Dementia is the umbrella term for a range of conditions including Alzheimers’ disease which mostly, though not exclusively, affect people over the age of 65. Symptoms include memory loss – which begins as short term memory loss and then long term as the disease progresses – difficulties with communication, coordination, mobility and executive functioning, changes in personality and hallucinations. 1 in 14 people over the age of 65 have dementia. It is progressive. There is no cure.
I recently attended a panel discussion, Making Up Memories, at the Southbank Centre. One of the panelists was the filmmaker Lotje Sodderland, who experienced a brain haemorrhage aged just 34 due to a vascular abnormality present before birth (her Netflix documentary, My Beautiful Broken Brain, chronicles her life post-stroke). Now largely recovered, Sodderland mentioned that she still does not watch television or read much as she finds plots overwhelming. People with dementia, too, can struggle with following linear narratives. Perhaps poetry, which picks out the essence of a life story rather than laying out a chronological narrative, is a more appropriate expressive medium for people with dementia.
This is the view maintained by the poet John Killick, author of the groundbreaking book You are Words. Each poem in the volume is comprised entirely of words spoken by somebody living with dementia. The results are startling, disorientating and sometimes heartbreaking poems which both express the often frustrating present day realities of the people with dementia as well as drawing upon fragmented past memories:
‘Have you seen my barrow?
I joined the group,
and now it belongs to all of us.
But I don’t know where it’s gone.’
This summarises, in four lines, the essence of what it’s like to go into residential care; although you might not literally have to surrender your possessions, something deeply personal is lost as you become another name on the list.
We don’t remember days, we remember moments. Who was it who said that? It has a ring of truth, and perhaps especially for those living with dementia. A merit of the poems in Killick’s book is that that capture this ‘momentariness’ – the fleeting images, emotions and sounds that make up memories – without striving to fill in the gaps:
‘There have been other loves
but none like that of my mother.
She had birds that came onto her hand,
pecked, and flew away.’
The results are disjointed and not always satisfying – these aren’t poems which are going to win the Forward prize, but that’s not the point. What the poems do is give an insight into the mindsets of those with dementia in a way that reading the first paragraph of this piece, for example, could not.
As a support worker for people with dementia, and as somebody who is interested in what poetry can do, I couldn’t not read Sarah Hesketh’s The Hard Word Box (Penned in the Margins, 2014). The book is the result of Hesketh’s Arts Council-funded 20-week residency in Lady Elsie Finney House, a care home for people with dementia.
In Hesketh’s circumstances, it might have been tempting to write poems reminiscing about the past lives of each resident, the time before their world shrunk to the four walls of the care home. This undoubtedly richer time before might have lent itself more easily to the writing. But Hesketh is acutely aware of the social and political implications of writing in this way, rather that representing the voices of the residents as they exist now:
‘When I first started working on Where the Heart Is, I thought my job would be like that of an archaeologist. That I would help people recover who they had been, and explore new ways to hang onto that. Instead, I realised what was most important, was not that Maureen used to like jazz, or that Bill had once been a butcher, but that Jack tells great jokes, Phyllis likes helping others to the table – that’s who these people are now. They are still living their lives, and those lives are what need to be represented – in art, in policy, to families. Especially if the lives people are living in care are to change for the better.’
With great sensitivity – and at points, quite a bit of anxiety – Hesketh diligently represents the voices of the residents, and in so doing gives them something powerful: the present tense. A poem about a resident named Doreen is comprised of her care plan interspersed with transcriptions of Doreen’s speech:
‘Doreen sometimes likes a [SHUT UP SHUT UP SHUT UP SHUT UP] sing-a-long.’
It might have been easier to write about Doreen if she hadn’t been so angry, confused, and inarticulate: if she’d spoken in a sweetly metaphorical way, or rhapsodised about her past. But Hesketh chooses to represent her the hard way, transcribing her angry, confused voice as it really is:
‘Doreen loves [HORRIBLE HORRIBLE HORRIBLE HORRIBLE] gardening, and was always happy when spending time in the garden.’
As with Killick, many of the poems are ‘found poems’ taken from texts (care plans, instructions) found around the care home or combined from real phrases said to her. However, as Hesketh chooses not to limit herself entirely to this method, her poems naturally have the capacity to be richer. Her imagery is unpretentious, unflinching and exact:
‘How else to explain her feet
stuffed like potatoes into a cocktail glass?’
Empathy is clearly important to Hesketh and each poem is its own struggle to get inside the mind of somebody with dementia. Again and again she demonstrates that poetry is the perfect form for accomplishing this, as it lends itself naturally to fragmentation and interruption, being unconstrained by the laws of grammar. She carefully treads the line between lucidity and total obscurity to great effect:
‘Everything is so/balled heart. Too much muscle/in the sound of thinking.’
Dementia is frightening. But Hesketh refuses to let herself be overwhelmed by fear or sentimentality. Instead she dedicates one poem in the whole volume – This Place – to her own personal fears, her awareness that dementia could also happen to her. And what a poem.
What’s more, this is a poet acutely aware of her position of power in relation to the care home residents and her corresponding responsibility to them. She is all too wary of the pitfalls of objectifying people more vulnerable than herself, of ‘using’ them for artistic purposes (think of the photojournalist Kevin Carter and his infamous ‘vulture’ photo). In the titular poem:
‘You might enjoy the ruins
of our grammar, the way we
chew up our nouns to song.
It’s not your hand that’s getting
thinner on the blanket.
Please don’t ask us to speak
the hard words all at once.’
I do think this must have been an incredibly hard book to write, not only because of the artistic challenge of representing the voices of those with dementia accurately and authentically, but also because of the demand to avoid the charge of objectification or romanticisation while also being ‘poetic’. In her introduction Hesketh recalls a member of the care staff at Lady Elsie Finney House saying: ‘Just remember us, and tell it right.’ A lesser poet might have shied away from this challenge. Instead, Hesketh has produced a book of gorgeous, sad, empathetic poems which are poetically and philosophically interesting while also being a tribute dedicated to the real people she met during her residency. As for telling it right goes, I really, really think she did.