Stories from the West Side- Chapter 7

Lin

It is a rare event for me to go clothes shopping. However, before my trip, I had purchased a rather trendy, expensive, waterproof coat in anticipation of being a proper, smart city person (instead of my usual dog-walking outfit).  I arrived at the offices of Alzheimer’s Ass in NYC drenched to the underclothes (failed expensive waterproof) at the same time as Lin, a very stylish older woman, who had not a drop of rain about her person.

We had both arrived for the ‘connect2culture’ symposium which involves several New York galleries and museums in a programme of activities for people with dementia and their carers. The symposium showed a video (now on You Tube, Lemonade.ALZ NYC)  made to illustrate the ongoing involvement of the arts in the lives of Lin, wife and carer of Matty, with dementia.  They had always been very active in the cultural life of Manhattan and the connect2 culture programme enabled them to continue. Initially Lin had taken her husband along to participative arts activities, sitting nearby as an observer, but soon she had become involved herself. She began writing poetry, painting and singing for the first time in her life.  The video was filmed partly in their Manhattan apartment and showed them both in evening dress, going out to a concert, continuing their life together in a new way.

At the end of the video, Lin read one of her poems to the symposium. She  was able to talk about her ability to deal with his dementia by using writing but also she had found new ways of thinking, not just being a consumer of the arts but becoming a contributor and creator.  ALZ.NYC  supports the participating  museums in setting up these activities by giving staff training, suggesting best places in the museum for group discussions, identifying points of interest. The impact is enormous; if ever there was an example of a Dementia Friendly Community, this would be one that costs very little and has a huge impact. Of course New York City is famous for its cultural opportunities but even here in the North East there are numerous places which could provide specific openings for people with dementia and their carers–already some do just that e.g. National Glass Centre, Sunderland.

At the other end of a plane journey, in Halifax, Nova Scotia, I met Ardra Cole, Director of Research at Mount Saint Vincent University who uses art as part of the social research process. As a result of her own experience of caring for her mother with Alzheimer’s, she and her colleague had developed several creative projects around the role of carer.  In particular, I loved the public installation which portrayed a woman’s life through underclothes on a washing line: nappies at one end, incontinence pants at the other with all sorts of fashionable undergarments in between. She had also created a small booklet ‘Alphabet of self-care for carers’ which was a simple but instructive and reassuring way to support carers.

A         Adjust your way expectations, life has changed.  Accept offers of help early and often.

B         Believe in yourself.  Be flexible, there are many ways to do things, not just the ways
you’ve always done.

Both these meetings which focused on carers reminded me of the impact of dementia on those around the person with the diagnosis; how lives are upturned and individuals reshaped. But some carers are able to accept the new situation and find positive aspects, with the opportunity for creative activities and personal expression being central to that process.  I learnt that taking care of people with dementia necessarily means involving those who care for them e.g. dementia cafés.

Throughout the final part of my visit I was reminded of the SPARK! Event in Racine where key note speaker Dr Susan McFadden reinforced that we are ALL living with dementia, that the inaccurate language and inappropriate metaphors we use about the ‘epidemic of’ and ‘war on’ of dementia ‘produce an excess disability’ which adds to the challenges for people with the disease; language which reinforces fear and unfriendliness towards people with dementia, excluding them from communities, therefore also excluding their carers as well.

At the ‘connect2culture’ symposium, the key note speaker Dr Warachal Eileen Faison spoke about strategies for communication with people with dementia: don’t ask questions involving memory which people cannot answer, be aware of changes in reasoning and problem solving, plan their dementia- friendly session times to gain maximum benefit for participants.

Lin left the symposium at the New York Chapter of Alzheimer’s Society before lunch, she had to get back as her daily four hours of care support was ending,

If it was the other way round, he would do the same for me’ she tells us. ‘I have to organise a trip to Florida, we’ve been married 52 years, we still love to travel.’

