What I loved about the dementia writing project was the multiple and shifting aspects of working with such a wide range of people who were all focused on one topical subject – dementia.
Firstly, the older people themselves. They proved that although dementia is a medical condition that gets some of us in later life, taking away vital functions like short term memory, it does not prevent the individual person struggling to be recognised and acknowledged.
Secondly, we met care staff who go way beyond the expectations of their job description, with a kindness we all admired, but they still found time to take an interest in the writing project.
Then the scientists, who are making such interesting discoveries based on facts and evidence, yet all acknowledged that creativity and writing has an important role to play in raising awareness of dementia, and supporting scientists and clinicians in thinking about how they talk to dementia patients. .
It was also fab to be working with a team of writers, designers, photographer, animator, managed by New Writing North who juggled funder’s requirements and deadlines while still keeping the soul of the project focused on creativity with words, words, words.
Most of all, I learnt about myself and my own writing. Following all the conversations with dementia clients, scientists, clinicians and carers, my imagination went in two completely different directions!
I discovered that I could create a kind of social realism in the Dementia Dilemmas series of ‘flash fiction’ stories produced for the project. At the same time, I began to write an Atwood-esque fiction based in a dystopian world where dementia is an inconvenience to be controlled and silenced. This latter fiction was informed, no doubt, by the media headlines that reinforce the negative stereotype that living too long is a burden on society. Perhaps the media could change tack and celebrate a culture in which the joy of living has no age barrier. Don’t we all want that for ourselves and our loved ones?
This is a video of the event, What About Me?, that was held at Live Theatre on 25 April 2012. It showcases some of the ongoing discussions between writers and scientists which the project made possible; we hope they will continue long into the future.
This six month project has been mind-opening. The time went by too fast.
It was a privilege to be given such generous access to the thoughts and conversation of the scientists and clinicians. The booklist their suggestions have left me with will keep me going for months. So much has been fed into my brain – I am still processing it all, but if I am forced to pick out my most leading impressions, they are these.
When I went into the care settings I found what I looked for – individual human beings who might like to talk to me. I also found more. A place that was run by over-worked, publicly under-appreciated, amazing human beings who, with their clients, made the protected space of the day care centre one of the most kindly human environments I have ever been in.
Short-term memory loss strips a person of their pretences. As a so-called “healthy” person engaging with the “ill” person, you have to be able to take directness and honesty, but once you put aside your own fears and assumptions, there is so much to learn about slowing down and ‘being in the moment’ alongside fellow human beings.
The language of fear and deficits that surround the very ring of “Alzheimer’s” and “Dementia” is the burden society inflicts on the sufferers on top the trials of their disease. It was my experience that the benefit of taking the time to sit alongside and engage over memories and stories with patients labouring under the condition didn’t just help dispel the isolation that makes this disease all the more awful; it did a lot to dispelled my own fears too.
There is so much more that can be said and learnt and done. In the meantime I will always cherish the hours I spent around the table with those most charming of companions, my ladies of the Scotswood Road, as they shared with me vivid glimpses of childhood before the First World War and after, of meeting boys’ eyes in the Bradford Barn dance at the Oxford Galleries; and memories of the gingered-haired brother with the grand singing voice, and summers dancing in the back yard, listening to the radio with the kitchen door open and setting the budgies fluttering in their cage.
Their generosity, courage and laughter remain my most vivid impression. Why are you spending time with ‘old gadges’ like us? They once asked me. My answer remains the same I told them: I can only aspire to become such an ‘old gadge’ myself one day.
Couldn’t wait to meet Geordie Sinatra, so I went to the opening performance at Live Theatre. The central character, suffering from dementia with Lewy Bodies, was really engaging and had a great voice. I was delighted that there were plenty of Sinatra songs; the audience just couldn’t help joining in at the end. I don’t want to give away too much about the story, the characters or the set – because everyone will want to see it – but it was a great evening.
The play reminded me that dementia is just one fragment in a family’s life but often it will often overshadow everything else. This is partly because the services and care are inadequate, partly because the condition is misunderstood but mostly because we just don’t know how to deal with it.
All our social norms and conventions, our day-to-day interactions, depend on short-term memory and rules about acceptable behaviour. Somehow we learn not to tell the truth when some one asks ‘Does my bum look big in this?’ Something tells us the right time and place to shake hands or to have a hug. Dementia teaches us that those social ‘norms’ don’t work for everyone: for many people who are shy or have mental health issues or learning difficulties or on the autism spectrum, it is impossible to navigate the minutiae of socially acceptable behaviour.
