Thank you Barbara

Barbara Windsor in 2010, Wikimedia Commons

A few years ago as I wandered along a London street looking for a parking ticket machine, I saw an immaculately dressed, petite blonde I recognised.   “Hi,” I said.  “Hello,” she replied, giving me her trademark beaming smile.  It was only then that I realised the woman was Barbara Windsor – familiar, yes, but not known to me at all.  She could have ignored me (goodness knows how often this must have happened to her), but instead she graciously, kindly, considerately, put me at my ease.  Now it’s our turn to do this for her.

For the 80-year-old actress, famous for countless Carry On films and, latterly, EastEnders, has Alzheimer’s disease.   Four years after she was diagnosed and as her symptoms become more pronounced, her husband Scott Mitchell has decided to let the world know so that if, when she’s out and about, Barbara acts uncharacteristically, people will know why and “accept it for what it is”.

This is so, so important.  When entertainment royalty such as Dame Barbara Windsor go public about their dementia it makes headlines, generates discussion, raises awareness of a condition which, despite being the biggest killer of women in the UK, despite afflicting 850,000 people and despite costing the country £23bn a year, is still much misunderstood and shrouded in stigma.

In less than 48 hours Scott Mitchell’s announcement has projected the topic into everyone’s lives.  All the national newspapers carried the story, many with double-page spreads.  Yesterday evening Radio 4’s PM programme ran a lengthy interview with Formula 1 racing legend Sir Jackie Stewart, whose wife Helen has frontotemporal dementia.

He spoke informatively, fluently, personally and courageously about what Helen’s illness has meant for them in ways that will resonate with thousands of families up and down the country.  He described how, because of the wealth he’s accrued, he can afford specialist nurses for his wife whereas others, less affluent, less fortunate, cannot. Staggered to discover that there is no cure, Sir Jackie has launched a charity, Race Against Dementia, to fund research into the condition.

On the BBC Breakfast television show a panel including author Wendy Mitchell, who lives with Alzheimer’s, discussed Barbara Windsor’s diagnosis.  In just a few minutes several key points were beamed into households the length and breadth of the land.  The main, crucial, message being that with more knowledge of the condition, the public could better appreciate how it affects those who have it and show them more tolerance, more patience, more understanding.

Presenters Charlie Stayt and Naga Munchetty were well-informed about dementia and its broad-reaching impact on, not just the individual involved, but his or her family – no doubt aided by their previous encounter with Wendy Mitchell, who appeared on the show earlier this year talking about her book, Somebody I Used To Know.  They knew the right questions to ask – and they had the right people providing the answers.

Wendy Mitchell with her daughters Gemma & Sarah

I don’t know if she’s fully aware of it, but Wendy Mitchell is a journalist’s dream.  She speaks in near perfect (and unusually sensible) soundbites.  I say this – I hasten to add – in a spirit of awe and appreciation.  It is one of those things that seems so easy yet is very, very hard to achieve, particularly on live television in front of 1.5m viewers.

“Dementia is like a cruel game,” she said.  “Some days it throws a curved ball at you but because I’m such an optimistic person  I say that tomorrow might be better.  If you dwell on the sadness of bad days, it is a day lost of happiness”.   A day lost of happiness.  Her inversion of the words merely adds to the power of the sentiment.

Wendy’s fellow panellist Simon McDermott sprang to the nation’s attention two years ago when he uploaded YouTube videos of his father Ted (who has Alzheimer’s) singing in the car.  The films soon went viral and the Songaminute Man was born; Simon’s Just Giving page has to date raised over £130,000 for the Alzheimer’s Society.

Picking up on Scott Mitchell’s desire to let others know about Barbara’s condition so that they can understand her behaviour, Simon spoke of strangers’ kindness, of how they became more considerate and mindful of his father’s behaviour once they understood the reason for it.

Kathryn Smith of the Alzheimer’s Society added that if people understand about dementia they can look out for each other so that communities become dementia friendly.  “A little bit of kindness doesn’t hurt anybody”.