Lin: wife, carer, poet, painter, nurse, cultural consumer, New Yorker

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Stories from the West Side- Chapter 6

Neil

Another session at the Memory Centre in Brooklyn, this time as a guest of Gary Glazner, internationally acclaimed poet working with people with dementia, author of Dementia Arts and founder of the Alzpoetry.blog.

The older people attending the centre reflect the history of people migrating, growing up and working in NYC. Many different ethnic backgrounds, variety of religions and life experiences. It’s a crowded room, about twenty older people with dementia who have arrived at the day centre, looking at bit tired after their journey and change of place.  Gary takes his time as he goes round and shakes the hand of everybody in the group, already knowing some of their names, asking those he doesn’t. Neil, smartly dressed, alert, claps his hands and sings ‘Fly me to the moon.’

 I am introduced to the group as a visitor from England and Gary explains that he is going to read some of the famous English poet, Shakespeare. Wow!  I’ve never tried that! It’s a high energy session as Gary quotes some of the better known lines and people in the group respond, repeat, shout out, and contribute their own words. Neil is still singing, but not Shakespeare, ‘Fly me to the moon.’

We are all involved: myself, a local volunteer, a group of occupational therapy students, Gary leading us through acting out some well know pieces. It is surprising how many people in the group are able to join in, know the lines from Romeo and Juliet, Macbeth, Hamlet. Soundbites which we have all grown up with ’If music be the food of love’ and so on. The ‘call and response’ method is  core to Gary’s approach.

Call and response is an effective technique in reaching people living with dementia….it uses what is known as “echoic memory” … a brief mental echo that is thought to last upwards of about three to four seconds after an auditory stimulus has been heard.” The time span of four seconds is close to the length of a line of poetry in iambic pentameter.’

At first, I had assumed this was cultural difference with the New York exuberance being essential to this practice, but meeting and observing Gary Glazner during the study visit has taught me that this is something that I could use in any UK dementia care setting, with the right preparation and the right material and the right energy.

‘ …when we engage people with call and response, they become more social, more alert.’ Dementia Arts

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Gary asks people to shout out what they think about love, we are going to write a love poem using all the senses, what does it smell like, sound like. People shout out words, ‘red, violets, chocolate, roses, marriage, family.’  Everything gets written down in Gary’s notebook, everybody’s contribution is included, everyone is equally important and the repetition of the song ‘Fly me to the moon’ is not seen as a repetitious distraction.  Gary reads back the poem one line at a time, with a call and response pattern.

The session reinforced for me that people with dementia still have a need for connection, need for communication, ability to create poems for a blog, feel the importance of home, belonging to a place, being acknowledged. The skills required for facilitation can be learned but also require a certain kind of person to be able to ‘fly’ with it.

At the end of the session, Gary asks if anyone in the group has any questions for the visitor from England. I did not expect much of a response as the group looked tired from their morning of love poetry.  There is a silence, then Neil asks me directly

‘Tell us, what are you interested in?’

I explain that I live in a place quite different to NYC, I live quite near the Scottish Border, surrounded by fields. Neil is ready with another question.

‘What d’you think about the Scottish vote? Will Scotland fly solo?’

Although he may not remember what he had for breakfast, Neil knows it is the week of the Scottish referendum on independence.

Neil:  poet, singer, social, political, New Yorker

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Stories from the West Side- Chapter 5

Evadne

‘Today we are going to do some theatre improvisation.’

From the side of the room, I am watching a group of nine older people with dementia sitting in a circle with a facilitator. This is New York where I am observing an organisation providing arts activities for older people across the city.  Blinking back my surprise at this direct approach, I watch the facilitator continue

‘Who knows what improvisation means?’

It occurs to me that most of this group may not have used that word much even before they developed dementia, that this activity might be just a stretch too far.

‘Pretending.’ is the reply from one of the men in the circle.

‘Yes, we are going to do some pretending’ repeats the facilitator.

‘Sounds stupid’ says Evadne, rolling her eyes.

