The Two Faces of Twitter – a heartwarming Christmas story

My husband, who’s been involved with politics one way or another for over 30 years, looked at his Twitter feed a few days before the general election and said he’d never known such a vitriolic campaign. I wearily agreed.  It’s been an unedifying sight watching politicians and others slugging it out on social media.

In the wake of the Conservative’s win last week, the Mail on Sunday ran a double page spread under the headline, “Toxic Twitter”, claiming it fueled political extremism and debased debate.  Given the 240-character limit of each tweet, this may well be true – pithy one liners hardly make for nuanced arguments.  But fear not, I have no intention of going into the politics of Twitter here.

Instead, in this season of goodwill I bring you unlikely tidings of online comfort and joy.  For Twitter has two very different faces.

Two days before the Mail’s characteristically provocative piece an old pal of mine direct tweeted me (along with three dementia organisations):

“Anyone have any ideas for family Christmas games we might be able to play that can involve and include my father, who has Alzheimer’s disease, please?”

Within minutes the good folk of Twitter – yes, there are lots – came alive with suggestions for my friend Neville, aka @PompeyNev.

“Sitting, hugging, holding, talking, listening. Try throwing a balloon or something very simple. Games aren’t important and can create a great deal of anxiety and insecurity. Just include them in everything and don’t treat them differently,” tweeted @bradboyqld.

Trish Dainton, aka @TDainton, wondered if my friend could look up record charts for when his father was about 20 years old.

“Type (large font) & laminate titles & artists of hits”, she tweeted. “Cut titles into 3 parts. Group/artists into 2. Jumble up the pieces (having kept note of answers) & see how many hits can be found? Take a turn then & play track via Youtube”.

What impressed me was the time and consideration that went into the myriad responses.  People really wanted to help – to share their experience and knowledge.  To make a difference.

@Mycarematters told us that Bradford Hospitals’ Charity has set up an Amazon wish list of games for those living with dementia in their care, which you can see here.  How fabulous is that.

This is the other face of Twitter, the beneficent one that’s not talked about much in the tabloids, who focus their laser-like gaze on how the platform allows bullies to hide behind their screens spouting hateful comments they’d never have the nerve to say to anyone in reality.  Don’t get me wrong, this certainly happens.

Just as it’s true that all social media serves, to use that hackneyed phrase, as an echo chamber.  We choose who to follow, so tend to see our own views reflected back to us in a never-ending hall of mirrors that reinforces our view that we are absolutely, definitely right and everyone else is blatantly wrong.  But one person’s echo chamber can be another’s community, as my pal’s tweet for dementia-friendly Christmas games so vividly illustrated.  The suggestions kept on coming, including this one from John Reed (@johnreedtutis).

“Name that tune would be good.  Suitable for all, you choose the music, make a play list and play one at a time.  Great fun as anyone, dementia or not, can play.  Small prize at end, plus bonus points for singing along.  A great memory jogger too”.

In one of my earliest blogs I described Twitter as a “fabulous global cocktail party” taking place on the Internet, introducing people who would otherwise never meet.  Friendly groups such as #AlzChat and #DiverseAlz gather in this virtual space for regular chats (Mondays and Thursdays at 8pm GMT and 3pm EDT to be precise – simply search for the hashtags and you can join in).

By coincidence the subject of the most recent #AlzChat was the importance of Twitter chats for those living with dementia and their carers.  The topic created a buzz and Tommy Dunne summed up just what the online meet-ups mean to him:

“#AlzChat When no one phones and I’m alone there’s a place that I can go to communicate with people I now know, a place where they will listen and will not judge”.

Tommy, aka @TommyTommytee18, lives with Alzheimer’s.

Researching a Guardian article a few years ago I interviewed the then 65-year-old wife of someone with dementia.  She told me she felt trapped by her husband’s condition, likening her situation to that of a mother with young children, but without contemporaries in the same boat.  Facebook and Twitter help carers to connect with others facing the same daily challenges.  She and I share posts on Facebook, we connect.  Occasionally we – whisper it softly – actually meet.  In person.

