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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