But within minutes, Evadne is passing an imaginary red ball across the group and calling out her name as she does so, same with the rest. Next they are on their feet, exchanging names as they move about the group, clapping hands. Laughing as she returns to her seat, Evadne repeats

‘Stupid.’

Then each person puts the name of a favourite place in New York City into a hat; the facilitator takes out one and reads out the name of a baseball stadium. She explains they are going to play a baseball game.  Evadne becomes the pitcher,  getting ready to throw the ball. Lifting her knee and turning in exactly the way I have seen them play baseball on TV, doing the ‘wind-up’ ready to throw the ball.  Norman is the batter, swinging his imaginary bat in readiness for Evadne to windup and pitch. The rest of the group is divided into supporters of Norman, playing for the NY Giants, or Evadne, pitching for the Brooklyn Dodgers. The facilitator takes the role of the commentator, talking through the action with imaginary megaphone.

I am transfixed.  They are all engaged. There is excitement, there is concentration, there is imagination, there is group coordination, there is physical movement. Nobody seems to worry that Evadne might fall or that Norman might whack someone with the imaginary baseball bat. At last, her face creased in concentration, she pulls up her knee in that bizarre baseball position which seems so foreign to our British eyes used to watching cricket. Evadne hurls the imaginary ball at Norman who whacks it right out of the imaginary stadium. The crowd go wild. Norman is thrilled, Evadne laughs and returns to her seat. Still smiling, still muttering to herself

‘Stupid.’

As a reserved Brit, I watched with awe as this seemed to require a certain kind of extrovert drive. Whilst I could see that we might think such playfulness is ‘stupid’, we know in our hearts that it is essential at every age. Our own UK expert, John Killick, has written on Dementia and Playfulness so my initial response about British reserve is totally irrelevant. It is the skill and energy of the facilitator which makes the difference, not the country of origin. The joy of an international visit is that it allowed me to experience cultural differences in so many different ways, with so many nuances especially in the way that creativity was combined with everyday interests and cultural norms such as a baseball game.

New York: the city that made me welcome, taught me lots. 'I think about you all the time'

New York: the city that made me welcome, taught me lots.
‘I think about you all the time’

If you can take a risk in the imaginary baseball game, you can take risks in other settings as well. In New York, I learnt to take risks in facilitating writing workshops with older people with dementia, that sometimes it might not work so well, some participants  may say ‘it’s stupid’,  others may take a nap or opt out of participation. However, we still need to tread the careful path of encouragement and enthusiasm.  The outcome for participants can be increased energy, improved mood and greater communication which lasts long after the session ends.

As a creative writer looking for ways to use group-work with people with dementia, I can see how theatre improvisation could be written up, turned into a series of vignettes, could be filmed, could be used with puppets in slow time animation. However the process is as important as the outcome: activities providing creative expression are more than useful, they are vital. The activity gives people with dementia a role as actor, story maker, dramatist; a further acknowledgment of their contribution and creativity.  With hundreds of students graduating from creative writing, arts and drama courses, why aren’t we training them to facilitate programmes of creative activities with people with dementia? It’s a perfect match: graduates needing employment and projects, people with dementia needing programmes of creative expression.

The theatre improvisation session closes with some music which the facilitator had recorded in response to the group’s previous discussion.  Evadne gets to dance, really dance, her own moves reflecting her African American background, her love of blues, her love of movement.  The facilitator asks each individual to shout out one word which describes how they feel at that moment.  Evadne didn’t say that was stupid.

She just clapped her hands and shouted out ‘HAPPY.’

Evadne:    dancer, philosopher, pitcher, actor, New Yorker, African American.

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Stories from the West Side-Chapter 4

Kathleen

The capital town of Victoria on Vancouver Island, as the name suggests, has a long history of British settlement with many buildings that would sit easily in Harrogate or Cheltenham. The main difference is the sea, with its harbour for cruise ships to stop on their way to Alaska. When I took a bus trip to a residential suburb by the ocean, it was clear that the demographics were similar to Torquay with an older population enjoying sea air and mild climate.  It was in Victoria that I met Isa Milman, poet and memoirist, and her client Kathleen.

