Well I Know Now with Pippa Kelly

When her husband Geoff went to live in a care home several years after he developed dementia Zoe Harris soon realised that his lack of verbal communication was not only impacting on his quality of life but severely compromising his health. Because Geoff couldn’t tell his carers that he liked his coffee black they made it white, he didn’t drink it and in the space of two days became dangerously dehydrated. 

Never one to sit and moan, Zoe took matters into her own hands. Nothing radical. She just jotted down Geoff’s preferences on post-it notes and stuck them round his room, thus ensuring that all his carers – even new ones or holiday replacements – couldn’t fail to see them, read them and act on them.  

This simple personalisation process proved so effective that very soon the care home manager asked Zoe if she could replicate the system for other residents. And from these humble beginnings grew Zoe’s various award-winning enterprises – all designed to ensure that people with communication difficulties (whether because of dementia or other conditions) can convey their wishes. 

Zoe went on to found first carechartsuk.co.uk, then mycarematters.org and myfuturecare.org

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When her own life hit a rough patch and she was brought very low, actor, writer and television producer Susanna Howard quite literally wrote her way out of it. She let her words flow onto paper, never letting her pen stop and not allowing herself to think too much. 

The results surprised her. “I was reconnecting to myself,” she says.  Realising she was onto something, she decided to share the idea and help others who, like her, had found themselves in a dark place, for whatever reason. Susanna believes, wonderfully, that “If you believe in people they can achieve anything.” 

From a pilot project in the elderly care unit of Guys and St Thomas’s in 2006 her work has grown into the charity Living Words. Now Susanna and her team of trained artists run three month long care home residencies, working one to one with people in the late stages of dementia who would normally be considered unable to communicate, carefully and skilfully enabling them to do so through their own words. 

The charity’s work has been showcased at prestigious venues throughout the world and in 2014 Living Words published its first anthology of words and poems of people experiencing dementia. Called “The Things Between Us”, it was acclaimed by no less a person than former poet laureate Sir Andrew Motion. Last year Susanna was named on The Independent’s Happy List celebrating the 50 most inspirational people in the UK, whose kindness, ingenuity and bravery have made Britain a better place to live. 

This week’s podcast is played out with Funny Old World, lyrics by John Offen who is living with advanced dementia and Susanna Howard, founder of the Living Words charity. John's words were set to the music of Marit Rokeberg and sung by London Contemporary Voices. 

You can find out more about Living Words (and listen to Funny Old World) on their Facebook page:https://www.facebook.com/livingwords.org.uk

Their website is: http://livingwords.org.uk/

And more support for those with dementia and their families can be found athttps://www.alzheimers.org.uk/

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Creative from the tip of his head to his northern roots – he was born in Blackpool – cartoonist Tony Husband shows no sign of letting up as he approaches his seventies. His spare, witty drawings have appeared in virtually all of our national newspapers and magazines, and following the death of his dad Ron in 2011 Tony has turned his considerable wit and skill to raising awareness of dementia.  

Ron lived with vascular dementia for his last few years and in this podcast Tony tells me what his dad’s experience has taught him about the power of creativity, humour and music to connect with others. Most of all, he says, it’s shown him that no matter what dementia stole from his dad, he always remained just that, his dad.

Tony mentions his work with the Exeter branch of Dementia Action Alliance. The alliance has just moved from dementiaaction.org.uk (the website I gave) to nationaldementiaaction.org.uk, though all relevant information can still be found on the old website.  You can buy Tony’s cartoon book Take Care, Son: The Story of my Dad and his Dementia from Amazon.  And, as ever, for more help and support for anyone affected by dementia you can visit dementiauk.org and alzheimers.org.uk

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Young mum Suzy Webster is quietly very strong. She has a softness about her that belies her courage and determination. Not many of us possess the generosity of spirit or wells of emotional, physical and mental strength to invite our elderly parents come and live with us, particularly when one of them has dementia. This young mum from Chepstow, ably and wisely supported by her husband Andrew, does. She never shouts about it, or judges others against the way she lives her life, she simply gets on with it with steely, dignified grace. She will kill me for writing this, but she humbles me.

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Sally Knocker works tirelessly to enhance the lives of older people and those with dementia. I doubt she even sees it as work because she is so naturally compassionate and empathetic. 

For her – as with other guests to whom I’ve spoken for this podcast – there is no them (those we are caring for or those with dementia) and us. There is just us. This ethos lies at the heart of all that Sally does. She is generous of both her time and her emotions and she is genuinely interested in other people. All other people. 

This wonderfully engaging woman is perfectly suited to her work which, at the moment, is on behalf of an agency that partners with other care organisations to support those with dementia to live meaningful lives. They can be found at meaningfulcarematters.com. 

 

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Chris Roberts has the most fantastic attitude to life. “Take it by the danglies,” he cajoles us all. “And run with it!”  This enviably positive approach might be because of – or despite of – his dementia, which he began to develop a decade ago when he was just 50 years old.  It’s a view that is undoubtedly strengthened by the deep love and support of Jayne, his wife of 26 years.

It was a joy to talk to the couple down the line from their home in Rhuddlan, North Wales during Covid lockdown. I’ve long admired them for their wit and wisdom, their courage and powerful insights into living with Chris’s mixture of Alzheimer’s disease and vascular dementia – with a dollop of the lung condition emphysema thrown in for good measure. “I’m just greedy,” laughs Chris. And my conversation with them didn’t disappoint.

Theirs is, in fact, a love story that opens with the flighty giddiness of youth, develops into the multi-layered complexities of family life and, after taking a seismic hit in the form of early onset dementia, subsequently adapts to the devastating fall out as the pair of them mine new depths of mental and emotional strength in adversity.

“Chris has always been the man I’ve loved,” Jayne told me. “But it has only been since his dementia diagnosis that I’ve seen what he is capable of”. 

The podcast is a must-listen for anyone interested, not only in this incurable condition, but in life, love and relationships, in honesty and trust.

Useful websites: www.youngdementiauk.org; www.alzheimers.org.uk and www.dementiauk.org

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In my first podcast I meet the acclaimed interior designer Nula Suchet whose late husband began to develop Pick’s disease, a rare form of dementia, when he was just 57. This warm, passionate Irish woman tells me that she didn’t even know what dementia was when James first started to show symptoms. She describes how isolating it was as she struggled to look after him and her shock at the lack of support. We hear how her extraordinary love for James remained undiminished even as dementia stole him away and how she found new happiness with broadcaster and journalist John Suchet, whose late wife Bonnie also developed the condition. Nula and James’ story is told in her book The Longest Farewell and, though one of sadness and pain, it is also – wonderfully and surprisingly – one of hope.

Nula’s book, The Longest Farewell, is available from www.amazon.co.uk and other useful websites are www.raredementiasupport.org, www.alzheimers.org.uk and www.dementiauk.org

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