Social media has the power to reach the parts that others can’t.  Yes, it’s used to disseminate lies, breed hatred and fear – but to be honest it’s the individuals involved who do that, not the platform itself.

The negative, nasty face of Twitter is well publicised.  But let’s not forget its positive side.  Used well, it stimulates connectivity, forges friendships and is a joyous force for good.  I don’t know about you, but I’m very happy to raise a festive glass or three to that.  Real, ice-cold bubbly ones mind, not your frothy, virtual nonsense.

#MerryChristmasAll!

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The Longest Farewell

The Longest Farewell is a hard book to read.  It is also an important book with a profound and, against all the odds, ultimately hopeful message.

In it, Nula Suchet speaks the unspeakable: she rails against “the bastard dementia” that afflicted her late husband James Black aged 57, leading them both on what she calls “our journey to hell”.  The pages hum with anger, frustration and guilt – yet her tale ends with a magical twist that renews our belief in the power of humans to connect, even in adversity.

In telling their dementia story warts and all, Nula highlights the common themes that crop up so frequently when I speak to those affected by the condition, either directly or indirectly.  There’s the drawn out diagnosis; the impersonal manner of some medical professionals; the diminution of identity.

“Dementia is destroying everything.  My marriage, my dreams, my finances, even myself.  Everything is subsumed by the soul-crushing grind of being a carer to the empty shell that is now my darling James”.

It is raw, uncompromising language, riven with pain.

Even more chilling is her family’s reaction when she and James leave their home in Ireland to find residential care for him in England.   No one says goodbye.  Nula thinks this is because they don’t know what to do or say.  “It is as if he’s become a non-person.  If he had been diagnosed with cancer they would see him as a brave battler, but dementia frightens them”.   I’m sure she’s right.  Dementia used to frighten me, but it no longer does because I have a much better understanding of what it is.

Nula’s love for James sustains her, just – and music is one of the last things she refuses to give up on for her opera-loving husband, who’d been a highly successful television director and writer.  In the early stages of dementia he wept when she played him CDs of Tosca and La Bohème – responding viscerally to one of the greatest joys of his life.

When she takes James to live in a care home she puts on The Marriage of Figaro, his favourite Mozart opera, and immediately he stands up and starts conducting the music, a huge smile on his face.

“I can’t breathe.  I move to wrap my arms around his body and hold him tight so he can’t see me cry.  I want to run out of the room with him and take him far away from the world of care homes and dementia”.

This poignant incident will resonate with anyone who’s had to place a loved one in care.  When my mother was dying of dementia, I witnessed the incredible power of music to connect (and wrote about it here) and am now passionate about spreading the message.  I’m still pursuing my campaign to persuade the BBC to bring back their old radio programme Singing Together, originally aimed at children, this time for older people and those with dementia (see here).

When James’ worsening condition forces her, with reluctance and guilt, to place him in a care home she meets a man who knows just what she’s going through because he is too.  It is the broadcaster John Suchet, whose wife Bonnie has Alzheimer’s, and their shared experience brings them together in “the strangest dance of love and care” which ultimately, following James’ and Bonnie’s deaths, leads to John and Nula marrying.

Nula Suchet

Love, then, squares up to dementia.  It can’t prevent James or Bonnie from suffering or dying, but neither can it be destroyed.  Nula lays bare the devastating impact of James’ Pick’s disease (a rare form of dementia affecting behaviour, emotional control and ability to communicate) not just on him, but on her.

The resulting book is one of coruscating honesty that is well worth a read – but not, I would counsel, if you or a loved one are in the throes of what its author describes as “soul-destroying and utterly frightening years”.  Wait until your personal encounter with the UK’s most feared condition is over.

Occasional moments of magic temporarily ease the pain.  The house is suffused with the scent of sweet peas that James has grown and placed in every room, and when Nula goes to her car she finds little bunches of the flowers on the driver’s seat and dashboard.  “It’s his only way of telling me he loves me,” she says, and you hear her heart breaking.