Each week, Isa collects Kathleen from her home where she lives with her daughter, and takes her either to a study room in the local library or for a walk along a local nature trail.  A widow originally from Scotland, Kathleen had married and brought up her family in Canada. Her long term memory enabled her to describe being a physical education teacher in Scotland, encouraging reluctant schoolboys to learn Scottish dancing, but her short term memory was very limited.  If the weather is mild they walk along some of the beautiful local pathways and sit under an old Garry oak. When Isa read aloud the poem they had written about the tree, Kathleen clutched her abdomen and repeatedly said ‘I feel it here. I feel it here.’

Participating in the session, I observed some of the activities Isa uses with her clients which could  directly inform my own work with individuals with dementia. For example, building on Kathleen’s interest in travel, they use the resources in the library to look at photos from around the globe, sometimes creating a poem or a memoir or a story from the conversation.

Another writing activity which Isa had suggested was the opportunity for Kathleen to write a letter to those people who are important to her- living and deceased. This gave Kathleen the chance to express her emotions and her memories:  one letter to her deceased mother, one to her dead husband, one to her daughter living far away, another to an old friend.  Although she had not held a pen for some years, Isa encouraged Kathleen in signing the letters to those people who would receive them in the post: her daughter living abroad, her old friend from afar. When Isa read some of the letters aloud, Kathleen clutched her abdomen and said

‘I feel it here, I feel it here.

Throughout my study visit, I was experiencing discussions about identity through art forms, history, people’s own stories. I noted the experience of First Nation Canadians celebrating their identity through their roots, their land and their connection with the forest and nature.  The session with Isa and Kathleen reinforced the importance of maintaining a sense of self or identity at all stages of life, including dementia. Back in the UK, Grayson Perry’s programmes about identity, which included one on Alzheimer’s disease, reinforced my view of ‘identity’ being something which is multiple and shifting throughout our lives; our past informs our present identity. To me, Kathleen was the person in front, not behind, the memory loss. She was full of vitality and interest in the present moment. Whilst hearing about her emotional connection with the Garry oak, as well as her memories of the Scottish woods and highland, I was reminded of my visit to the Museum of Anthropology in Vancouver which exhibits many aspects of First Canadian history with past and present use of wood and natural fibres.

The session with Kathleen also reminded me of the privileged role of the writer or artist working so closely with individuals with dementia who are able to be so honest and forthcoming about their emotions, a reminder of the responsibility to respect and communicate those words to wider family or community, a reminder of the importance of relationships between those people working and caring for people with dementia.

Museum of Anthropology. Vancouver

Museum of Anthropology.
Vancouver

There is often an assumption that using creative writing with older people with dementia will automatically lead to reminiscence. I shy away from those stereotypes, allowing people to drift in and out of the past as they need to, in the same way I would lead any creative writing workshop. Isa and Kathleen demonstrated how their writing together drifts in and out of the past, capturing emotional responses to the present moment and the natural worlds around them. Close connections which enable people with dementia to express their views about their daily lives which can be replicated here in the UK.

Sometimes we meet people, albeit fleetingly, who stay with us because they have taught us something about how to live.  From Kathleen,  I re-learned about honesty and integrity in being ourselves, to live a life where we feel able to share our emotions, to allow ourselves to fully experience life in all its joys and worries, not to shy away from the troublesome sadness’s; they make us who we are. Growing older,  losing loved ones, losing one’s memory, they all  bring some sadness, as well as happy memories and a sense of pride and fulfilment. It is the full spectrum of these emotions that the writer, the listener, the reader, the care staff need to honour.

Kathleen: writer, poet, traveller, teacher, nature lover, mother, Scottish dancer.

