Well I Know Now with Pippa Kelly

Full disclosure, today’s guest Wendy Mitchell is one of my all-time favourite people. She is positive, witty, resilient, genuine and wise. She is the author of Somebody I Used To Know, a ground-breaking memoir that was selected as Radio 4’s Book of the Week, chosen as one of the Times’ newspaper’s books of the year, and made it onto the Sunday Times best-seller list. She is also living with dementia.

Seven years ago at the age of 58 Wendy, a former NHS manager, was diagnosed with Alzheimer’s. In a classic stroke of down-to-earth genius, she started a daily blog to serve as her memory. It is called, cleverly, Which Me Am I Today, and it is insightful, compelling and beautifully illustrated with her own photographs.

She loathes her dementia for stealing away everything that once made her who she was and for the havoc it will wreak on her two adult daughters’ lives, but she also recognises that it has given her a rare perspective on the world. 

She has capitalised on this as a first-class dementia champion, her new life becoming as busy, in different ways, as the life she used to lead. Pre-pandemic Wendy was to be found travelling the country by rail, bringing her trademark humour and insights to primetime television and radio shows, conferences and colleges.

As with all the true greats, whatever their field, Wendy makes it seem easy. In truth, each cab and train journey involves meticulous preparation, military timing and countless Ipad reminders. And as she once discovered, she can never stop pushing herself on. To stop, to take time off, is to let Alzheimer’s win. 

So Wendy Mitchell keeps on writing, her camera keeps clicking as she trundles round her village or, as she’s recently started doing again, traversing the country, opening all our eyes to what dementia is, and how it’s possible to live a successful and rewarding life with it.

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Karen Penny is a powerhouse, a force of nature, a walking Wonder Woman. Over the last two and a half years she’s covered ten and a half thousand miles, got through ten pairs of boots, ten hats, one thousand custard creams, three birthdays and two wedding anniversaries.  And single-handedly raised £126,000 – and counting – for Alzheimer’s Research UK. I’m not sure which is the more staggering really – the ten and half thousand mile trek or the £126,000 she’s raised. Either way, it’s an extraordinary feat. Excuse the pun. 

Karen Penny has traversed the whole of England, Ireland, Scotland and Wales including over 110 of their islands. She says walking’s in her bones, and so when she saw the effects on both her mother-in-law Alma and father-in-law Kingsley of their vascular and Alzheimer’s disease she decided to put her best foot forward to raise awareness of dementia. On 14 January 2019, three years after Kingsley died, the 56-year-old retired legal professional set out from her home in Pennard on the south Gower peninsular with a 20kg knapsack strapped to her back. 

Just over a year later the pandemic struck, the country was placed under lock down and she was forced to alter her plans, returning home before setting off in permissible directions.

Karen says the darkest months were in Northern Scotland. “Part of the learning curve has been learning to cope with loneliness,” she says. “There are days that have been very hard, when you wake up questioning ‘why am I doing this, it’s hideous outside and I haven’t seen a soul for days”. 

But she persevered, powered on by the support of hundreds of people she met on the walk, some of whom were living with Alzheimer’s, and some of whom joined her for a few miles.

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In this bonus episode I talk to Jorg Roth who, in My Life Films, has created something very special for people with dementia and their families.  As with all the best ideas, it’s simple yet effective. Jorg has come to dementia not as a carer or medic, or a professional from the social care world, but as a successful film maker with a wealth of experience. 

He’s a creative with a commercial approach to dementia. But don’t switch off at the sound of what he himself calls the “C word”. Commercialism, he says, can be good. My guest knows that if people with dementia don’t rate, like and use his product, it won’t fly. For him, the user experience is king.  And the users of his product, his customers and consumers, are those living with the condition. As they might put it: nothing about us without us. 

My Life Films is a charity that makes professional quality, bespoke autobiographical films of people with dementia, for no charge to them or their families.  The films are skilfully edited, divided into short chapters depicting important periods of the individual’s life, so that he or she doesn’t have to concentrate for too long, and set to a soundtrack of their favourite music. 

The making of the film, the collecting of old photographs, memories and stories of its subject, is as rewarding as the highly watchable result. Since the charity was set up seven years ago it’s produced 300 films that have benefitted hundreds of individuals, families and carers. For, as well as the longer film, the feature-length event as it were, My Life Films also produces a short five minute, narrated version of the person’s life for formal carers so that they can get to know and really understand who it is they’re caring for. 