It is in the care home that Nula meets first Bonnie, with her “strange and ethereal beauty” and then her husband John Suchet, to whom she feels “an instant connection.”  As their friendship develops into something more it is inevitably hard for them both.  Nula is a wife visiting a husband she adores but to whom she hasn’t been able to connect for years; she’s also establishing a relationship with another man.

John Suchet, incidentally, is as convinced of the power of music to enhance the lives of those with dementia as I am.

“Music is medicine to those with dementia, able to bring comfort and joy when nothing else can,” he told me.  “Bonnie smiled and tapped her feet along to Abba when words no longer held any meaning”.

The book never leaves you in any doubt about Nula’s love for James, or John’s for Bonnie.  And towards the end, battered by their experiences, their spouses’ suffering finally over, their burgeoning love almost destroyed by the bastard dementia, Nula and John come together and find peace.

When John Suchet’s book on Mozart is published he dedicates it to the memory of “Mozart lover James Black”.   While Nula ends her work with words of hope. After a decade of flat hopelessness, her creative energy rises again like sap.

“I’ve changed as a person.  The loss of James has made me see life in a different way.  I’m a bigger, better person because of it.  My life now, once again, is about love”.

It is a life-affirming end to an immensely sad and painful story.

The Longest Farewell, published by Seren Books, is available from www.serenbooks.com & Amazon

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Thanks For The Music – why dementia is a team game

An envelope arrived in the post the other day from Southampton university.  In it was a map – a Map of the Tracks.  Intrigued, I unfolded the purple and pink paper to be met by names and places that swept me back to my uni days.

There they all were: Swaythling, Burgess Road (it had a good bakery that sold a mean iced bun), Bitterne Park, The Avenue.  I had a sudden, painful recollection of cycling up Portswood Road, battling against icy winds to get to my Monday morning lecture on Paradise Lost.

More enticing were the questions posed beside these evocative locations.  “What memories do you have?  Do you think of a particular time and place? Is it the union back in the ‘60s?”  Er, not quite – I was still in short socks then.

But imagine my delight at seeing these words: “What about the music of the time?  We want to know which track takes you back every time you hear it”.

Excellent!  And easy too.  Joni Mitchell’s Big Yellow Taxi skids to a halt and I’m in my dingy little room in Montefiore Hall – a large, rundown place in which a handful of other girls and I occupied the only female floor.

Needless to say, I soon found myself a boyfriend.  Jon played Pink Floyd’s Another Brick in the Wall on a non-stop loop as he made endless cheese toasties in a special machine, the likes of which you never see now.  Ian Drury and the Blockheads played at the Gaumont.  I saved up to see them: Ian – and his rhythm stick – were fab-u-lous.

How quickly music summons up your past, as all of us involved in the dementia sector know only too well.

Another Ian – Big Ian Donaghy, care trainer, musician, author, speaker – popped up on my Twitter feed last week asking similar questions to my old alma mater.  “What songs take you to a point in your life and break your heart?”

My answer was swift:

Once in Royal David’s City: mum & I listened to the Nine Lessons & Carols from King’s College on Xmas Eve, day before she died. She had v severe #dementia by then & mainly slept but when she heard it she opened her eyes. Can’t hear it without my heart crumpling”. 

Plenty of other tweeps joined in with their thoughts. 

The Big Man was seeking songs for a choir to sing at the Care Show in Birmingham, where he was a keynote speaker.  This wasn’t an official choir, a Singing for the Brain choir or a community choir, but one that Ian created by dashing around the conference asking anyone and everyone if they’d like to join in his session at ten past two.

Such is the forceful passion of the man that 200 people – care staff, managers, owners, influencers, singers and non-singers, the tuneful and the tone deaf – joined him and his guitar to belt out songs.  Ian’s mantra is “Dementia Is A Team Game” and he’s nothing if not inclusive.  It lies at the heart of all that he does.