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Stories from the West Side-Chapter 3

Sylvie

Although I didn’t have the chance to meet Sylvia, I got to know her through her story and her painting which was displayed at the ‘Celebration of Creativity’ held at Ferry Buildings Gallery, West Vancouver. This three week exhibition highlighted artworks produced by people living with dementia collected over ten years through the Society for the Arts in Dementia Care.    Sylvie  had been an artist and taught others as well as creating her own visual art. Dementia had stopped her participating in many of her favourite activities and she had lost a lot of confidence. But through a programme of creativity, she started to paint again in her eighties. Although she had died prior to the exhibition, her voice was strongly evident both through her paintings and her comments displayed in the exhibition.

You converted me from someone who did not want to participate to someone who is looking forward to each activity. ’

The pictures of her as a teacher in her art room in 1980s showed a vibrant and enthusiastic woman in an artist’s smock; later photos showed her working with an artist as she rediscovered painting during her dementia years. When asked how she felt about the arts activity, she replied

‘You have given me freedom and it tastes so good.’

It was this last statement which stuck with me long after I had left the building.

Ferry Buildings Gallery, West Vancouver

Ferry Buildings Gallery,
West Vancouver

During my own creative writing workshops with people with dementia, the subject of freedom has been voiced repeatedly. Participants expressing fear that they are losing their freedom, their independence and their own homes; the prospect of moving into a care facility being seen as a kind of imprisonment. So I was particularly interested that Sylvia had found ‘freedom’ in painting, this reinforced the need for programmes of creative expression so that that liberty can be experienced in many forms.  This aspect of the exhibition also reinforced the possibility of using visual arts alongside conversation, collecting words as part of the activity.

As well as the exhibition of art works at the Ferry Buildings Gallery, there were several key note speakers who shared their knowledge and expertise. Through my own work, I know the impact of providing a creative activity, people becoming invigorated during my creative writing sessions. However it was through these professionals that I heard more about evidence from scientists, practitioners and new ways of working or collaborating with other artists.  Dalia Gottlieb–Tanaka gave a stimulating talk about the benefits of creativity and ageing with quote from research.

‘Nonpharmacalogical therapies emerge as a useful, versatile and potentially cost effective approach to improve outcomes and quality of life in Alzheimer’s disease and relate disorders for both the person with dementia and caregiver.’  (International study including Dr Howard Feldman UBC)

Vancouver is a fabulous friendly city with several watery inlets along the coastal side of residential and business areas, pine clad mountains forming the backdrop from every point of the city. I took advantage of the vibrant cultural life while I was there and was delighted to

Sylvie's words and pictures

Sylvie’s words and pictures

see a Douglas Coupland exhibition of his ideas about the ‘twenty first century brain’ through Lego installation, his five thousand objects, collages and paintings.  It was if the city itself reinforced all I that I was learning about the ‘twenty first century brain’ at the Ferry Buildings Gallery, that for ages and stages of life     ‘Creativity is a social and psychological need’.

What was the difference between the creations of people with dementia and the ‘high art’ of Douglas Coupland? Who decides? Why do we ignore the contribution that people with dementia can make to cultural life of their community?  In my attempt find an answer, I put some photos on my travel blog asking readers to identify which were paintings by Douglas Coupland, which were those by people with dementia. We all agreed it was difficult to tell!

Speakers at the Ferry Buildings included art therapist Caroline Edasis who spoke about art therapy as a change agent within dementia care communities. She demonstrated the theory with several examples of projects using paint, material, slow time animation, writing plays, poetry and memoir, working with people in a dementia care facility.

‘Art can function as a transformative agent. The very act of creativity serves to       challenge notions of disability, helplessness and dependence. 

Shelley Klammer, counsellor and therapeutic art facilitator, described a programme of arts activities for veterans in dementia care where paintings, weavings and other artistic creations are sold in the community shop, maintaining a feeling usefulness and production.

Whilst in Vancouver I also met with Judith Marcuse, from Art for Social Change, where older people had been asked to represent how they felt about ageing in whatever form they chose. The subsequent exhibition celebrated the diversity of experiences from fears about loss of independence to worries about loss of a good sex life.  The range of submissions was huge and covered a whole spectrum of artistic and literary forms, each one demanding we change attitudes to ageing and older people.

