This Is Your Life

proper georgeThough I never met him I feel that I knew George Arthur Moss who was, to use his own words, “a fairly quiet man with a good sense of humour”.  Others describe him as caring and gentle.

George died in 2008 aged 86, having been diagnosed with dementia four years earlier.  Now that I’ve come to know this Oldham man a little I’d say that he was warm and creative, fond of the outdoors, walking and gardening.  A technical illustrator, he was also a talented artist and he loved to dance.  The most important people in his life, so his words tell me, were his family.

I wish I’d met George in person.  As it is, I know him through his Life Story Book, and while he was alive, this was how his carers came to know him.  Take a look and you’ll see how the collection of George’s words, pictures and photos of significant moments in his life reveal the man he was.

For the year he lived in a care home his Life Story Book (created months earlier) proved invaluable, both for those looking after him and for George himself, as his daughter Jean Tottie, now Chair of the Life Story Network, a community interest company dedicated to promoting excellent, individualised care through life story work, explains.

“We looked for a care home for dad close to where we lived in Yorkshire.  I gave dad’s Life Story Book to the manager before he moved in and the day dad arrived the manager didn’t talk to us, but to him, which was just as it should be; it turned out the two of them shared a love of rugby.

“My dad was so proud of his book.  He showed it to other residents and every member of staff read it with him and found something of common interest to talk to him about – dad’s care plan centred around the book”.

Jean, a retired occupational therapist whose career spans 35 years in health and social care, readily admits that even with her professional knowledge she found it hard to navigate her way through the system when her father developed dementia.  It was Polly Kaiser (a clinical psychologist, doctoral supervisor and member of the Oldham Life Story Group) who suggested to Jean that one of her students could create George’s life story while he was still living at home.

Jean jumped at the chance because, though unsure precisely what life story work entailed, she recognised its potential value.  So it was that Chris, one of Polly’s post-graduate students, made weekly visits to George for three months, talking to him and gleaning information to include in the all-important book.

Life Story NetworkThe Life Story Network, which collaborates with a diverse range of organisations to enhance the quality of care of individuals such as George, was born in Oldham (to which all roads seem to lead in this particular story).  It was the late 1990s and a man called Ken Holt was caring for his wife Alice, who had dementia.  When Alice moved into a residential home Ken thought he’d write a little story about her so that her carers would know exactly who she was.

He wrote that if Alice resisted putting on her nightie at night this might be because she thought she was going into an air raid shelter.  “You need to know these things about my wife”, Ken told the home.  How right he was.

Ken understood the benefits of life story work because he’d seen how it helped children in care.  And he and Polly Kaiser set up a local steering group to spread the practice – which was where Jean first encountered Polly.

Having experienced life as a carer from both sides of the fence – as a professional helping others and as a family carer herself – Jean has always been keen to “give something back”.   She was lucky to receive the support of an Admiral Nurse (a specialist nurse focussing on the family carers of those with dementia) and after her father died she became Chair of Uniting Carers, a network of family carers that until recently existed under the umbrella of Dementia UK, the charity that provides Admiral Nurses.

With the same altruistic motive, and though her emotions must still have been raw, six weeks after George died Jean agreed to give a talk on the value of life stories at a symposium in York.  Ken Holt was due to speak but because he was unwell Polly conducted a video interview with him in which she asked about the future; Ken replied that they should set up a national network.  The Life Story Network, set up as a community interest company in 2012, is Ken’s legacy.  He died two years ago.

One of those in the audience at the symposium was Ruth Eley, then head of the national programme for older people and dementia at the Department of Health.  She immediately saw the relevance of life story work to the Government’s dementia policy and helped Jean to corral other like-minded professionals such as Anna Gaughan, who was then leading the Department of Health’s Dignity in Care campaign in the north-west.

Yet another steering group was formed and in February 2010 the idea for a national life story network was launched at a conference in Leeds.  On the back of this successful event the group set up their website and (having secured a £200,000 grant to train staff and carers in life story work as part of the Government’s Dementia Strategy) formed the community interest company that exists today – with Anna as chief executive, Polly as a director and Ruth as Jean’s vice-chair.

So, fittingly, the Life Story Network’s own history is all about networks and the coming together of like-minded people.  And its story isn’t over yet (I doubt – and hope – that it ever will be).  It has just announced that to take the place of Uniting Carers (and building on the work of the Carers Call To Action which ended in March) it is setting up a new network for family carers of people with dementia, for which it has secured start-up funding from the Department of Health.

Discovering George Arthur Moss through his Life Story Book reminded me that we are all so much more than the aspect we present to a stranger for the very first time.  When we’re independent and can communicate clearly, this doesn’t much matter, but if and when our health fails or for some reason we become dependent on others, it is vital for them to know who we are.  Of course it is.  Put like that, it sounds so obvious, so simple, so human.