Big Ian knows only too well the power of music to connect to those with even severe dementia.   When his mother-in-law Liz died a few months ago aged 66 she’d been living with dementia for several years.  Ian says that right up till the end, when everything else had been taken from her, Liz was still singing.  She had created a playlist with 200 songs, including John Denver’s Annie’s Song and Leaving on a Jet Plane (two of my favourites), which all her carers knew.

At 49, Liz chose all the music for her funeral.  This was very important: the family were able to respect her wishes because they knew what they were – so often loved ones are left guessing.   Whenever a song Liz liked came on the radio, she would say she wanted it at her funeral.  “I used to joke that her funeral would be like Live Aid with a box!” Ian tells me.

In the last year or so Big Ian has made several short, punchy films highlighting his love for music and his passion for bringing it to those with dementia.  One of the most moving involves yet another Ian.  In his mid 60s, he has progressive supranuclear palsy which means he can no longer communicate verbally.

Big Ian visited him at Landermeads care home in Nottingham and, hearing that his namesake used to enjoy Paul Young, decided to play his guitar and coax him to sing a duet.

“It was astonishing,” says Big Ian.  “He had the room in tears.  By the end he was leading the song – there were parts where he came in before me and then, at the end, when he sang ‘Every time you go away, you take a little part of me,’ he tugged at his shirt and motioned at me”.  I’ve watched it and warn you now: you may need a hanky.

Big Ian is right.  Dementia is a team game.  If we all join in it makes a difficult situation better.  At the beginning of the year I wrote a blog about togetherness which struck a cord with readers.  Musing on the way we humans invariably think in terms of “them and us” rather than “we” – those living with dementia versus us or those who are old versus us – I concluded that this division helped breed stigma.

Before my mum was diagnosed with dementia I knew very little about it – I metaphorically crossed the road to avoid it.  Once she developed the condition, my view of it altered irrevocably and very much for the better.

I wrote in my blog:

“She was my mum.  So, she happened to have dementia.  She was still my mum, with her big heart, her eccentric ways and her numerous faults.  At a stroke my attitude changed and any notion of dementia existing somewhere else, over there, in other people’s lives, evaporated.  We are all in this together”.

My words echo Big Ian’s philosophy.   The man’s a musician.  He’s also a showman with a massive heart.  He knows the power of music to break down barriers and connect – hence his impromptu choir.

As he tells me, “If we all join in no one feels uncomfortable.   If we’re all ridiculous, no one’s ridiculous.  It’s like if you and three mates start dancing, then it’s alright because somebody has broken the seal”.

Immediately I’m transported to the uni bar.  It’s a Friday night circa 1981 and I’m grooving round my rucksack of books to Kim Carnes’ Bette Davis Eyes.  Of course I am.   So is everybody else.  Aren’t they?  If they’re not, they should be.

My graduation from Southampton University in 1982, with mum & dad

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Only Connect

I’ve always had a soft spot for John Humphrys, who retired from R4’s Today programme this week after 32 years in the role.  Perhaps it’s because he’s a Welshman and I undertook my postgraduate journalistic training in Cardiff or it could be that, like him or not, he’s undoubtedly a persistent and skilled interviewer.  As many of those paying tribute to him said, in canine terms he’s more of a terrier than the Rottweiller label he’s so often given.

But I think what’s really endeared him to me in these last few years is to hear the hard man of the airwaves reveal sensitivity when interviewing people with dementia and their loved ones.  It’s always more moving when someone you don’t expect to have a soft side, shows it publicly.  Mr Humphrys did so at the end of his final Today programme, his voice cracking as he gave his thanks to the great British public for putting up with him for so long.  It was as unusual as it was moving to hear the great man struggling for words.