“It’s being people friendly”, added Wendy, accurately, succinctly – before, just for good measure, charming us all with one of her most endearing smiles.

On Radio 5 Live’s Breakfast Show Charmaine Hardy, wife of 69-year-old George who was diagnosed with a rare form of dementia called Primary Progressive Aphasia a decade ago, spoke eloquently about how it had affected both their lives.  She stressed that George’s memory was still perfect, which may come as a surprise to anyone who thinks that dementia is all about forgetfulness.  But her husband cannot speak or understand what is said to him.  He has lost his sequencing and problem solving skills, so cannot clean his teeth, feed, wash or dress himself and were he to come across a gate, he wouldn’t know what to do.

George, she told listeners (2.2m tune into the Breakfast Show each week), had been a top scientist.  Now Charmaine cannot turn her back on him for a minute for fear of what might happen.  When presenter Nicky Campbell asked her how it was for her, she paused and we could hear her intake of breath.  “It’s not easy, but I do my best for him”.  How much emotion was contained in those few words.  And, importantly, how much knowledge of this rare, less spoken of dementia, did this thoughtful, caring woman impart to the rest of us.

In an echo of the devastating condition itself – whereby a single diagnosis has an overwhelming impact, on not just one individual but an entire family – when a celebrity and his or her loved ones decide to go public with a dementia diagnosis, the benefits ripple outwards, causing a cumulative, positive effect.

It is all part of the soft power of culture.  Slowly but surely as more and more of those in the spotlight choose to speak out – think of author Terry Pratchett, actress Prunella Scales (who, together with her husband Timothy West, has featured in seven television series about the couple’s canal boat trips following her diagnosis), Sir Jackie Stewart and his wife Helen – the public’s knowledge and awareness of dementia grows, silence gives way to understanding, fear subsides, stigma fades.

The famous have a platform and unrivalled power to use their well-trained voices.  But dementia – as anyone who has it or whose loved ones have it, knows only too well – is also very personal, involving complex, competing emotions.  It takes a brave spirit to talk out.

Fifty-five-year-old Scott Mitchell expressed this in the Times when he explained that, though his wife was aware that he was making her diagnosis public, Barbara may forget she gave him her blessing to do so.  In which case, he said, “I’ll just have to deal with that”.  Along with everything else – the frustration, grief, anger, bewilderment, exhaustion and guilt – which, you and I know only too well, he is going through right now.

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The Little China Clogs

Apprentices Clare and Hilary with Rio at the Remembering Yesterday, Caring Today reminiscence session

It’s not often that you get to travel the world on a Monday but recently I did just that, escaping to the sun of Barbados and the oriental delights of China via Brighton, Southend and Cuba (my geography was always appalling) then zooming back to my childhood via a pair of tiny blue and white china clogs (of which more later). 

I met Rio and her husband Tony driving to Turkey in their car.  They’d loaded it up with suitcases, stashed their chocolates in the front so they didn’t get squashed and then set off for Salzburg, Bulgaria and Istanbul, where they’d had to give a backhander to the police. 

It was quite an afternoon.  In fact, I was at a reminiscence session for people with dementia and their family carers in Belsize Park, London.  A mood of inclusivity, sensitivity, warmth and sheer good fun permeated the place, producing a world devoid of labels, of them (with dementia) and us (without), unencumbered by bureaucracy, titles or paperwork.  A world built on human connections.

Tony and Rio’s car was formed of four chairs.  The suitcases were empty props. The chocolates were imagined.  But we were there, with them.  Transported back in time to when the couple used to travel through Europe with a motor full of clothes to sell in markets and bazaars.  Rio, it turns out, sailed to America on the QE2 not once, but twice.  Tony didn’t go “because he couldn’t afford it”.  When the pair started singing New York, New York, at first Rio couldn’t remember the words but with a little coaxing from her man and encouraging smiles from friendly faces, she was soon belting out the lyrics.  It was wonderful to watch.  Reminiscence therapy – using that day’s theme of holidays and travel – at its very best. 

