Have you heard the joke about Dementia?

Is dementia ever funny? The stand-up comedian Steve Day has taken his show – Adventures in Dementia – to the Edinburgh Fringe. When I lead Dementia Friends awareness sessions, I ask at the start for a series of words which come to mind when I say the world dementia. Laughter rarely features. Sadness – a deep, gnawing sadness – yes. Frustration, anger, confusion, fear…but humour?

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I’ve just spent a couple of days at the Fringe and I didn’t want to miss Steve’s show. I was intrigued. It isn’t a laugh-a-minute by any means and a slideshow of photos, which ends with the last one he took of his father shortly before he died in hospital, ensures the reality of dementia is never far away. But the jokes, such as they are, come from a place of love and the underlying message of cherishing those closest to us makes the show a positive one.

Thinking back, my dementia scrapbook of memories with Mum is filled with smiles . Mum laughingand laughter. Like the time I made a gentle joke at her expense and she told me I was “a little chuffer.” (What was she going to say?)

Or the game with a balloon – batting it backwards and forwards like we had more than 40 years before – when the roles were reversed. Or the times I couldn’t help but smile when she pointed at a picture of herself and said: “That’s you.” Or the songs, always the songs, which gave both of us so much pleasure. Magic Moments indeed.

Of course, there were sad times too. Times when a little temporary clarity brought a tear and an apology – “I’m ever so sorry, I don’t know what to do.” “It wasn’t supposed to be like this.” In truth, neither of us knew what to do but as a family, we survived on love. And it isn’t those sadder moments which burn brightest today. It is the smiles, it is the singing, it is the laughter.

I left Steve’s show with a smile. He’s trying to get Arts Council funding to take his show on the road. (Given the current debate about the funding of dementia care, there’s a certain irony that the show in Edinburgh is free and the only income is from donations at the door). Adventures In Dementia tells people that amongst the tears and the sometimes overwhelming pain, there’s often a love story to be told as well. It’s a story which is lived daily by thousands and thousands and thousands of carers up and down the country. It deserves to be told.

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Saying Goodbye – The Untold

I’ve just listened to a very moving piece of radio which I wanted to share with you. Recently, I came across The Untold on BBC Radio 4 for the first time. It’s essentially a series of personal stories, told over a period of time. Real stories – the lives of “ordinary” people placed in extraordinary situations – are often fascinating and this episode of The Untold fitted that bill.

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The two protagonists are Hayley, a young woman with a serious love of all things Disney and Kevin, her father. While Hayley was working in the United States, Kevin was diagnosed with Pick’s Disease, a form of dementia, aggressive in Kevin’s case. She came home but found it very hard to relate to the changes in Kevin:

“I was so close to my dad. He was one of my best friends…. . How have I come to dislike this person?”

While every person with dementia is unique and every experience different, that sense of struggling to get to know someone you have known all your life, and of mourning the living is a common one. I felt that that I mourned Mum for nine years after her diagnosis and then, when she died, I started mourning all over again. The mourning is different – the gnawing sadness the same.

Hayley has to make the difficult decision of whether to return to her dream job in the United States and in doing so, probably say goodbye to Kevin for the last time. I won’t say any more because the programme is available on BBC Sounds (I’m sounding dangerously like an in-house promotion there) but it’s worth a listen.

Life has to go on but for those for whom a loved one is living with dementia, that going on can be wracked with guilt. Hayley’s story is unique but it’s also universal.

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Over the Moon, Richie

Two events this week would have thrilled and fascinated Mum. As I watched England’s  improbable Cricket World Cup Final victory at Lords on Sunday – super over and all – my mind went back to the first final in 1975 at the same ground. It was on my 11th birthday and I watched the game all day long, not missing a ball…until the last ten overs. Mum had invited the family for a celebratory tea and that meant we had to sit at the table in the dining room. No radio was allowed so I was forced to miss the closing overs of the West Indies’ win. I’m just about over it now. It was my day, after all!