The finished film is premiered in the presence of its star and their family and friends. The impact on all involved is extraordinary and very moving. Some of you may remember my podcast with Mike Parish whose partner of 45 years, Tom Hughes, has dementia. Mike commissioned a My Life Film for Tom and says that every time Tom watches it he’s transfixed. “The personalised music captures his attention in a way that TV burbling in the background wouldn’t,” says Mike. “And it’s a treasure forever.”  

A My Life Film bring families together, gives friends an understanding of dementia they might never have had, and is now impressing the medical profession. A recent study at St George’s NHS Mental Health Trust in London concluded that My Life Films can lessen the behavioural and psychological symptoms of those with dementia and improve their quality of life, as well as enhancing relationships between carers and those they care for and reducing medication. Another evaluation by Hampshire County Council revealed the same beneficial consequences. What not to like?

More recently, during lockdown, Jorg and his team have set up My Life TV, aka Netflix for people with dementia, with on-demand programmes as varied asspecially designed quizzes, singalongs, chair yoga, nature programmes, archive news and shows.  Individuals and care homes can sign up for monthly subscriptions. The modest fees help finance the My Life Films. 

You can find My Life Films and My Life TV at mylifefilms.org

This week’s guests are three highly creative, very successful men who are on a mission to help those with dementia lead happier, easier, more fulfilled lives. 

Their latest collaboration is a colourful one with a powerful past that stretches back to the 18th century when trades unions were illegal and women’s votes were a long way off. 

They are: the Bard of Barnsley aka Ian McMillan, a man with so many titles it’s difficult to know which to choose, but I’ve plumped for poet, comic & broadcaster; internationally acclaimed photographer Ian Beesley; and last but by no means least, one of the UK’s most prolific & best-loved cartoonists, not to mention previousWell I Know Now guest, Tony Husband. 

They joined me to chat about the The Unfurlings, a series of richly & traditionally embellished banners which they created with people living with dementia to illustrate the best – & worst – aspects of how we as a country and a society treat those with the condition. 

Brought together in 2018 through a series of what sound like fairly riotous workshops in Exeter, the trio – along with people with dementia – compiled comments, poems, cartoons & photographs to help the public better understand what it’s really like to live with the condition. 

And in that same year, the first banner was created with Yorkshire dementia & empowerment project, or DEEP, who were campaigning for those living with dementia to be better served by public transport. The Right to a Grand Day Out, as it’s called with a nod to Wallace & Gromit, was unfurled in the middle of the rush hour at York station, with Ian McMillan reading his poems. Which is altogether a wonderful image.

Many more banners followed – from the Young Dementia Leeds Cottingley Crew marching forward together against dementia to the Budding Friends Allotment Project in Exeter digging for memory & growing stories, the Hamari Yaadeen South Asian dementia café in Leeds & Bradford’s Face It Together group who work with local businesses to make facilities such as cash machines more accessible.

What links them all is colour, humour, understanding, warmth, local knowledge & a sense of shared history. Banners traditionally represented hope for the future, they showed what ordinary people could achieve when they united in a common cause.

Lenny White, the world’s first dementia-friendly barber, lives in Northern Ireland where, at the time of recording, the date for the reopening of salons and spas had yet to be announced but it will surely be very soon. Before the pandemic hit, Lenny took his skills – and all the trappings of his cut-throat profession – around the UK and as far afield as America and Canada, setting up shop in two care homes in New York and cutting, pampering and wet shaving Auschwitz survivors in Montreal.  

Lenny’s customers are all special. All live with disabilities or are vulnerable in some way, and he concentrates his considerable energies and passion on those with dementia. It seems a strange occupation for a man who worked in sales for 20 years. But from a young age Lenny has always enjoyed getting to know people; he was just 17 when he first worked in a care home as a kitchen porter.  Even then he liked to wander into the wards and strike up conversations. 

So when, in 2015 he found himself re-evaluating his life after a divorce, he decided to return to the care sector, first as a carer and then as a care home barber. He’d realised that there wasn’t enough to occupy men living there; while many homes boasted women’s hairdressing salons, complete with soft, feminine (usually pink) touches, few if any had barbers.