Coincidentally, as the play opened, there was a conference in the North East about dementia for health professionals. to share best practice, ideas and explore how dementia care can be improved for people living with the illness in the region. This was enough to get Jonathon Miles, from BBC Radio Newcastle interested in the subject. Jonathan tackles the issues of the day in his own unique way in a two hour programme each morning. One of the scientists we have worked with, Elizabeta Mukaetova –Ladinsky, myself and Fiona Evans who wrote Geordie Sinatra were all invited in for a chat last week.
Jonathon was charming and for an hour we talked about our own experience of dementia in the family, the dementia-writing project, the play, the wider question of social care and even wider questions around mental health issues.
It was fantastic that dementia was the focus of such media interest but I still felt a minor frustration that the emphasis always ends up being about the quality and cost of care. It seems to me that we need to stress that each person who happens to have an age related medical condition called dementia is still an individual. Each one still deserves the same positive attitude as the trendy footballer who breaks a leg.
Throughout this project, Fiona, Rebecca and I have been astounded at the wit, the personality and the amazing views of older people with dementia. When I asked one older woman if she was interested in the Queen’s Diamond Jubilee, she gave me quite a shock when she replied that she didn’t give a damn for royalty and what had they done to deserve to have their arses wiped by someone else!!
Older people with dementia might not care too much about what they say but they can teach us about honesty, living in the moment and being truthful with one another.
Imagine getting a packet of pasta from your kitchen cupboard, placing it on the worktop and a recipe lights up the wall behind! As well as step by step instructions of how to cook, information about the nutrients and a reminder to take your medication.
Our final meeting with the scientists was a visit to the Culture Lab at Newcastle University where the corner of a room full of ideas and inventions is dedicated to the development of the Ambient Kitchen.
This is being designed to enable older people with dementia to live independently using ‘persuasive technology’. Imagine an iPad chopping board that tells you that you are putting red apple slices in your pasta – when chopped red pepper might be a better option.
How many fictions could a creative writer scribble with that source of material? I imagine my own mother, never keen on cooking at the best of times, leaving the technology talking to itself while she popped out to the Eight Bells for a sherry. Or the confused older people becoming quite alarmed at the instant messages.
Meanwhile my own series of Flash Fiction for the project is now completed. There is that moment of grief when the final draft is emailed for the wider world; it’s a bit like sending your precious child to her first day at school and the shocking reality that you can no longer own the destiny of your offspring.
The six stories in the Dementia Dilemmas series are all trimmed and spell checked so that each one will fit onto one side of an A5 post card. Finding a design to fill the other side of the card is yet another dilemma. How to find an image that avoids ageist stereotypes yet captures the productive life of the individual before the medical condition of dementia stole their memory? How to create a design that highlights the writing and compliments the reality of the story? How to find a design that captures a wide audience as well as being used in dementia day care settings? Budgets and timescales throw in yet more considerations.
Working with both photographer and designer, I think we have got something that catches the eye and will encourage people to spend a few minutes reading the stories. The advantage of Flash Fiction is that it suits a modern age where we want instant and concise communication.
Perhaps that is what older people with dementia want too.
The sessions with older people with dementia are nearly complete, the meetings with the scientists are done, the carer conversations are over.
Now it is time to write!
But how to use my own approach to creative writing to bring together the different threads of the project?
From the outset, I have planned to create a series of Flash Fiction (short, short stories) because that is a form which seems best to reflect the fragmented mind of dementia. I want to demonstrate that, in spite of memory loss and reduced physical functions, true spirit and character still lies within each individual dementia patient. . Also, three hundred words of Flash Fiction can fit onto a poster and be read in a few minutes by a range of different audiences.
My notebook is crammed with snippets of conversations with older people with dementia that could be used as comedy or tragedy or calamity. But which approach best raises the awareness of dementia in a positive way, which is one of the aims of the project.
For example, one conversation went like this:
‘What are you most proud of in your life, Mary’?
‘Being a mother, she replied, ‘bringing up a family.
‘And how many children did you have?’
‘ I don’t remember.’
An embarrassed smile.
‘Five, I think.’
