SallyP

Retroladytyping …

God Jul. A Christmas Story    

 

Sharing this post which was written by a friend.  I wish I had written it.  I love the contrast between the harshness of dementia with the softness of the kissing nurse, the doe and the fawn.  There is always a way to connect with those experiencing even the later stages of dementia.  It  needs understanding and respect for the person within as they are, rather than frustration for what they have become on the surface.  Thank you, Tom, for writing it and reminding me.

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What follows is a Christmas story. I have written it for all of the lovely people who read my blog. Thank you all. Wholeheartedly. Tom Tide. ————————…

Source: God Jul. A Christmas Story.

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My biro has run out of ink …

empty-biro

I started this blogging lark, on a whim, just over a year ago, following the example of a friend who lives to write  (at midnight, as all the best writers do).  I’m not sure why I did, other than sometimes it helps to clarify my thoughts by writing (ok, typing) them into some sort of organised, hopefully coherent, order.

However, over the last few weeks, probably months, my metaphorical biro has run out of ink.  I can’t think what to write, how to write it in any case, and most importantly – why to write.  Some of my posts had hundreds (yes, really) of views, some had just a few, but I could guess who those viewers were and they were much valued.  In turn I started following several other bloggers, some of whom I knew, some I didn’t; some have fallen by the wayside;  some favourites I have commented on, always appreciatively, but lately those comments have been deleted, or, to use the word which WordPress use,  trashed.      I never do that, unless comments are offensive, which has only happened once, but some people, apparently, do delete my comments or dismiss them as Spam.  There you go, in the bin.  Spam.   Trash.  To be forgotten.  Pity there was no feedback.

Anyway, to return to the main point, my biro has run out.  Ideas have dried up.  I really don’t know why.  Maybe it’s the weather, maybe it’s the lack of light (the Winter solstice is very soon, so there’s hope on the horizon); maybe nothing much has happened.  Scratch that last thought, maybe it’s because so much has happened.  2016 has been a year to remember, a turning point in the world’s history perhaps.  Is that why I can’t think of anything; there are too many things?

In my own life, everyday stuff keeps on keeping on.  I have written about those, but am now struggling  to relate them in a way which others who are not familiar with my life might find worth reading.   My life is pretty ordinary really; my thoughts are those which others have, but don’t feel the need to describe while sitting in front of a laptop.  I felt that need.  I don’t now.  My biro is empty.  It was only a cheapie from a multi-pack, but even so, it was my biro and I shall miss it.

One more thought:  maybe I need one of those multi-coloured jobs, which I have always wanted, but never had, along with a mini-Cadbury chocolate bar machine.  Not long till Christmas … just saying …

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cadbury-chocolate-machine

 

 

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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

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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…

Source: Penalised for coping …

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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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