Lenny completed a barber’s course while still working part-time in sales and started working in Kingsland Nursing Home in Bangor, as both a carer and barber. When he posted some of his pictures and stories online they caught the attention of the Alzheimer’s Society, who suggested that he attend a dementia-friendly course. He duly did, thus officially becoming Lenny the Dementia-Friendly Barber and utilising to great effect his twin skills of caring and grooming – there’s a particular way to cut the hair of people confined to beds and wheelchairs. 

Before Covid locked us all down Lenny was visiting well over 50 care homes, as well as hospitals and day care centres, returning every six weeks with his mobile salon, setting up his candy-striped pole, his juke box full of Frank Sinatra and Dean Martin, his old-fashioned posters and paraphernalia, scenting the air with a spritz of cologne and Old Spice aftershave and treating his all-male customers to the full barbering experience. 

“Men love getting together with other men and having a bit of a banter”, says Lenny. “Just because someone has dementia it doesn’t mean they have to lose out on things like this, in a sensory environment”. 

Lenny’s learnt a lot from people living with dementia, explaining that he meets them, “where they’re at”, slowing himself down and becoming more patient. And he regards it as a privilege to get to know the individuals and their families, sometimes giving head massages and haircuts to men nearing the very end of their lives. 

In 2017 Lenny’s inspirational, pioneering work was recognised by the Northern Ireland Alzheimer’s Society when he was honoured for his outstanding contribution at the Dementia Friendly Awards.

For Lenny though, the rewards and support definitely work both ways. “These men are waiting for me and I love looking after them,” he says. “But I don’t think they realise how much they are looking after me; they definitely help me – I’ve found a purpose in looking after them. I just treat them as a friend. Dementia doesn’t even come into it; I just see them for who they are”.

For the past 12 years, since her mum was diagnosed with, first mild cognitive impairment and then Alzheimer’s, Rosanne Corcoran has been her main carer, and in 2015 her mum moved in with her and her family. For Rosanne is also a wife and a mother to two daughters. Before she had to give it up, her career was in real estate. For this week’s podcast she spoke to me from her home, three and a half thousand miles away, in Philadelphia, USA.  

To put it bluntly, in her own words, she says she’s a full-time, sandwich-generation dementia caregiver and she’s exhausted.   And that was before Covid struck; before she lost the caregiver who came in for four hours a day so she could run errands; before her younger daughter’s high school closed. 

For months now Rosanne has barely left the house; when she does she hurries home for fear of bringing the virus back with her. She doesn’t think her 92-year-old mum Rose, who needs help with all her everyday needs, would survive were she to catch it. 

Last November, Rosanne wrote an open letter “To Dementia” for Next Avenue, an influential US website on ageing. In it she describes how the disease has taken a beautiful, independent, light of a woman and turned her into someone whose world has been shrunken to one room.  

“I am consumed with worry and fear and guilt and sadness and anger over watching my mother slip away, all the while trying to stay involved in my children’s lives,” she writes. 

Yet Rosanne still manages to be upbeat. “At least my children learn about what’s important in life; at least my mother knows she is loved; at least we have dinner together; at least we can laugh”. 

Like me, she’s found a creative outlet in writing and podcasting. Each month she writes, records, edits and produces Daughterhood the Podcast on the Whole Care Network: where her guests have ranged from Teepa Snow, one of the world’s leading educators on dementia care to our own Tommy Dunne, a Liverpudlian who was diagnosed with Alzheimer’s at the age of 58.

George Coxon is the owner and director of two small care homes in Devon. Pottles Court, which has to have the best care home name EVER, and Summercourt, both of which live by the philosophy of homely homes for life. When my guest and I talked he told me, in no uncertain terms, that people who come to live in Pottles Court and Summercourt do just that: they arrive and move in. They’re not admitted, a word more suited to hospitals. How very refreshing.  

In fact George Coxon seems altogether refreshing. For a start he’s unusual in the care sector in that he came to it from the NHS; if people do make the transfer, it’s normally the other way round. He trained first as a mental health nurse and then as a specialist community psychiatric nurse before buying his first care home in 2005 while continuing to work in the NHS until 2012. Now he’s making it his business to help bring about integration of the two services through his roles on various trusts, boards and networks. 

In a Ted talk a couple of years ago George asked his audience to think of words which, for them, conjured up the single most important element of care home life. Top of George’s own list was the word Kind. Closely followed by Keen, Safe, Fun, Curiosity and Fresh, from fresh ideas to that inviting, fresh scent that we’d all like to greet us when we visit our mum in a care home, and so often doesn’t. 