There were over 30 of us sharing memories, singing I Do Like To Be Beside The Seaside, acting out vignettes of our travels and our lives and – when the picnic was produced – enjoying ice-cream cones and homemade drizzle cake, as well as Chinese treats. 

When I introduced myself to 82-year-old Gloria she enveloped me in her arms.  This warm, expansive Barbadian developed dementia about seven years ago and has been living with her daughter Natasha in Kentish Town for the last six.   

The two of them have been coming to the weekly two-hour sessions for ten weeks and Natasha explained that it offers her mum friendship and social interaction while also stimulating her memories.  “It changes her mood – she is happy and jovial for a couple of hours afterwards and on the way home she is very talkative. She may not remember the session but she knows it gives her a good feeling”. 

It also, quite obviously, benefits 47-year-old Natasha, who gave up her job as a team leader in customer services to care for her mum.  “I do find it difficult and some days I cry my eyes out.  You feel isolated so coming here helps because you don’t feel like you are the only person in the world going through this.  The group gives mum and I laughter, the best medicine of all”. 

Angela used to come with her husband Kenneth before he died last September, just before his 80th birthday.   Having suffered a brain haemorrhage 15 years previously, he then slowly developed dementia.  The couple had been married for 57 years and Angela told me that attending the reminiscence project was wonderful because when they were at home so many things were geared towards Kenneth but the sessions were for them both, as a couple.  She left it for a few months after her husband died but then thought she’d like to have the experience “from the other side”, as a volunteer.  She’s found it cathartic and, like me, believes it’s all very cleverly done. 

The seeming spontaneity of the Remembering Yesterday, Caring Today afternoons belies the tremendous thought and expertise that goes into their preparation.  I arrived an hour before the afternoon kicked off, but already people were loading tables with shells, postcards, sun hats, (blue) passports and origami boats.  Three of them were volunteers, the rest were apprentices learning the reminiscence techniques developed by Pam Schweitzer, a woman whose contribution to the field of reminiscence and dementia earned her, in 2000, an MBE.

Initially a theatre director, she found herself drawn to reminiscence work and in 1983 founded the Age Exchange Theatre Trust, creating and directing 30 professional productions based on older people’s memories that toured nationally and internationally.  Four years later Pam opened the world’s first reminiscence centre in London, providing a focus for training, and in 1993, she founded the European Reminiscence Network with partners in 16 European countries. 

Pam Schweitzer in holiday mode

Talking to Pam, watching her as she leads the apprentices and volunteers in a warm-up session to loosen their joints and vocal chords before the attendees arrive, it is obvious she’s a born leader.  She knows how to project her voice, how to run a show, how to draw people out.

She also has a vision and a strategy, setting up the apprenticeship scheme six years  ago to ensure that the reminiscence project can advance without her (though hard to believe, she is now into her 70s).  The apprentices attend two-day training courses across Europe and beyond (there are schemes in Japan, Singapore, America and Canada).  Trainees attend 12 sessions and submit a 3,000 word essay to show what they have learnt before becoming accredited facilitators of the European Reminiscence Network.

The two day course costs £120, as does the 12 week apprenticeship scheme with debriefs and mentoring support.  The network has received £10,000 from the Big Lottery and smaller amounts from Camden Carers, Westminster Arts and the Greenwich Dementia Action Group.

Apprentice and horticultural therapist Rosie Hollands told me that week by week she sees people with dementia “opening out and relaxing”, adding that you never know what’s going to trigger a memory.

That’s certainly true.  On Gloria and Natasha’s table, among the postcards and shells was a memento I recognised immediately.  As soon as I saw it I was ten again, standing on my bed, reaching up to slide open the glass fronted cabinet and pull out a tiny pair of blue and white china clogs.  I’d not thought of them for over half a century. 

