This article was first published by Lapidus in 2014
Although I have worked with people with dementia for the last three years I am not an expert in dementia, but I do know something about people and what it is to be intimate and honest and authentic. Maybe this is why I’m a poet; maybe this is why I work with people who have struggled or who are still struggling; people who are vulnerable, ill or dying. The thread joining poetry and these areas of work for me is this intimacy and honesty. Poetry I believe, more than any other art, with the exception perhaps of music, (and they have much in common), speaks as though directly from one human being to another. It is about connection and empathy.
As an arts practitioner meeting someone with dementia for the first time, I have no idea of their past and am entirely free of expectations of them; I simply sit alongside them and listen. I think that it can be useful for people with dementia to have the opportunity to talk to people who are not from their past, who simply accept the person as they are now, often a difficult thing for family and friends. Reasoning and memory may be affected but feelings remain and the arts are concerned with feelings. I see people who may be free of an intellectual life and yet they are often entirely uninhibited. I see this as a positive thing, something to be celebrated.
The work I do was pioneered in this country by my mentor and friend John Killick, with whom I worked for a few years in a project funded by The Courtyard Theatre in Hereford in association with Ledbury Poetry Festival. Four poets were trained by John to work in care settings to sit alongside people with dementia and to simply listen. We worked both with people in groups and also one to one. Listening carefully as I chat to someone with dementia, the work involves writing down their words and shaping them into a poem which is then given back to the person on the next visit. Sometimes the words come very slowly and need to be patched together to make a narrative. Their words are used without adding or altering them in any way, although not everything is used and it may be differently ordered. With the individual’s permission these poems may then be shared further with family or with care staff, or even more widely in a book or performance. It’s often been very useful to read these poems to the care staff as this can give them an insight into the lives and experiences of people in their care that they had not the time or the opportunity to discover.
When words are hard to remember people often turn to metaphor to assist them, thus one man struggling for the word car, described them as ‘tin boxes on the road’. People are free to define their environment metaphorically and this works best as poetry rather than prose.
I must admit to having been a little sceptical about the value of this work until I saw what happens when someone’s words are returned to them; it is almost without exception a wonderful moment; You have got it just right! People are proud, share it and hold tight to the valuable thing that they have been given. The recording of their words themselves as I listen and write, is appreciated too. Someone is valuing what they have to say to such a degree, that they are even writing it down!
Not Too Sparkly
Not too sparkly, no,
not at the moment.
But I think there’s something on the horizon
quite frankly.
What’s-er-name gets these sparkly things
and talks about them
to see what they mean.
Another young woman from somewhere quite nice
not my daughter, no
and my mother isn’t very well,
so we’ve let these things go a bit.
Quite a lot of the villagers, like those there,
believe in looking after themselves,
which is quite good really.
Marjorie
Sometimes the work involves the reading of poetry on a theme to a group which might then lead to poems made in the group from their responses, either to the theme or to another prompt. In Herefordshire, for example, in one care home many of the residents had worked in the cider industry so I organised a cider tasting. As well as poem produced by the group, we got a little tipsy and had a great time. One man with very advanced dementia who had not spoken a word for months tasted the pear cider and spoke just one word ‘Pear’ and the delight of the nursing staff was a wonderful thing to see.
Weeds and Wildflowers
I used to know all the names of the flowers,
but they’re gone now.
...cowslip, daisy, dandelion...
Weeds weren’t allowed to grow in our garden,
everybody grew wallflowers.
...celandine, thistle, daisy...
Anne eats the young nettle tips,
and cooks them like spinach.
...buttercups, poppy, mare’s tail...
It comes up tall and straight,
Ground elder, you can’t get rid of that either...
...nettle, groundsel, wild strawberries...
I remember my mother
used to take me walking in the country,
we walked to school
and she collected wildflowers on the way.
...ivy, willow-herb, evening primrose.
Ivy, Ruth, Kay, Lena, Edith and Rosemary
This intimate connection, either from the words in a poem speaking as though directly to another human being, or in the other direction, the making of a new poem from the words of an individual, is all about being properly in the present moment. Even when a conversation stimulates recollection, the poet, either on the page, or holding a hand or offering up a glass of pear cider and listening to a response, the experience is here and now. So much of our habitual social interaction involves memory; if we think about the questions we use to make small talk they are often things like; Hasn’t it been cold lately? What have you been up to? How was your morning? What did you have for lunch? etc With people with dementia it is important to properly be in the moment and to be careful not to ask these questions. This is very hard to do to start with, but soon becomes second nature and frees the encounter of any anxiety on the part of the individual. This being properly present in the moment has an almost Buddhist-like quality to it, and reminds me how to be in the rest of my life and work; more accepting.
The Courtyard Project was an example of best practice for me. We four poets were mentored by John Killick and given ongoing support and encouragement once we continued the work alone. This has been invaluable. As poets, in a sense, we were being paid to be thin-skinned, to be sensitive but often the care-home or nursing home environment is a hard one to be thin-skinned in. As you might expect, I have had to cope with ill-health, distress, fear and death, and in the absence of counselling training this has often been a difficult thing for me to witness. But on the whole the work has been enormously uplifting and joyful, full of laughter, intimacy and connection.
Deborah Alma
Poems reproduced by kind permission of The Courtyard Theatre, Hereford and were published as part of their In the Pink project.