Updated: Jul 17, 2019
I love water. I’m what you might call a water baby! The thought that if I were to develop dementia I might develop an antipathy to water gives me pause for thought this summer as I’ve been reading Elizabeth Miller’s collection of poems Penumbra: Poems about dementia, and her poem ‘Water resistant’ in particular.
Elizabeth is a teacher and poet whose mother was diagnosed with dementia in 2013. She muses on where her mother might go in her dreams and expresses her frustration at a medical profession bound by strict time limits on medical appointments – eyes ‘flicked up to the clock’.
Her resulting poetry came to the attention of Anna Chaplaincy lead for Rochester and Canterbury Dioceses and dementia specialist, Julia Burton-Jones. Julia told me how earlier this year, Elizabeth, a poet in Weald Parish in Kent, came to her with ‘a collection of wonderful poems she had written about her mother’s dementia. We worked together on plans for her to self-publish an anthology which she entitled Penumbra: Poems about dementia. The collection carries the Rochester Anna Chaplaincy logo and I wrote the Foreword.’
‘This provided an opportunity to work together on an event for carers of people with dementia, held in partnership with our retreat centre, St Benedict’s in West Malling, on 1 July 2019. We hope this will become a regular event and would also like to offer retreats for bereaved carers and quiet days which the carer and cared-for person can attend together.’
The poem which spoke to me so vividly, ‘Water resistant’ tells of how Elizabeth’s mother had always been a keen swimmer:
Mother told us, many times,
How she learned to swim
In the River Avon,
Icy cold even in summer
Chilling but thrilling.
And seaside trips
Demanded several swims
Hobbling over pebbles,
Through the shallows
To splash over surf
And out of her depth
Where she loved to be.
But as confusion grew so did a new-found reluctance to go anywhere near water whether to drink it, or to swim in it…
So now it seems strange to see
Her fervently avoiding water,
Resisting baths or showers,
As if she is no longer waterproof
And fears she might become
Nothing but mushy pulp
Like tissue remnants from the wash.
This poem, like every other in this intensely personal collection, is followed by a prose reflection on how the poem came to be. It also suggests what a cathartic effect the creative process has had for a family struggling to make sense of a diagnosis and journey into memory loss, which leaves not just the person living with dementia reeling but those closest, too, amid the daily struggles to keep communication going.
‘There is a paradox central to this poem,’ Elizabeth writes, ‘of how my mother’s love of water mutated into a fear of it. The sharp contrast between these emotions highlights how dementia can appear to rob a person of aspects of their personality that used to be so fundamental.’
But whether it is her mother’s resistance to water, her growing incapacity to maintain her customary personal hygiene, or an inability to feel thirsty as time goes on, Elizabeth’s poems serve the function of helping her come to terms with the disease.
‘Poetry has continued to pour out of me,’ she writes. ‘I have told friends that it is as if God had turned on a power shower and left it running! At times, it has been clear to me that he is using me as a channel; I feel compelled to share this gifting and do so generously, in love. If I can help someone who has struggled as I have, if I can walk alongside someone to show them that they are not alone in their difficulties, then this will make all the effort worthwhile.’
For Julia Burton-Jones, poetry lends itself to the exploration of the condition. ‘There is much about the experience of dementia that remains a mystery. We cannot know what is happening in the mind of a person in the later stages. This makes poetry an ideal medium for expressing the lived reality, hinting at what might be happening and using metaphor to explain what is observed, while striving to maintain connection with the person.’
To obtain a copy of Penumbra, email firstname.lastname@example.org