Rosanne’s Story

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

Rosanne Corcoran is a carer – or to use her American word, a caregiver.  She is also a daughter, wife, mother and podcaster.  This week she spoke to me from her home in Philadelphia, USA .   Her dad died when she was 16 and she’s very close to her 92-year-old mum. 

For the past 12 years, since her mum was diagnosed with, first mild cognitive impairment and then Alzheimer’s, Rosanne has been her main carer, and in 2015 her mum moved in with her and her family.  Before she had to give it up, her career was in real estate. 

To put it bluntly, in her own words, she is 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 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.

Speaking to Rosanne about her roles as carer, mother and podcast host was a delight.   She’s warm, honest, knowledgeable and – despite her mum’s sleep patterns ensuring she rarely gets to bed before the sun comes up (the day we spoke it was 3.15am) – fluent and charming.   But why take my word for it?  Tune in to any of the podcast platforms above to hear her fabulous mid-Atlantic voice.   

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Homely Homes for Life

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

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 George 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.

“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.

“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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Dadland

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

Dadland, the 2016 Costa book prize winner, was described by one of the judges as the most unconventional biography she had ever read.  And it is.  It is also extraordinarily beautiful, moving, funny and haunting.  

It tells the story of 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 Carew’s daughter 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. 

Keggie Carew

She is Keggie Carew.   And in this week’s podcast she talks to me 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. 

“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. 

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A Footballing Legend

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

In this week’s episode John Stiles talks to me about his father, who died of dementia, aged 78.   Nobby Stiles was a legend.  It’s an overused phrase.  But he was.  I know nothing about the sport he played – he was a footballing great – but even I know his name.  Anyone over a certain age can’t fail to.

My mum adored him. She didn’t watch much football either.  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. 

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. 

The midfielder earnt his first team debut a year later and was an energetic tackler, feeding his forward line of Bobby Charlton, George Best and Denis Law, helping them win the First Division title and catching the eye of England manager Alf Ramsey. 

Stiles debuted for his country against Scotland at Wembley in April 1965.  But 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. 

And nor did the England manager, who threatened to resign when the sports governing body demanded that he drop Stiles for the 1966 World Cup quarter-final against Argentina 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.  

His later managerial career never equalled his success on the field – John says his  dad was too nice to be a manager – and he had some low times.

Others though, saw his strengths.  United invited him to be team coach and in the early ‘90s he nurtured the likes of Ryan Giggs, Gary Neville and David Beckham from the academy to the first team.  

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.  At one point his bank card was declined at a cashpoint for insufficient funds. It seems almost unbelievable that it should come to this for such a sporting great. 

Following Nobby’s death in 2020 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 , 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”. 

 

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