On a warm March afternoon in 2018 I cradled the miniature shoes in my palm, weighing the memories – of mum and dad, my much older sister with whom I’d once shared my room, our matching rose-sprigged eiderdowns – letting the smells and emotions wash over and through me, transporting me back to my childhood.  It was a magical, unexpected moment that brought home to me, quite literally, the power of reminiscence therapy.  I knew that if I ever reached the stage where I could no longer remember much of my past, or the significance of those little shoes, the sight and touch of them would forever evoke in me happiness, security and love. 

The next training and apprenticeship scheme starts on 14 May, and details can be found here.

Natasha and her mum Gloria, holding the little china clogs

  

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Old Fools

Mark Arends & Frances Grey give stunning performances in Tristan Bernays’ Old Fools at the Southwark Playhouse

Two people, a piano stool and Tristan Bernays’ script are all that constitute Old Fools, currently playing at the Southwark Playhouse, and there isn’t even a linear plot.  Yet somehow, in just 60 minutes, we’re taken into the world of Vivian and Tom, from their first flirtatious dance, through the trials of early careers to the ups and downs of parenthood and his short-lived affair, which nearly splits them apart.  It doesn’t, they make up, because at the end of the day, they love each other.  But then Tom develops dementia and there is, for Vivian, “nothing left for me to love”.

It is a brave, raw piece that makes the audience work.  And laugh and cry.  It is both tender and brutal.  It is, says Bernays, a relationship play in which one of the characters happens to have dementia.

He may not know it, but Bernays could have been speaking at an Alzheimer’s conference.  He’s seen and drawn the man, Tom – with his precarious, impecunious musician’s career, his dreams and loves (of his partner and their daughter) and his selfish, thoughtless flaws – not the condition.   He has portrayed, too, the wife, the translator, the lover-turned-carer-turned-who-knows-what whose sense of self and identity is as broken and lost as that of her partner.   “I can’t do this anymore Tom,” she tells the man who once had the power to make her melt and who now sits, curled in a care home, silent, head bent, gripping her hand until she cries out in pain.  “If I keep coming here there will be nothing of me left”.  This is dementia in all its destructive, ugly truth.

 

Mark Arends & Frances Grey in Old Fools

 

Incredibly, there are also moments of lightness and laughter, of witty banter between the two of them in their earlier days.  “I’ll call you.”  “Call me what?”  “Beautiful”.  Vivian is, of course, a linguist.   And it’s words, language eliding, slipping and sliding that guide us, the audience, through the choppy, time-travelling waters of this play.  There is nothing else – no costume changes, no scenery, just two extraordinary young actors in Mark Arends and Frances Grey, breathing life into Bernays’ lines.

After he betrays her, Vivian throws Tom out.  Devastated at what he’s done he pleads to come back home to be with Viv and their daughter.  Home, for Tom, is “you and me and us and Alice” – an often repeated refrain.  Home is wherever they are – this too has a poignancy for anyone whose life has been touched by dementia.  Those with the condition and their families often speak of “coming home” when they are with people they love in a safe, understanding environment.

The other constant echo, the soundtrack to the couple’s lives, is the song to which they are dancing when they first meet, and when we first meet them – Fred Astaire’s “The Way You Look Tonight”.   It is the song, the soul note, to which the pair of them keep coming back, to which Tom, even with his advanced dementia, will always connect.  Its lyrics, set to the familiar haunting tune, are almost unbearably pertinent in the context of Tom’s failing mind.  “Some day, when I’m awfully low, When the world is cold, I will feel a glow just thinking of you”.

But will he?  Will she?  How much of what they’ve accrued over a lifetime together, will remain?  At the heart of this intense, challenging play is what dementia does to a relationship.  What is left when memories go?

It ends with the two of them locked in an embrace.   They are still, just, dancing together to their song, but he’s forgotten the words.  The record may keep turning, but the next step for Tom – as his medical consultant tells him – is not as simple as that.  Each case of this most feared and misunderstood condition is unique and unpredictable.