At another event during my study visit, in a different city in neighboroughing USA, I attended a conference focussing on Creative Engagement with People with Memory Loss.  The same messages were being conveyed there, in Racine, Wisconsin, through practitioners working in museums and care services who were meeting at the SPARK! event for a programme of workshops, talks, discussions. I was amazed to hear how Ellie Nocum (Luther Manor Care) uses visual art to teach people with dementia about the brain. By projecting an image of the Alzheimer brain onto a canvas for them to paint with their own choice of colour and brushes: people with dementia learning about their own physiology whilst learning about painting.

There is so much that can be done with the skills and creativity of artists, writers, musicians, dancers to improve the lives of people with dementia here in the UK, it is a wonder that it is seen as something superfluous to care, rather than an essential aspect.  Why are we not training arts graduates to work in this field?

Although my focus was primarily about using creative writing with people with dementia, the comments and conversations exhibited alongside the paintings at the Ferry Buildings Gallery showed me how to bring together words and visual art. Written comments that reflect the fragmentary nature of dementia, methods of working which I could replicate here in the UK with little cost, just a change of attitude within the structures of policy makers and service providers.

Sylvia’s legacy was more than just her painting and her teaching, it was also her sense of freedom that shines through her long years living with Alzheimer’s. I also found her via the internet at the Vancouver Guild of Artists, beautiful work that she had produced in response to her love of travel, her use of different materials creating abstract natural landscapes. Her obituary stated that her recommendation for a successful life were three essentials: creativity, spirituality and a love of cats.

Another of her statements reminds us  ‘You have to have guts to take risks.’

Sylvia crossed the boundary between professional artist to creative participant with dementia, still able to demonstrate her true spirit and love of life.

Sylvia: artist, teacher, traveller, spiritual guide.

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Stories from the West Side- Chapter 2

Angie

‘We love Angie because she always said YES.’

‘Do you want to do some street theatre, Angie? YES.’

‘Do you want a visit from a writer to become a poet, Angie? YES.’

‘Do you want to learn something new, Angie? YES’

These are lines from a ten minute play performed hourly by three actors, as part of Islands of Milwaukee (IOM) weekend exhibition. Angie was one of the older people who had been involved in the two year project which included a visit from a writer and artist. She had written a poem about a ‘Stroker’ (great name for someone who has had a stroke) and shared her enthusiasm to try anything new, especially painting, if only she could get out of the house.

For the past two years, Anne Basting and colleagues have been concerned about the number of local older people living alone and isolated. The IOM project was developed by a team that….

‘…sought to engage older people living alone or under–connected in their communities. Using playful Questions of the Day we invited folks to share their thoughts, write poems, create stories, sing songs and dance and to connect to each other and their communities at large. ‘

Cards with Questions of the Day were delivered to isolated older people through meals on wheels drivers and home care providers during the two year process. In response, many older people commented that they were unable to get across the road because the traffic lights changed too quickly. IOM took this as a key issue that needed to be changed in order to keep people connected. So they invited the Mayor to three street theatre performances at traffic crossings, involving older people, actors and community members.  Angie was actively involved in showing just how difficult it was to get across the traffic lights with a walking aid – and young parents found it just as difficult with toddlers and pushchairs.   As a result, the timings of some of the traffic lights were changed.

Milwaukee (Native American name for ‘gathering by the water’) sits on the edge of Lake Michigan but is perhaps best known to  British TV viewers for the series Happy Days and the original manufacturing site of Harley Davidson motorbikes.  On Sept 20/21, Milwaukee  had an ‘Open Doors’ weekend when all the historic buildings were open for the public to visit, including the famous City Hall with its central space open to the eight floors above, lined with beautiful wooden balustrade and iron railings.  The IOM exhibition and performance at Milwaukee City Hall invited the general public (and a couple of Winston Churchill Fellows from UK!!) to meet and engage  with the project and to consider ‘How will I stay connected to community as I age, how can I be part of creating a more connected community for others?’

