both of these shows, and it’s clear on my London Live DVD, he is humble, can’t quite believe the audience is there, they are there for him and are in awe of his genius.  He would disagree with that word, I think, and it is much over-used, but I can’t think of any better to describe someone who can ‘hold’ a crowd of thousands just by raising his hat.  He could and did.  That hold was  tightened as the first notes of his deep, gravelly voice were heard and increased its grip till the echo of the final notes died away.  That pause, that silence – awesome, or to quote him when referring to The Webb Sisters,   “sublime.”

.His son, Adam, quoted “Hey that’s no way to say goodbye” today in a tribute to his father.  I think it was just the way he would have wanted to say goodbye.  He had just released an album, was writing till the day he died and had said goodbye in a beautiful, moving poem to his muse and great love, Marianne.    Words never to be forgotten, along with so many others, as well as thoughts and emotions, portrayed in words and sounds by this incredible man.  If you don’t click on any other link in this blog, please do so on this one.  As a friend said when I shared it with him:  “Those hands!”  Indeed, those hands.

http://www.rollingstone.com/music/news/leonard-cohen-pens-final-letter-to-so-long-marianne-muse-w433144

While I am typing this, I am listening to a Cohen tribute on the radio, which has  made me feel that anything I write is only a drop in the ocean.  There are so many words, so many phrases – musically and written – that I could share.  Each memory on the radio triggers one of my own.  I can say no more to do him justice.

I am very sad today,  and may not feel like listening to his music , but I will and will be grateful to have heard him, seen him and to have read his poetry and writing.  He has left a wonderful legacy.

cohen

birds

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Dear DWP………

 Penalised for coping … part 2

An update to the post I shared about a lady who has been refused Personal Independence Payment, despite the fact that she has dementia.  The DWP’s decision was based on the fact that she has been able to put strategies in place so she can retain as much independence as she can, for as long as she can.  Basically she is indeed being penalised for coping. This is her follow-up post … I can’t improve on it.  Please read and share if her situation strikes a chord with you, makes you angry, or if, like me, you admire her  determination. 

 

The real impact on real people’s lives……….. Ok, so now you can smile, now you can place a tick against another statistic you’ve won, after all we are just a number to you – a number to win or…

Source: Dear DWP………

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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

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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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Cheers our kid

Nick and Sal.jpg

Aged 6 and 5

 

My brother and I always refer to each other as Our Kid, joking that it saves remembering each others names.  In truth,  it’s  our way of expressing our love for each other  and appreciation of the fact that we’ve grown up together. 

In a couple of days time, my little brother reaches a significant big zero birthday.  How on earth can that be?  How can he have progressed from the very smart, hand-knitted cardie wearing, hair brushed little boy in that photo, without his big sister noticing?  As the eldest, my job is to keep an eye on such things.  I become distracted for a few decades and he gets all grown-up.  Along the way,  we  acquired a little sister, but we were almost teenagers by that time, so our formative years were spent  together, arguing, making up, fighting – even punching and biting – me, not him.  I wasn’t the most patient and understanding child.    My poor little brother sometimes felt the brunt of that.  Sorry Our Kid.  I hope the scars have healed.

Having survived growing up with two sisters, he has become one of the most reliable, sensible and level-headed people I know.  People who know him describe him as “the salt of the earth” and he is, he really is.  Everyone in his local area knows him.    Walking with him through his village  is never a speedy undertaking.   He’s greeted by all and sundry with a wave and often stopped for a chat, or asked for a favour.  He knows everyone, their families, their history, their jobs and they know, and trust him.  I’m proud of you Our Kid.

We’ve been through some tough times:  the usual stresses and strains of growing up aside,  in the last few years we’ve coped, alongside our  sister, with the illness from dementia  and then the deaths of both our parents.  For a couple of years, our family life was  very unsettled, worrying and even frightening, but through all that Our Kid was the rock in the family.  I know that’s a cliché, and if I can, I shall think of a better metaphor, but he is solid and reliable, so it seems appropriate.  There were quite a few times, when having visited our Mum in hospital,  I phoned him, in tears at what I had seen and heard.  Despite being busy,  (usually under a car – he’s a mechanic)  he took my calls and proceeded to calm me enough so I could drive home safely,  promising that he would phone me at a particular time that evening.  Right on cue, he did.  Thanks Our Kid.

While our parents were ill, he did most of the administrative jobs, methodically, calmly and efficiently, so my sister and I were largely spared the stress of that.  Setting up a Power of Attorney, selling a house, sorting financial matters –  complicated, stressful and not easy, particularly for someone who is known more for his prowess at practical tasks.  Maybe that’s why he could do it so well.  He tackled it  like a project, keeping methodical records,  making lists, ticking tasks off as completed and updating us constantly with progress.  If he wanted help, he asked, but that wasn’t often.   All we had to do was to sign on the dotted line.  That meant we could focus on visiting Mum in hospital, occasionally taking issue with medical professionals and arranging care for her,  knowing that other important tasks were being taken care of. Our roles weren’t always  as arbitrarily divided  as that seems – we shared when necessary, requested or desirable.  We never argued, despite all the emotional and practical strains that having two parents with dementia entails.   He was also the primary visitor for our dad.  I found that difficult for all sorts of reasons, so didn’t go so as often as I should.  He did and took care of their house and garden.  Couldn’t have got through it without you, Our Kid.

I mentioned that he’s a mechanic, and of course he’s the best.  He’s being paid to do something he does so well – mending broken items, as he does people.     He loves his job, loves engines, bikes, his garden, but most of all his family, who are (cliché alert) a credit to him.  It’s a testament to him and my sister-in-law that, despite being grown-up and with busy lives of their own, all his four children visit often, depending on their dad (and mum of course) for advice and a proper Sunday Lunch.  They also rely on him for practical help when setting up their own homes They know, as do I, that he will turn up with his toolbox and fix things, just as he can fix a tearful older sister.  Dependable, that’s Our Kid.   Quite rightly and justifiably,  he is  proud of his family and their achievements.  Well done Our Kid.

Apart from fixing things, his obsession hobby is his bike, cycling and everything which goes with that.  He is definitely A Middle-Aged Man in Lycra and the owner of one of those bikes which weigh next to nothing, has tyres as thin as my little finger and don’t even mention the saddle.  As I write this, I have a vision of him standing at our back door on my birthday, lycra-clad, with his bike leaning up against our fence, holding out a bouquet for me.  He cycles from his home, the long way round of course, to our home with the bouquet in his back-pack most years on or around that day.  I’m not sure what passing motorists make of the sight, but he doesn’t care and neither do I.  I love it.  I’m still worried about that saddle though … and those tyres are never safe, surely?  Ride safely, Our Kid.

Now he’s going to be 60, but he’s still my little brother.  I’m very proud of him, grateful to him for being the reliable, steady, but never boring man he is.  You’re great Our Kid.  Don’t change.  Also don’t stop calling me Our Kid either.  There is little else I’d rather be doing around teatime on a Saturday  than answering the phone and hearing the words “Hello, our kid.  How’s things?”  Half an hour or so later, when we’ve caught up with all our news,  hearing the words “Cheers our kid” and saying them in return,  makes me feel that all is well in our part of the world.   I feel secure knowing that Our Kid is around.  Thanks Our Kid and Happy Birthday.   Love from Our Kid (and Our Kids’ Little Sister and Our Kids and spouses, not forgetting your Great-Nephew) xxx

Tracey, Nick and me.JPG

Big sister, medium brother, little sister

 

 

 

 

 

 

 

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