Imagine the agony of no longer being able to remember the names of your own children after decades of maternal love and exhaustion. I could turn that into either tragedy or comedy, but what message does it give about dementia? Will it feed the stereotype that batty older people living longer are just a drain on the nation’s resources?
Maybe I should demonstrate that in spite of their dementia, many older people still have strong opinions. One conversation went like this:
‘Betty, did you know this year is the sixtieth anniversary of the Queen on the throne.’
‘Can’t stand royalty. ‘
‘Not interested in the Diamond Jubilee?’
‘What have they done to deserve to have their arses wiped by someone else? ‘
Not the stereotypical answer that we might expect.
‘You’ re not a fan of the Royal Family?’
‘No I am not. And who did they kill to get where they are?’
I could not answer her question but it really made me think about royalty and its history in a new way.
Could I capture that in a piece of Flash Fiction which gives a positive image of a thoughtful and intelligent person with dementia – or would it come across as ramblings of a mad woman?
Another aspect of the project is to raise awareness of Newcastle University’s scientific research into dementia and the link between arts and science.
I have been surprised at my own response to write some kind of dystopian fiction that combines comments from dementia patients (‘Have you ever seen a group of women so quiet? Somebody must have given them all GLUE.’.)
with the image of the scientist in the laboratory, heckled by politicians and economists to sort out these irritating social problems of old age and dementia.
A cure? A control? Eradication of the disease? Euthanasia of the sufferers? .
Mmm. This could go anywhere- and may be best left for my own writing in response to the project.
Who cares for people with dementia? The media headlines suggest it is all done in care homes at great cost to the national purse. In fact, only about ten percent of older people end their days in nursing homes. Most older people stay in their own or a relative’s home, cared for by a zillion unpaid carers- usually family members or spouses, many of them older people themselves.
We were privileged to be invited to a carer group meeting that is set up for carers to share their experience, support each other and get information that might help their situation. I was knocked sideways by the parallel of the tangled nerves in thedemented brain and the tangle of carer responsibilities and emotional connections.
The enormity of the impact on carers’ lives cuts right across career plans, personal relationships, finances but more than anything else it cuts across the relationship between the carer and the dementia patient.
I have my own experience of caring for a mother who extended her eccentricity to include Alzheimer’s. At the time, my older sister found this a great relief that we could now blame mother’s strange ways on a medical condition. At first, I found it impossible to know how much of her confusion was related to her condition and to what extent her behaviour was a deliberate attempt to make my life difficult.
Stepping back, of course I knew her dementia was responsible for her looking at me in sympathy and saying
‘You look exhausted. You should give up that job; stay here for a few days and have a rest.’
This was after I had spent yet another precious Saturday taking her out for lunch, cleaning her flat, washing her laundry, searching for her wallet then restoring her flat into some sort of order after she had dragged every item from every drawer, thrown them across the room, upended the bed and moved wardrobe against the window. After that, a day in the office seemed like a day of rest and relaxation.
It is both rewarding and frustrating to care for someone you love when their own personality seems to have left the room. It is devastating to care for that person who no longer knows your name, nor recognises your face and then behaves towards you as if you are the enemy. Yet the emotional tangle, loyalty built on years of love and the memory of golden moments are compounded by the hope, no matter how ridiculous, that the loved one will in fact return.
So many of the older people we have worked with remember their days of dancing to live bands playing in local dance halls.
‘I miss the weight of a man’s arm around my waist.’ said one older woman.
But in later life, the tango, a dance of love, becomes a shuffle around the search for diagnosis, the wait for social services assessment, the criticism from other family members and the endless anxiety and fear.
Dancing to another tune becomes more than just duty; carers deserve recognition and support and the chance to hold fast to their own needs and desires.
This week we have been meeting some of the scientists working in dementia research. As Newcastle University leads the country in this field, we were very lucky that they gave so generously of their time to meet with us – three writers with obscure, non scientific questions such as –
“What is the role of the scientist /medic in the debate about end of life decisions for people with dementia?” Or “What approaches can we use to raise awareness of dementia that challenge the stereotypes of older people as a ‘burden on society’ or that the ‘real’ person with dementia is no longer with us?”
