Pippa Kelly …

Amidst the worry and fear of the COVID-19 outbreak something wonderful is happening.  We’re Singing Together.

When Gareth Malone’s Great British Home Chorus launched online this week – 15,000 of us from around the globe joined in live and a whopping 86,000 watched the show afterwards.

Musician James Sills beat Gareth to it when he introduced the Sofa Singers last Friday as a response to self-isolation. Within ten minutes all 500 places on his online weekly sessions were taken.   His mission: to bring people together from around the world to “spark joy and human connection”.

You only need look at this BBC news clip on YouTube to see the joy sofa singing brings to so many people feeling discombobulated, isolated and frightened by the new situation in which they suddenly find themselves.  “I beamed from ear to ear,” says one sofa singer. “It  was a thing of beauty – it really was heart opening”, adds another. 

This is all brilliant.  But let’s not forget that there are people for whom discombobulation and isolation are often the norm: those with dementia and their family carers.  For whom singing could enhance their quality of life.

Yet the sad fact is that a significant percentage of care homes – 70pc of whose residents have dementia – don’t have the WiFi needed to log on to these virtual choirs.

Last summer a survey by carehome.co.uk revealed that 16pc of staff don’t even know if their care home has WiFi.  Of those homes that do, the service is mixed, with 18pc saying WiFi is only available in communal areas and 45pc saying access is available in both bedrooms and communal areas.  Even if older people living in their own homes have WiFi access , many of them cannot use it or find it confusing or frightening.

Which is why two years ago I campaigned for the BBC to reintroduce its weekly children’s radio programme Singing Together, this time for older people and those with dementia.   The operative word in that last sentence is “radio”.  No WiFi needed, just a good old-fashioned wireless.

The original Singing Together programme was introduced in September 1939 – long before the internet even existed – to bring together schoolchildren evacuated at the outbreak of war.  It ran on the BBC until 1999 – I remember it from my schooldays in the ’70s.

Every Monday at 11am my classmates and I would follow the lead of its presenter William Appleby to sing One Man Went To Mow and Linden Lea, aware that all over the country children just like us were singing the same song at the same time.   I’m pretty much tone deaf but the very act of singing together still gave me a lovely warm glow.

The idea for the corporation to reintroduce the programme wasn’t mine but that of internationally renowned soprano Lesley Garrett .  Miss Garrett made her suggestion at the launch of a report by the Commission on Dementia and Music that proved, beyond doubt, that listening and singing songs enhances the mood, speech, behavioural and psychological symptoms of those with dementia.  The report also revealed, shockingly, that good quality music therapies are available in only five per cent of care homes.

Despite the brilliance of Miss Garrett’s idea, I am afraid it fell on deaf ears.  My letter to the BBC’s Director General signed by key figures in the dementia sector, elicited a polite no.  Lord Hall cited dementia initiatives (such as its free sonic archive of over 16,000 nostalgic clips) to which the corporation is already committed.

But these downloadable noises are nothing compared to the life-enriching benefits that a regular weekly sing-song to the radio would offer those with dementia and their hard-pressed families and carers – as I said in an article I wrote for the Daily Telegraph.

My point was well made – by the BBC itself – when last year it aired Our Dementia Choir, a two-part documentary hosted by Line of Duty’s Vicky McClure demonstrating how singing literally changes lives.  The wife of 67-year-old Chris, who has frontal temporal dementia, said,

“What you’ve given Chris is unbelievable”.

The Coronavirus crisis has brought out the best in the BBC at a time when its funding, structure and national role are under threat.  It is fulfilling its public service remit and coming into its own.

The health and well-being benefits, the popularity and sheer joy to be found in coming together and singing together, particularly in adversity, are there for all to see in Gareth Malone’s Home Chorus – or the Home Malone choir, as he (and I) prefer to call it – and James Sills’ Sofa Singers.

“Join us!” declares the Sofa Singers’ home page.

“Because life is better when we’re singing together”.

For no one is this more true than older, isolated people, those with dementia and their families – many of whom don’t have access to the internet.  The genius of Miss Garrett’s idea lies in its inclusivity and simplicity.  Forget URLs, service providers, superfast fibre (I prefer Bran Flakes), portals and networks – and simply press a button on your radio.  Grandpa in Nottingham can tune in at the same time as his daughter and her family in deepest Devon – to listen and sing.   

There has never been a better time for the nation’s favourite Auntie to ensure her place in our hearts, help to secure her future and brighten all our lives by reintroducing Singing Together.  On the radio.

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An elderly man appears on a hospital’s A & E list one Friday night.   Michael Richardson’s pacemaker has literally exploded out of his chest and he is now cradling it gingerly in his hands, “slithering in blood and pus”.