To hear the list of words that inform George’s attitude to care homes is to understand the man. For him, guarding his residents’ fun is as important as guarding their safety. The final word on his list is Time. Too often, says George, there’s a polarity between busy care home staff and bored residents.   

The pandemic has been nothing short of a catastrophe for so many care homes. For Pottles Court and Summercourt, where personal care is just one small part of everyone’s lives and the emphasis is on fun, it was a huge blow. George told me the crucial factors for people living in his care homes are: having things to look forward to, having time to reflect on the past, receiving and giving affection, and feeling useful. During the Covid crisis they were denied them all.  

Two weeks after everyone living there had been vaccinated, the virus struck Pottles Court. The 17 people who live there were confined to their bedrooms for 14 days. “It was really grim,” George says. “When they wanted to get on the move we had to usher them back into their rooms. It was very difficult”.   In the end, they lost four residents, all in their 90s.

“People were bunkered,” George says. “It felt punitive. We normally have a calm, easy-going atmosphere and in many ways when life was limited for safety reasons, that caused more harm”.  

He admits that last year was challenging in terms of communication and documentation, and says the key to meeting those challenges is good teamwork.   

Teamwork, collaboration, the sharing of best practice among different sectors of health and care, and leading by example lie at the heart of what George Coxon does. Not forgetting fun, of course.

“Care homes,” he says, “touch every base. I can unquestionably say with absolute sincerity that work in progressive, energised care homes provides a special kind of buzz and thrill to those associated with them. There is nothing like the satisfaction you get from life in a great care home – as a resident, a worker or an owner”.

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Costa-award-winning author Keggie Carew and I chat about her dad and his dementia, about the twists and turns of family life, about forgiveness and about that strange, intangible thing called love. All themes that are skilfully woven into Dadland as its mesmerising narrative flits about in time. 

Dadland tells the story of Keggie’s father, Lieutenant Colonel Tom Carew, a dashing maverick and daredevil hero of the second world war who was awarded both the Distinguished Service Medal and the Croix de Guerre. In 1943 he joined Churchill’s Special Operations Executive, becoming an undercover guerrilla agent in first France and later Burma.

As well as being a natural rebel made for this role, the three-times married Carew is father to four. He’s an exciting – if challenging – dad. Who wouldn’t want to boast to their schoolfriends that their Secret Service dad had been described in the Times of India as Lawrence of Burma? 

It wasn’t until his final years that Keggie found, up in his attic, a haul of yellowing letters, diaries and papers. Through them she painstakingly pieces together the details of his remarkable life. The heart-breaking twist is that even as she’s discovering her dad, he’s succumbing to dementia. He’s leaving her. 

“We sit together in the garden and watch the sun set across the pasture,” she writes of her and her father. “Insects rise, the day’s last rays snagging their gossamer wings .. He is completely immersed in it. I watch him watching. He is far away. We sit together, floating in and out of each other’s consciousness .. His world is fading. Coming and going in front of his own eyes; each name hazy, each face a blur of memory. Every house he lived in, every girl he loved, slip-sliding away. Night is beginning to surround him. He stands helplessly, ears ringing with noises he cannot understand, words that don’t make sentences, sounds that don’t make words, faces that are completely new to him, places that he knew so well until yesterday. The hourglass has slowed and quickened simultaneously. And yet. The idea of one day him not being in the world seems an impossibility”. 

Keggie’s powerful debut work is imbued with the sadness of losing such a man and of him losing himself. How could someone so fearless and dazzling have come to this is its constant underlying refrain. It’s an exploration not only of Tom Carew, but of how we all change and develop through life, yet remain fundamentally the same, and about how our parents’ ways – their talents and flaws – flow inexorably into us no matter how hard we push back. 

My mum adored Nobby Stiles. She didn’t watch much football, but she loved the cheeky chappy with his famous gap-toothed grin who, having played every minute of England’s victorious 1966 World Cup, celebrated his team’s 4-2 win over Germany by dancing a jig on the Wembley pitch with the trophy in one hand and his false teeth in the other. 

His son John, my guest in this episode, says that when his dad was living with dementia he used to drive from Doncaster to visit him with knots in his stomach.  “I felt sick. It was a living nightmare to see such a lovely man disappear in such a brutal way.”  Many of us know exactly what he means.