Sojourn Theatre performed the ten minute play every hour, capturing the concerns of older people they had contacted, performing songs, words and dance of four individuals, including Angie. At the end of each performance, a shower of white cards fluttered down from the eighth floor, each one repeating a Question of the Day which had gone out to older people living alone.

As a volunteer ‘docent’, I had the job of inviting members of the public to write responses to the questions on the cards, which were then hung on  ‘washing lines’ next to information boards fixed on the balustrade above the performance and installation. Many of the questions were about barriers to being involved in their community.  ‘What is the well-worn path outside your door?’ was the question that I asked various members of the public as the performance finished.

I’m afraid to walk outside my door because I fear I will be attacked. A girl was shot near my house just recently.’

Some of the older people involved came along to City Hall during the weekend event and performed a song or a poem, including Angie who read her poem.

Angie reading poetry with Gary Glazner at the Islands of Milwaukee event

Angie reading poetry with Gary Glazner at the Islands of Milwaukee event

A small, enthralled audience gathered round as New York poet Gary Glazner (more about him shortly) performed Angie’s poem with her, using his ‘Call and Response’ technique of echoing each line of her poetry.

The Islands of Milwaukee project, where the process is as important as the outcome, is a fantastic example of using creative writing and other art forms when consulting with older people about their neighbourhood and the development of Dementia Friendly Communities. Small changes can have a big impact on individuals, where friendliness and understanding comes at a very small price, where the written words become both performance and policy changing. Involving older people in performance and creativity also challenges stereotypes about older people, especially those with dementia,  and their ability to contribute to the cultural life of their community.

One successful outcome from the IOM project was the innovative, ongoing partnership across all the organisations involved. This resulted in changes in services as the delivery drivers interacted more with their clients when they distribute the meals on wheels; the care assistants had a new topic of conversation every time they took in a ‘Question of the Day’. Older people were seen as having opinions and involvement in decision-making, not just recipients of care; their sense of self being strengthened each time they shared their thoughts and views.  The financial cost of this kind of project can be offset by healthier and happier individuals who are less isolated.  One of the statements in the play was ‘Social isolation is the equivalent of fifteen cigarettes a day. That’s a lot of cigarettes’. We all know the impact of cigarettes on health and subsequent health services.

Angie did go on to learn painting and her artwork was seen by thousands on Twitter. She continues to speak out about changes needed to make it easier for people with mobility difficulties to get out and about, reminding us that small changes can make a big difference.

Angie: poet, painter, campaigner, performer.

Islands of Milwaukee installation

Islands of Milwaukee installation

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Stories from the West Side- Chapter 1

Robert.

‘I was in England in 1946. Met French, Russian and British soldiers there. ’

He tells me this eight times in the next thirty minutes, fidgeting in his seat beside me, hands restless, eyes on mine.

‘I’m Romi, here on a study visit from England.’

‘I was in England. In 1946. Met French, Russian and British soldiers there. ’

‘Well’ I reply, ‘you will know of Winston Churchill. ‘

He nods, he is interested, we have a connection. He leans across to hear me better as I carry on.

‘When Churchill died, a fund was set up in his memory; its motto is Travel to Learn, Return to Inspire. That’s why I’m here in Milwaukee, to learn more about how you do writing and storytelling so that I can tell the folks back home.’

This morning’s Timeslips storytelling session is about begin; fifteen older people and two staff in a circle at a day care centre where most of the participants are at some stage of dementia.  I know a bit about Timeslips, I’ve done the on-line training programme. As a writer working with people with dementia, I’m keen to see how the process works in practice here in Milwaukee, hometown of Anne Basting, creator of Timeslips, and training coordinator Joan Williamson.

When each person is asked to introduce themselves to the group, Robert tells us this is new to him, his wife just died, he doesn’t want to be here, he doesn’t want to be anywhere. There is a silence as we acknowledge both his honesty and his grief; it is a challenge to know how to deal with raw emotion in a group setting.  One of the facilitators acknowledges his loss, tells him that his daughter brought him this morning, that he will be going home after lunch. But right now, we are going to create a story.