20 years ago, the World Cup took place in England for the fourth and final time until this year’s competition. I bought tickets for Mum and I to a group game between South Africa and Pakistan at Trent Bridge. This was ten years before Mum’s diagnosis and some time before any signs of what was happening to her began to show. We set off early for the game to make sure we didn’t miss a ball, armed with copious supplies of food. Mum seemed to think she had to cater for both teams as well as the two of us. For Mum, the lunch and tea we took with us seemed every bit as important as the game itself. As is my way, I had eaten most of my share before the shine had worn off the new ball.

South Africa won a close, pulsating game thanks, in no small part, to some ferocious late order hitting from Lance Klusener.

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They Think It’s All Over? It’s Hardly Started. Sport and Dementia

My enduring love of sport comes from Mum. In fact, as I’ve spent the majority of my working life as a sports journalist, I suppose you could say that I owe her my career too.

Like me, Mum was an enthusiastic spectator but a strictly limited player. Dad was less sporting, either as  spectator or player, though he was international class at the little-heralded pastime of Pro-Celebrity Sporting Snoozing. Put a sporting “celebrity” on television and Dad was asleep in seconds.

Mum was a one-time season ticket holder at West Bromwich Albion – my lifelong addiction to all things Throstle comes from her side of the family. In later years, she was strictly an armchair fan but she’d talk fondly of some of the best players she’d watched – Ronnie Allen, Ray Barlow, George “Ada” Lee and, later on, Jeff Astle.

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Jeff, of course, died tragically young of Chronic Traumatic Encephalopathy, a degenerative brain disease similar to dementia. Since his death, his family have struggled to obtain answers to questions about the links between football and CTE. Was his repeated heading of the ball, a “skill” for which he was celebrated, a significant factor in his early death?

There’s growing evidence of links between sport, and football in particular, and dementia. And there’s a growing feeling that these sports should be doing more to look after former players who have given so much pleasure. Players like Ernie Moss.

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Ernie played most of his professional football away from the brightest spotlight but he was a master goalscorer and it was players like Ernie, just as much as Jeff Astle, who made me fall in love with football. Having watched him play for Chesterfield in the 1970s, I could hardly believe it when I saw him turn out for Kettering Town at Maidstone United in the late 80s. Ernie now lives with Pick’s Disease, a rarer form of dementia.

Given the eye-watering amounts of money in some areas of football today, the sport surely has a duty to do as much as it can and more for former players like Ernie. And, I’d venture, it has a duty to the families of players no longer with us, like Jeff.

But sport has another role to play. Like music, our relationship with teams and players is predominantly an emotional response. (As West Brom were relegated at the end of the season in which I went to my first game, and have gone down at least six times since, I don’t think there’s much rational about my support.) As Tony Jameson-Allen and his award-winning Sporting Memories Network charity has proved, sport can reach the parts of a life affected by dementia that simple conversation no longer can.

A few years ago, I watched a game in the company of a man living with advancing dementia. At lunch before the game, he was silent, disengaged. Once we took our seats pitch-side, his eyes brightened, his attention sharpened.  Years before, he’d been a turnstile operator at the ground. Even now, I’m not sure he knew his own name, but he knew exactly where he was.

In the early days after Mum’s diagnosis, we watched England’s test series with the West Indies together on television. As her Alzheimer’s tightened its grip, she still liked to talk about cricket, even if it seemed as if, for her, Ian Bell of her beloved Warwickshire opened both the batting and the bowling for England. No matter, sport gave us some common ground.

Sport can’t provide a cure for dementia but it can bring comfort and warmth.

We owe sport a lot but sport owes those closest to Jeff Astle, Ernie Moss and many, many others a great deal too.

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Jenga and Mike Oldfield

I played Jenga today today for the first time in a very long while. It was part of a very enjoyable morning spent at the Leominster Meeting Centre.