Old Fools, produced in association with Alzheimer’s Research UK, reminds us all, not just how “really bloody hard” all relationships are (to quote Bernays), but of the painful human cost of dementia, a condition that has only relatively recently come to public attention despite being the biggest killer in the UK.

It is wonderful that producer and director Sharon Burrell, To The Moon and Making Productions believed in Bernays’ short, bitter-sweet play (he describes it as “heart-warming and heart-breaking and I’d go with that) – and impressive that Arends and Grey turn in such deft, nuanced performances in the most intimate, exposed, and unforgiving of arenas.

Plays such as Old Fools, Florian Zeller’s The Father, Matthew Seager’s In Other Words, Inspector Sands’ The Lounge, all of which I’ve reviewed, bring the thorny subject of dementia quite literally into the spotlight, centre stage.  They raise awareness of it, reduce the stigma surrounding it, inform the public about it in brilliant, shocking, creative ways.  And I applaud them all.

 

Old Fools plays until 7 April at Southwark Playhouse & you can book tickets here. 

 

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Somebody I Used To Know

Wendy Mitchell’s memoir, Somebody I Used To Know, gives us dementia from the inside out, from the first, fearful inklings that something is wrong to the nitty-gritty of daily life with a progressive disease that gradually forces her to give up those things (from her work to her running) that make her who she is.

As such it is one of the most honest, vivid accounts of living with this condition – in Wendy’s case, Alzheimer’s disease diagnosed when she was just 58 – that I’ve come across. It is also much more.  It’s a multi-layered book: reflective of Wendy’s no-nonsense character yet also offering profound insights into the resilience of the human spirit.

A single mum with two daughters (their dad left when they were seven and four), Wendy has always been independent, thrifty and organised.  She’s also been very busy, working for 20 years as a non-clinical team leader in the NHS and, ironically, renowned for her elephant-like memory.

This all changes when, out for one of her regular runs along the River Ouse, she falls, for no apparent reason.  In fact, she’s suspected that something’s been wrong for a while though she can’t quite put her finger on it.  And then she falls again.  And again.

It takes over three months, hospital stays, neurological tests and scans, two months off work before the D word is mentioned in a letter from her clinical psychologist.  “It is possible that this is a profile of the early stages of a dementing process”.

“But it can’t be that,” her (now adult) daughter Sarah says.  “You’re so fit and healthy.  It doesn’t seem fair”.

And of course, it isn’t. Wendy’s old life has veered off track, she’s on her way somewhere else – or, as she sees it and tells it, to becoming someone else.   “We wouldn’t get on now, you and I,” she tells her younger self.  “We like different things.  You love the hustle and bustle of a busy city, whereas some days I lose hours just looking out of a window at the view.  Just looking.  Just still”.

Wendy with her daughters Gemma & Sarah

It is through acknowledging the changes taking place in herself that 62-year-old Wendy realises that her dementia – hated as it is by her, as much for the havoc it will wreak on her daughters’ lives as on her own – has given her a rare perspective, focussing the mind “in a very special way”.   Yes, it is gradually stealing everything that made her who she once was.  Yet she is still Wendy.  Still determined.  Still strong.  She knows that dementia cannot take away the love she feels for her daughters (which permeates the book), or they for her.

Wendy may experience “a real, visceral grief at saying another goodbye, this time to baking”, anger and frustration at being abandoned post-diagnosis by an NHS for which she’s worked for two decades, and mortification when she forgets her daughter Sarah’s birthday for the first time in 34 years.   But she can, and does, start a daily blog to serve as her memory (which ultimately enables this memoir to be written), set reminders to ping on her Ipad, become a Dementia Friends Champion, campaign to raise awareness of the condition, promote and participate in research.  Her new life becomes as busy, in different ways, as that of the person she used to know, and be. Continue Reading →

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