We met with experts from various fields – clinicians who see and treat dementia patients as well as neuro-scientists who research the brain for changes that occur in dementia. The research seems to focus on early diagnosis as well as trying to find a cure. Because Newcastle is a leading force, there is also international collaboration with relevant scientists across the globe. I was interested to hear that they share information to further science rather than being very protective of their discoveries
I realise we talked more about the policy and care for dementia patients than science itself. My own inadequacies were revealed as I confessed to limited understanding of any scientific concepts or terminology. I blame this entirely on my convent schoolteacher, Sister Aidan, who banned me from taking science subjects because I had put chewing gum in the Bunsen burner.
But I learnt so much! How fascinating to hear that the humble snowdrop, Galanthis nivalis, which is looking at its best right now, contains a substance which slows the development of Alzheimer’s Disease. Therefore scientists searched for a way to build Galantamin artificially and this medicine is now available. This substance can slow the development but cannot heal Alzheimer’s disease.
There was so much learning in one week that I am still processing all the discussion and feeling inadequate that I have not read more about the actual brain. I was left reeling at the difference between the mind and the brain and how little scientists really know about that connection. But I also discovered that the process of writing a scientific paper can link with intuition, not just hard data, as in my own creative writing. So we maybe had more in common than was apparent.
I left school when I was 14 to be taught from home – my mother was into educational experiments. The experience was a rich one for me and I came to think of the social convention of grouping children together by age rather odd. Why age? Why not personality or commonality of interest? This early kink in my life path probably helped me to become a writer.
Now in my middle age, I find myself spending time with groups of human beings who have been herded together under another label – the “D” word. I am working on a project that has Dementia in its title.
Outward signs collected under this label include short term memory loss, confusion and (quite logically, it seems to me, given the first two) anxiety. It also represents a Scientific Diagnosis, measured by statistically significant mental tests and digitally rendered colour photographs of a human being’s mysterious brain.
I have been spending the afternoon with a group of ladies. Their ages range from the early 70s to the early 90s. They all live in the same postcode or thereabouts, but they don’t share any other connection. They are brought together by bus at a place that offers lunch and company and activities on a particular day of the week.
We met around a folding table in the corner of a cavernous church hall. We told each other our names and agreed that we often forgot such things. (I certainly do.) I wrote the names down to remind me, and repeated them, looking into the owner’s eyes. Since I was supposed to be bringing something to our meeting I brought a conversation topic – dancing.
I had spent some time looking for short poems or passages about dance. It wasn’t a very satisfactory search. There was Byron –
“On with the dance! let joy be unconfined; No sleep till morn, when Youth and Pleasure meet To chase the glowing hours with flying feet.”
Archaic and rather inaccessible; would my new acquaintances really be interested in discussing dance in the time of Jane Austen (or there abouts)?
Then there was Lear’s owl and the pussy cat who:
“…hand in hand, on the edge of the sand. They danced by the light of the moon, the moon, the moon, They danced by the light of the moon.”
Agnes said she remembered that. But there wasn’t much more to be said.
I really wanted to share Joyce Grenfell – she always makes me and my father laugh
But we didn’t have access to the internet. Besides, the loftiness of the church hall would have swallowed up the sound and made it unintelligible to hearing aids.
So I brought a few pictures – dancing dresses for instance.
Mary said she used to dance in one like that – with a floaty skirt that spun as you twirled. Not long – to the floor – of course, but below the knee. The war was on and you didn’t have the fabric. You remade old dresses and sometimes used parachutes.
Ellen wanted to become a Wren, because she fancied the uniform but her heart wasn’t strong enough and she failed the physical. Instead she got a job as a secretary at one of Newcastle’s famous old firms. Her mother used to make her dresses. ‘I was ginger…’she explained. I could see the girl with the striking red hair. ‘I Iiked the pastel colours; lemon and pale green. We went dancing at the Old Assembly Rooms – works do’s and the like.’
It seems that Ellen was quite posh, going to the Assembly Rooms with their visiting bands. ‘Henry Hall, he used to play there.’
‘The younger people danced at the Oxford Galleries,’ her neighbour said.
But not everyone. Nora, sitting beside me, rolled her eyes –
‘Us, we just danced at Fenham Hut.’
They told me about dancing the Bradford Barn Dance and the “Buzz off” (the Geordie version of the “Excuse me”). And then we went through the song books I’d brought. We reminisced over old tunes – humming the melody and trying to remember the lines after the first verse: Red Sails in the Sunset,Hometown, and I’ll Be Seeing You in all the Old Familiar places.
I had a good time and they told me they’d enjoyed it. I went home to search the internet for recordings of War Time Favourites so I can learn the missing verses for next week.