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It was a long overdue visit. The concept of a meeting centre – a place where people can adjust to a diagnosis of dementia, receiving support, advice and, most of all, friendship, originated in the Netherlands but more and more are springing up around this country. It’s the fruit of a lottery-funded project being run the University of Worcester’s Association for Dementia Studies.

It was wonderful to spend time in such a supportive, non-judgmental environment. Someone said to me, ahead of my visit, that I would struggle to identify who was living with dementia and who was a carer. She was right but actually that really doesn’t matter. The centre offers equal support to both. The only labels on show are name badges. No-one is defined by an illness or by a role. Staff, volunteers, visitors – everyone mucks in.

When Mum was first diagnosed, more than ten years ago, my sister took her to a day centre. It was Mum’s one and only visit:

“It’s full of old people. I don’t want to go back.”

I can’t help but think that Mum would have loved a day at a Meeting Centre. And she would have willingly joined in with the game of Jenga which proved to be the centrepiece of the morning.

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It was full of laughs but also fairly serious. As a visitor, I was keen not to make a fool of myself and I was relieved to have avoided the ignominy of sending the pile crashing to the floor.

Oh, and what has Mike Oldfield to do with this? Well, one of the characters I met today had played on one of the most celebrated albums of the 1970s. Dementia continues to broaden my world.

 

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Thank you for the Music

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I’ve written before about how music, like a popular Dutch beverage, reaches the parts other things can’t. Today, I spent a lovely morning at an Alzheimer’s Society Singing for the Brain session in Coventry, hosted by Dave Willetts, swapping the West End and shows like Les Miserables and Phantom of the Opera for a Tennessee Waltz in a church hall in his home city. I can’t imagine an audience at Her Majesty’s Theatre could have derived any greater pleasure than the hundred or so people living with dementia and their carers who joined him today. I was secretly pleased with my performance – fewer bum notes than normal – although I opted not to take part in The Lambeth Walk for fear of inadvertently kicking some innocent reveller.

Many of us have an emotional connection with our favourite songs. They’re like best friends. Glancing around the room today, I saw men and women who had previously said little or nothing singing heartily. Like Mum and her Magic Moments, they might not even have known the names of those closest to them but the words to their chosen tunes came naturally. The Line of Duty star Vicky McClure has explored the links between music and dementia in her BBC documentary My Dementia Choir, an emotional experience for her and her viewers. Today, as we sang You Raise Me Up to bring the session towards its close, I felt a lump in my throat. I don’t particularly like the song but the sight and sound of a room singing with such gusto was enough.

Music does that to me. I hope it does to you too!

Dave Willetts has set up a Foundation to support his work to help people with dementia. He’s recorded a selection of songs inspired by his Singing for the Brain experience. More details from http://www.davewilletts.com

 

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International Women’s Day

It’s International Women’s Day and over the course of the last few hours, I’ve heard several people – mostly women, it has to be said – talking about women who have inspired them. It prompted me to think who I might choose. There are writers, actors, musicians, even the odd politician whom I admire and respect.

Closer to home, my wife and sister inspire me. Their quiet, and sometimes not so quiet determination, has had and continues to have a huge impact on my life. And, of course, there’s Mum. Mum’s quiet determination to live the best life she could when dementia came calling is typical of so many women I’ve met, both living with dementia and caring.

But Mum was so much more than her dementia. The words of two of the best English songwriters come to mind:

“She gave to me her tenderness, her friendship and her love….. Her life was love and happiness and in her steps I trace, the way to live a better life… .” i

The greatest example, the greatest inspiration can sometimes come from the quietest, most unassuming place. So, yes, let’s celebrate the women who’ve broken through glass ceilings, who’ve left an indelible mark on the world around them. But let’s celebrate – too – those women whose impact lies closer to home.

 

 

i). c. Chris Difford, Glenn Tillbrook. Some Fantastic Place  1993

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