Jean told me that, having seen how Chris engaged with her father to entice his story from him, she now feels quite envious of carers embarking on life story work.  I understand what she means.  But at least George’s carers knew who he was.  Now, thanks to his daughter Jean and the Life Story Network, many more people will be known, treated and respected for the unique individuals they are.

this is your life book

12 Responses to This Is Your Life

  1. Donna Thomson 11th April 2015 at 1:23 pm #

    Thank you for sharing this wonderful idea. I’ve added it to the agenda for our son’s next person centred planning meeting. This is so inspiring and I’ve shared your post widely with the heading “This is truly, deeply wonderful!” Thank you!

    • Pippa Kelly 11th April 2015 at 1:43 pm #

      Many thanks Donna. It was great to talk to Jean and discover exactly what it is that Life Story Network (about which I’d heard so much) actually does – which turns out to be so very inspiring. As someone tweeted in response to the post: “I love their work. Gather & share information, build relationships, develop empathy, enhance care. #keepitsimple” I couldn’t have put it better!

  2. Marianne Vincent 11th April 2015 at 1:49 pm #

    Another very important way forward in preparing people, both those living with dementia and their carers in coping with the changes dementia may cause. By equipping people with a written history highlighting the individual’s likes and dislikes, hopes and dreams, we can begin to see what makes up the person and hopefully share and re-ignite memories. Creating a safe and comfortable environment, including a mental sense of well being is imperative in the care of all in dealing with dementia. The life history book is a step in the right direction and should be applauded.

    • Pippa Kelly 11th April 2015 at 2:02 pm #

      Many thanks Marianne. I wished I’d done this for my dad, who didn’t have dementia but in the last years of his life lost his mobility and power of speech. As he was dying one of his newly appointed carers noticed a photo beside his bed and exclaimed in surprise at what a fit and slim man he’d once been. She saw him only as the helpless, bloated figure he’d become after being fed by a tube in his stomach for two years – not as the wonderful man who, late into his 70s, still chopped his own firewood.

  3. Pat Broster 11th April 2015 at 3:50 pm #

    Hi Pippa thanks for articulating Jeans story into such an impactful piece of writing. I’m privileged to have joined jean, Polly,ruth and anna 2 years ago after losing my mum and mother in law to dementia.
    I was on a mission to change the experience for carers of people with dementia as my caring journey had been a struggle to access the right support and care. I’m proud that jean and I are leading the work to establish the national Family Carers Involvement Network. This will provide a platform to give family carers a collective voice to improve support, services and commissioning for their loved ones other carers and themselves
    We look forward to many people giving us support as you have Pippa. Your doing a great job. Thanks

    • Pippa Kelly 11th April 2015 at 5:29 pm #

      Many thanks Pat. I’m always delighted to highlight the inspirational, innovative & creative work of so many organisations like yours, which tend to go unsung and even sometimes, sadly, unknown. I merely write, others like you act – to great effect.

  4. Dr. Deborah Forrest 13th April 2015 at 2:36 pm #

    This was simply a Brilliant idea that has led to some many positive outcomes.
    Congratulations to everyone involved!

    Deborah

    • Pippa Kelly 13th April 2015 at 5:12 pm #

      Thanks for that comment Deborah. I couldn’t agree more!

  5. John 14th April 2015 at 11:17 am #

    Thanks for writing this blog Pippa, it’s fab and captures the essence, importance and impact of some of what we do here at Life Story Network, it is moving and very much appreciated.

    You readers may want to have a look at the following links which provide a free ‘portal’ which allows life stories to be captured by uploading pictures, video, music or simple written text, the link is:

    http://www.lifestorynetwork.org.uk/your-life-stories-matter/

    The second link is to the In Your Words page which has the life story books of both Mr George Moss and also Mr George Morris, in addition to short feedback/testimonials from other people who have benefited from our work, the link is:

    http://www.lifestorynetwork.org.uk/in-your-words/

    Once again Pippa, many heartfelt thanks for sharing the story of Mr Moss, his Daughter Jean and our work.

    John.

    • Pippa Kelly 14th April 2015 at 3:04 pm #

      Many thanks indeed John. It’s you and the team at Life Story Network who are to be congratulated on enhancing the lives of so many people, not just those who have dementia or are frail, old or ill, but their carers too. I merely write: you do. Good luck with all your future plans.

  6. Cally Madden 23rd April 2015 at 2:38 pm #

    Pippa, thank you for sharing this great idea and story. Life histories are something that we record for our residents, who are disabled veterans and their spouses, at our charity, The Royal Star & Garter Homes. We have many other innovations in dementia care which we’d love to share with you, especially as we approach Dementia Awareness Week. Please do get in touch if you would like to find out more.
    Let’s share our ideas to promote better understanding and innovation in dementia care.
    Best wishes
    Cally

    • Pippa Kelly 23rd April 2015 at 7:47 pm #

      Many thanks Cally. I will be in touch.

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