Dr Rachel Clarke’s first instinct is to shove the thing back inside.  Her second thought is why on earth didn’t this man, who is in his late 80s, seek help earlier instead of waiting until his infection had spread, festered and finally blown up.  The answer, as she so eloquently describes in her book Dear Life, is that “something meant more to Michael than his own heart – that of his wife of fifty years”.  For Mary, it seems, has dementia and Michael is her sole carer.  If he went into hospital, who would care for Mary?

Busy as she is, Dr Clarke sits beside the distraught Michael, listens to his story and coaxes him to tell her about when he first met the vivacious young woman who loved dancing and whisky.  Despite Rachel’s efforts to comfort him nothing can take away Michael’s pain at the thought of his wife being whisked away by social services to an emergency care home where she will almost certainly have to remain, confused and frightened.

For Rachel, however, one incontrovertible fact stands out amidst this pain: today she’s met a man who so loves his wife that he’s prepared to sacrifice his heart for her.

“In the end, when death bears down, there is always this, the love of others.  Greater than nowness, greater than nature, greater than moments of sensory pleasure: the power of human connection”.

A specialist in palliative medicine, Dr Clarke delivers profound messages through simple stories.  Her book opens with dramatist Dennis Potter’s famous description, during a 1994 television interview, of the “whitest, frothiest, blossomest blossom that there ever could be.”  Two months later Potter was dead.  But, as Clarke says, his extraordinary interview with Melvyn Bragg filled viewers’ minds with the sheer theatricality not of dying but of living.

“Death’s imminence, its claim on his future, had given Potter licence to live like a child in the present.  Every second sang”.

Every page of Clarke’s book swoops and soars with humanity.  It is at once a gloriously worked text in the field of palliative medicine and dying, and a love letter to life – embossed, imbued, infused with care.

In it, Clarke reveals her sensitivity and her innate understanding of the healing potential of things other than medical skill.  But, as a doctor , she also knows how quickly her profession can become inured to, detached from, the people they seek to heal – even as they fight to preserve their instinct for kindness.

“I saw doctors and nurses who had barricaded themselves away from the human beings they tended, becoming hardened and withdrawn, simply to survive”.

Yet amidst all this love and loss, Dr Clarke herself never loses compassion.

“Above all, when your focus is people, not body parts, taking time to listen to your patients’ words – seeking truly to understand what matters to them – can have astonishing potency”.

It is all so obvious, really. The title of my very first blog was “People not body parts”, a phrase borrowed from the then Health Secretary Jeremy Hunt.  It was 2014 and Mr Hunt was announcing changes to ensure that an NHS patient was seen as “a person with a name and a family” rather than “a part of the body where things have gone wrong”.  Incredible really that such an announcement was needed.  And have his words been heeded?   I wonder.

Two years later, in 2016, I gave a speech at the NHS Confederation entitled “At the heart of all care is the person”.  I apologised for making what might seem to be a statement of the bleeding obvious, explaining that in the case of my father’s treatment by the NHS, the obvious – the person at the heart of the care – had all too often been forgotten as protocols and systems took centre stage.

Kate Granger, painted by Antonia Rolls for the A Graceful Death exhibition.

Like Dr Clarke, the late, great Kate Granger was a doctor (a consultant in geriatric medicine) who understood the power of small acts of kindness – of human connection.  The knowledge underpinned her “Hello my name is” campaign, encouraging and reminding all healthcare professionals to introduce themselves to their patients.

Dr Granger’s inspiration came when she developed cancer and found herself on the receiving end of NHS care.  During one emergency hospital admission she lay on a trolley in severe pain as various medical professionals approached her.  Not one of them introduced themselves or interacted with her; she said she felt like one of the mannequin arms on which trainee doctors practice their skills.

It was only when Kate met Brian, a porter, that her faith was somewhat restored – he introduced himself and was the first to recognise her pain, wheeling her trolley with extra care.  During the three weeks that Kate remained in hospital, the majority of healthcare professionals failed to introduce themselves.

Behind the simple message of “Hello, my name is” lies a profound truth: that patients are people, that through the small act of sharing names you can bring about a powerful mind change.

Dr Granger knew that scientific medical skill, as all of us involved with dementia know only too well, is only part of the healing, caring process.  Dr Clarke also understands this.  As she writes,

“The spoken word, I had come to realise, could be as delicate and important as any physical intervention, and sometimes equally life-changing”.

These two inspirational doctors remind us all of the importance of kindness, the power of communication, and the absolute necessity of human connection, without which we are – to paraphrase a former Health Secretary, reduced to body parts not people.

Dear Life, published by Little, Brown, is available at book shops and Amazon. 

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!

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