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Living Words

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: Apple iTunes, Acast, SpotifyGoogle, Podtail or Castbox.

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.

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

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Well I Know Now

You can hear my podcast, Well I Know Now, by clicking on any of the links below:

Apple podcast Apple iTunes Acast Podcast Acast Spotify Spotify
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It’s six years since I started my dementia blog and I’ve lost count of the number of times I’ve found myself saying, “I wish I’d known that then, when mum was alive”.  Indeed, the main objective of all that I write and say about dementia is to share my newfound knowledge so that other families going through what mine did, are better informed.

So when it came to choosing a theme for my new weekly podcast series, which you can listen to by clicking on the arrow above, was simple.  I’d ask each guest to tell me the three things that their dementia experience – whether as someone living with it, a relative, carer or professional – has taught them.  To say what they know now that they didn’t before – about the condition itself, about themselves, about life, about anything and everything.

In these unsettling times, with dementia the main underlying condition of Covid-19 deaths (accounting for one in five of coronavirus-related fatalities),  I want this series to spread some light.  I know that may seem a tough ask.  But this podcast is – I promise – uplifting and informative, humorous even, offering listeners the chance to hear some comforting, friendly voices.    It’s my first attempt at hosting pods so please excuse any rookie mistakes, but I know that my wonderful guests will more than make up for my lapses.

Next up: what to call the podcast?  I’m an English graduate, and I love a female author.  So I turned to my all time favourite, Jane Austen.  Elegantly waspish, surely she’d have something to say?  But no.  I couldn’t find any pertinent pearls in her Regency drawing rooms.  Iris Murdoch?  The genius who herself succumbed to dementia must have a quote for me. Sadly not.  And then I stumbled across an utter gem from, of all people, Sylvia Plath.

The American, who took her own life so tragically young, isn’t someone whose work I know well.  But tucked away in her early journals, written when she’d just started at Smith College, Massachusetts, is a description of a snowfall.  It is, she says, like any other snow, but from a different window, a different perspective, “and there lies the singular charm of it”.

She writes of “scatter-brained flakes” circling down in aimless swoops and spins, and though she has a Botany exam in two hours declares that she “must stop a little, and look”, which she does, beautifully detailing what she sees.  She is living in the moment.  Which, as so many of those with dementia tell me, is a rare upside of their condition, as profound as it is surprising.

“Well I know now,” Plath records in 1950.  “I know a little more about how a simple thing like a snowfall can mean to a person”.

I’d found my title.

I hope you like it.  I have to say it’s proved a very rich seam.  There is so much knowledge out there, if only everyone who needs it right now knew how and where to tap into it.  Which is where my podcast comes in.

Every one of my guests has stories to tell that will either resonate with listeners or  inform them, reassuring those who have recently been diagnosed with dementia  – and, importantly, their loved ones – that they are not alone, that there is life, albeit a different life, after diagnosis.

In the first episode Nula Suchet recounts the devastating shock of discovering that her husband has developed Pick’s disease at 57. She talks of her numb disbelief transmuting into a fierce determination to hold onto the man she loves for as long as she can in all the ways that she can.  She is a compelling, passionate speaker and a warm, generous woman with much to give and many valuable insights to share.

Precisely because of her husband’s dementia, Nula meets the broadcaster John Suchet, whose wife Bonnie also has Alzheimer’s disease and in time, after both their spouses have passed away, John and Nula marry.  So her story, while very moving, ends – surprisingly and joyously – with hope.

Second in the series is a couple some of you may know.  I thought I did, but I was bowled away by Chris Roberts’ selfless wisdom and foresight, and deeply touched at his wife Jayne’s love for him.   Chris, for anyone who doesn’t know, was diagnosed with vascular dementia and Alzheimer’s disease a decade ago when he was just 50.

You’d be hard-pressed to tell this from the podcast.  This is of course largely down to Chris and no doubt he was tired at the end of our lengthy chat. It is also because Jayne subtly, with an ever so gentle touch, looks out for him.

It is also down to my fantastic sound engineer Gareth.  I had recorded three face to face interviews when coronavirus forced us into lockdown.  My Iphone was no longer going to cut it.  If I wanted to persevere with the series I needed something altogether more technical, complicated and, let’s be honest, totally beyond me.

By phone, Gareth talked me through the online purchase, installation and mastering of a nifty piece of kit that enables me to record guests down the line from their homes.  Because of his dementia Chris, fluent and clever as he is, often forgot to speak into his mobile and at times I could barely hear him.  But Gareth’s expertise produced the final, high quality version that you will all hear.

Next up …. but no, I must maintain an element of suspense.  Needless to say, I have some cracking guests – from carers and relatives who have turned their experiences into enterprises and charities to authors and professionals, all with an interest in dementia.

I hope you enjoy listening to the series as much as I’ve enjoyed recording it.  And if you do, please rate, review and subscribe on whichever platform you’re using to help spread the word, thereby reducing the stigma and increasing the knowledge around dementia.   As well as listening through my blog, the podcast is also available on Apple ITunes, Acast, and Spotify (where, for the moment, you have to search Pippa Kelly).   Finally, and very cheekily, if you do listen and you rate it, could you rate it (see what I did there?) and subscribe.   Thanks.

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