Norbert Peter Stiles was born in Collyhurst a working class suburb of Manchester. The son of an undertaker and a machinist, he followed Manchester United, played for England Schoolboys at the age of 15 and, in 1959, fulfilled his childhood dream and joined his beloved team as an apprentice.  He debuted for his country against Scotland at Wembley in April 1965 – his aggressive ball-winning technique didn’t please everyone. “I got slaughtered in the papers, absolutely slaughtered,” Nobby said, but he never let the criticism put him off. 

Nor did the England manager, Alf Ramsey, who threatened to resign when the sports governing body demanded that he drop Stiles for the 1966 World Cup quarter-final following a robust challenge in the final group game against France. Ramsey would later say that he had five world-class players and Nobby, a great reader of the game, was one of them. 

A national star then, but also a hero in his home city of Manchester. Stiles made almost 400 appearances for the Red Devils, helping them win two league titles as well as the European Cup in 1968.

But in 2002 Nobby suffered a heart attack and a year later, aged 61, he began to show signs of what was later to be diagnosed as a mixture of vascular and Alzheimer’s dementia. As his health worsened so too did his finances and he was forced to sell his World Cup winner’s medal and other memorabilia.

Following Nobby’s death the Stiles’ family are speaking publicly about dementia’s terrible toll on not just an individual but a family – and about the unfairness of a system that sees those with other diseases being given free NHS care while those with dementia have to pay. 

Having long suspected that Nobby’s dementia was caused by the innumerable headings he made during his career, the family made the brave decision to donate his brain to research into the links between the disease and the sport. In an emotional Zoom call a few weeks ago, neuropathologist Dr Willie Stewart, confirmed their fear.  

The Stiles family may have been vindicated, but they are angry. Because way back in 2002 West Bromwich striker Jeff Astle was named as the first British footballer known to have died from repeatedly heading the ball – and yet until recently no research has been done into the link. 

“That’s almost 20 years of players – men and women – at risk with no restrictions. Unprotected. Uninformed”, says Nobby’s son John, himself a former professional footballer. “There is a cancer in football of denial and defence. These players need help and they need it now. And there’s been virtually no help. That’s a disgrace”. 

Peter Berry and Deb Bunt met by chance – through the spin of the wheel one might say – in Sax Velo, a cycling shop in Suffolk in 2018. Deb (together with husband Martin) had recently retired and moved to the market town of Saxmundham. Peter, a Suffolk man through and through, took over his father’s timber business; for him the trees and woods of his county are as familiar as old friends and family. Peter is also a keen cyclist and, aged just 50, he was diagnosed with dementia.  

Deb knew no one in her new neighbourhood. And very little about dementia, other than holding the common and mistaken belief that it only came with old age, liver spots and false teeth.  Peter, slim, fit, and living with Alzheimer’s when she meets him, not only blows apart this myth but offers to show her some local cycling routes. And so an unlikely friendship begins. 

Like all the best friendships it’s mutually reciprocal, hugely rewarding for both, and based on trust. It’s been captured in a remarkable book, brilliantly entitled Slow Puncture. It tells of their year together and in doing so, lays bare Peter Berry’s tumultuous Alzheimer’s journey in his words. So they are co-authors but it is Deb Bunt who has written it. Peter simply can’t. What’s more he will never read it. He will never, in fact, read his own story.  

The more the pair cycle together over the months, the more the trust builds between them and the more Deb learns, not just about Peter and his dementia monster, his ways of coping and his hidden demons, but about herself.   

Peter shows her the joys to be found in living in the moment and of celebrating the journey for what it is even if you lose your way and end up, as it were, in Orford instead of Framlingham. “It is perhaps a cruel paradox that Peter’s dementia, which is chipping away at his world and shrinking it, has created a whole new world for me,” Deb says. 

While, in his inimitable way, Peter tells her that while the condition’s taken so much from him – his income, his self-esteem, his future, he has taken a lot from it. “I live every day; I enjoy every day even if I might forget it moments later. They say you only live once, but that’s rubbish: you only die once. You live every day. And that’s what I fully intend to do”.  

Slow Puncture: Living Well With Dementia by Peter Berry and Deb Bunt is available from Amazon.  Advice and support for people living with early onset dementia and can be found at www.youngdementiauk.org