Earlier in the programme, the BBC’s director general Tony Hall also mentioned this unexpected, sensitive aspect of his colleague.  The DG wondered aloud if it was down to the haunting impact on Humphrys of the 1966 Aberfan disaster in which 116 children and 28 adults were killed when a colliery waste tip slid down the mountain side onto the village school.  It must have done: the young Humphrys was the first reporter on the scene and he’s subsequently said that throughout his decades of covering wars and disasters all over the world, Aberfan remains the worst.

Pam Schweitzer, founder of the European Reminiscence Network, in action at a Remembering Yesterday, Caring Today event

Of course the ups and downs of our lives make us who we are and shape our responses to different events.  We in the dementia sector are only too aware of this, hence our respect for the power of reminiscence work and music that has had a special place in someone’s life.

Listening to Lord Hall’s words about the retiring interviewer (I’ve just realised the wonderful irony in that phrase), I was reminded of an interview that Humphrys conducted with Denise Stevens, a woman caring for her husband with dementia.

The interview was unusual from the start.  Humphrys began by reflecting on his own father’s dementia and the way, towards the end, he had “turned his face to the wall” and died.  This personal note set the tone for a radio item that had the feel of a conversation between two people with a shared experience, on which we listeners were eavesdropping.

Throughout the piece Humphrys displayed nuanced understanding of the complexities of Denise’s life as someone caring for a loved one with dementia.  He said that of all the voices he’d heard on the subject hers was the most compelling, and that her experience gave her a moral authority.  The interview was five years ago; it moved me to such an extent that I blogged about it here https://pippakelly.co.uk/2014/09/the-unending-grief-of-the-dementia-carer/.

When dementia touches you personally it changes your attitude towards it.  I mentioned this in my essay on stigma in the latest Alzheimer’s Disease International report, launched yesterday (see p95 of the report).

Questioning whether the media’s role is a help or a hindrance when it comes to diminishing stigma, I argued that the dementia community and the press could benefit each other.  I said it was up to those in the dementia sector to provide the media with strong, human interest stories to inform the general public about the condition and thus help to diminish stigma (which springs from a toxic combination of silence, ignorance and fear).

“Once a condition such as dementia is given a human face, your attitude towards it changes.  Gone is the stigma and fear: mum may be behaving in an unusual way, she may be incontinent or unable to speak properly, but she’s my mum.”  I went on to explain that this phenomenon accounted for the power of celebrities in combatting stigma.  The public think, bizarrely, that they know them.

Which is just one of the reasons why John Humphrys’ interview with Denise Stevens, conducted as it was in front of 7 million listeners, was so important.

Earlier this week I spoke about the power of compelling human stories to bring about change at a health and care leadership event.  Anyone who knows me will be all too familiar with my love of stories (or rambling on, as some might put it).  Preparing for my talk, I thought about why the telling and retelling of human experiences resonates so much with other people and how we might most effectively use this connection to help deliver positive changes, whether in the health and care sectors, the dementia community, or broader society more generally.

We humans connect to each other through our emotions.  As I said to health and care leaders at Frimley leadership and improvement academy, the most common reaction to the talks I give about caring for my parents is, quite simply, thank you.  (My mum had dementia, my dad had a series of strokes that left him bedridden, immobile and being fed by a tube in his stomach).  I think I articulate, and reflect back to them, my audiences’ and readers’ own attitudes and responses to the difficult times they are, or have been, going through.

It’s my skills as a journalist, a communicator, that allow me to do this.   And in so doing I hope to bring about small changes in the way we all think about those with dementia and older people, and how we care for them as a society.

In my early blogs I often used to muse about “joining the dots” – by which I meant discovering people’s stories, making connections and writing them up.  This week, for me, has been all about links: from the BBC’s retiring, irascible, yet sensitive inquisitor and his deep, somewhat surprising empathy for Denise Stevens, to the audiences and readers who express gratitude to me simply because I’ve told them openly, truthfully (and hopefully fluently) about what my family and I went through.

We humans are a sociable, tribal breed.  We love sharing stories.  We love to connect.  All I do is to tap into this natural human desire and then ramble on about it.

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