The two staff have specific roles- one as the group facilitator and the other to write up the story as it develops onto a flipchart; they hand out copies of the same picture to each participant. The group is going to create a story from this picture and see their words written up on the flipchart.

‘What is going on here?’ asks the facilitator.

Good question, I think, as I look closely at the black and white picture of a 1950s French Gendarme talking to two small boys dressed as aliens, yes aliens, each pointing a gun at the Gendarme while he writes something in his notebook.  I turn to Robert, he is mystified as he looks at the picture, so am I.

‘What’s going on in this picture?’ repeats the facilitator, followed by other prompts, as gradually the group creates a story.  There is skill involved in managing the responses from every individual in the group, every word gets written up, even when there are conflicting views.

‘What are the ages of the two boys in the picture?’

‘About nine.’ says one person.

‘Seventy two.’ says another.

This all goes on the flipchart, with names to remind the group who said what. During the session, the facilitator at the flipchart reads back the story so that everyone is kept up to date as it develops.

‘The boys are aliens, they are in France.  They have come to earth to take this French policeman back to Mars as an example of the human species. The aliens have water pistols. All this talk about water makes us want to go to the bathroom.’

Sitting next to me, Robert is really laughing at that, shouting out his comments too.

‘They are in France. I met French soldiers when I was in England in 1946.’

After about forty five minutes, everybody has said something about the story, their words are on the flipchart.  Then the facilitator asks

‘How do we end the story?’

There is silence for a few minutes, I wonder if the facilitator should intervene, but we rest with the stillness until one man stumbles to find the words, then he says

‘They went back to Mars. Sadder but wiser.’

Perfect ending.  The whole story gets read out one more time; this will be written up, posted on the wall for everyone to read, perhaps brought together with others for a storytelling session with family and friends. Robert is smiling as we all give a round of applause to the whole group.

Anne Basting, author of Forget Memory, designed Timeslips in order to give people with dementia the role of ‘storyteller’ to express who they are- ‘a way to be something other than a sick person.’  She based this on the key concepts that everyone has the capacity for creativity, that people with dementia can learn, there is equal emphasis on the product (story)and the relationships/emotions at play in the process of storytelling; Timeslips has no wrong answers. At a time when most of their social roles have diminished due to memory loss and other limitations that come with dementia, Timeslips can help staff and relatives to see the person as they are now, to be creative with them even if only for a few moments.

There is half an hour to fill before lunch and the staff facilitate an impromptu exercise session with the same calm skill they have used with the storytelling. In each pair, one person makes a movement and the other copies. Robert gets into this straight away, he is the leader, he is in charge- he lifts his right arm up, I copy; he turns to the left, I copy. And so on, until he gets bored and says to me

‘Let’s dance.  I’ve danced since I was three years old. I love to dance.’

He puts an arm around my waist and begins to waltz me round the floor. In just one hour, through participation in Timeslips, he is transformed from sad and lonely to dancing, smiling and talking.

What would it take to run Timeslips sessions in every dementia care setting in the UK?  A few hours on-line staff training, a change in attitude, a willingness to try something new, take risks. Mostly it takes a commitment to prioritize relationships to the same extent as physical care tasks and the belief that older people with dementia are capable of being creative storytellers.  It requires trust that we can all be creative, it takes knowledge, borne out in scientific evidence, that creative activity can bring about calm, that it has a purpose.  Creativity shows us who we are, reveals aspects of our personal identity which is so important to all of us, especially those in dementia care.

As I get ready to leave the room, I notice Robert dancing the tango with a member of staff; other people are talking, moving about and admiring the artwork on the walls. I watch Robert twirling around the room, his face alight with a smile, living in the moment, dancing in the moment.

Robert: storyteller, dancer, father, widower, soldier

Milwaukee, lakeside city

Milwaukee, city by the lake

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