Author: Dr Ayokunmi Ojebode
“Poetry is an essential safety valve of relief and release” (Dowling, 2014)
Mama I Did It Again!
Life is like a sabra of bitter-sweet,
From the liminal ebb of the amniotic traps,
To a baby’s first and final cries,
But in the tempest of sickness, the mother-son cord snaps,
Even with dementia
The brain-teaser,
That unlooses strong men’s band,
Discharges of faecal and urinary matters,
Sanction modest and privileged elites to timeless sections in dementia wards,
Even noble men and women puke like babies,
And commoners wander like toddlers,
With straps of pads to tension unprovoked leakages,
Yesterday’s memories today’s shadows,
A castle of ruined wards,
Dementia bleaks beautiful mother-son memories,
Like a taunting confessor voicing through a Cathedral’s-stained glasses,
The bizarre disease is a mix of facts and fantasies,
Leaving demented patients in abysmal dreamy wonderlands,
Can you hear me, Mama?
While the patient swims in a pool of concentrated wee,
With a frustrated relief, “Mama I did it again…”
My extensive experience within the dementia wards reveals different moving and mild stories about dementia, which I felt were worth compiling into a poetry collection. As an African creative writer and scholar, I have a rich background in African folktales and fables about the trickster tortoise, which communicates didactic lessons and values. There is always a story to tell, from the conventional structure of the dementia ward to resuming shifts, serving meals and drinks, writing observations, rota allocation and repositioning, and changing soiled bed covers and sheets to handover. Indeed, life is a story.
There is a growing interest in using arts-based interventions, especially poetry, to support the quality of life and well-being of people with dementia and their carers, e.g., Killick (2017) and Osman. et al. (2016), Windle (2020), Zeilig et. al. (2014) and Zeilig. Et al. (2018). Poetry is a unique genre that allows captivating aesthetics, brevity, ambiguity, linguistic deviance, and poetic licence. It can evoke emotional responses in readers through imagery, symbolism, language, sound, theme, rhythm, and metre. Poetry differs from prose because it is a medium for readers to ‘feel’ the pains of the person living with dementia and their carers (Zeilig, 2014). Indeed, a famous South African poet, Dowling (2015), comments that her mother and former actress, who was diagnosed with Alzheimer’s disease, taught her to craft life experiences as poems as a coping mechanism against difficult situations: “She gave me the license to write these poems of which she is the co-creator” (Dowling, 2015: 5). Thus, for the South African poet, poetry is a source of emotional release and therapy.
Poetry offers a more nuanced and practical way of relieving carers’ lived and shared trauma (Bitenc, 2017; Zeilig, 2014). Poets can offer insights into experiences of dementia and caregiving, e.g. highlighting aphasia or mute search for words, memories, and the psychosocial effects of dementia on carers (Fürholzer, 2022). Swinnen (2014) posits that poetry performances (such as Gary Glazer’s in a New York memory clinic) with individuals with dementia could create a rich and positive social and inclusive environment for improved communication and interaction. Poetry is an invigorating and inclusive art and act for older people that can help improve memory, imagination, and identity (Killick, 2017). Notably, the Alzheimer’s Society has funded diverse poetic projects ranging from shared reading to participatory poetry and poetic collections and performances in care homes, hospitals, and public settings produced by people living with dementia and their carers. Professional poets like John Killick have collaborated with many care homes and hospitals to harness the creative potentials of people with dementia, converting their fragmented words into poetry (Killick, 1997). This is possible because poetry allows us to “see the person behind the disease” (Killick, 2016).
My research and creative works build on the above existing scholarship on arts-based interventions in dementia care to advance creative poetry as a tool for therapy to enhance cognitive and social skills, quality of life and well-being of people with dementia and their carers in the UK’s racialised communities.
The poems I have selected from my ongoing poetry collection, ‘Mama I Did It Again’ and ‘Unwelcomed Couples’, exemplify my experience caring for service users with dementia in the NHS wards. Sometimes, during breaks, I have had to scribble my poetic muse on paper towels while reflecting on different encounters with people with dementia on the wards. The selected poems in this article are creative assets to make a case for the personhood and relational impulses of people with dementia and their ability to recall memories of loved ones and their affectionate feelings for co-service users despite the devastating effects of dementia. Pointedly, living with dementia does not mean the elimination but reinvention of the affected person’s personality and personhood.
The poem, ‘Mama I Did It Again,’ reveals that the human experience in life is sometimes contradictory and full of ups and downs, like the bitter-sweet taste of a sabra fruit. Beyond the oxymoron and gustatory imagery, the word ‘bitter-sweet’ is an allusion to the mixed emotions of coping with dementia and incontinence challenges. The poet exploits metaphors to emphasise the liminal and mystical bond that exists between a mother-son, even in the ‘tempest’ of an invasive neurodegenerative disease. From an extra-textual context, I was fascinated by the reality that the service user retains a solid memory and nostalgia for his mother. He evokes and balances his childhood and adulthood experiences despite his dementia condition. The poem confirms that something beautiful can come from the supposed ‘ruined castle of the minds’ of persons with dementia.
Unwelcomed Couples
Unwelcomed visit of strange love birds,
Old Romeo and Juliet,
Who trek the wards that won’t meet,
Inseparable,
Flirting with unvoiced vows,
Of worlds that won’t meet,
To the chivalrous Martian,
And the frantic Venetian,
Both seeking conquerors,
Imagine bliss and wreaths on raggedy wards,
Reclaiming old flames that won’t die,
Restraints broken,
Releasing spasms of anger and aggression,
Against encroaching eyes that tail old love birds,
Flying kicks and punches to settle old scores,
Not leaving them to themselves,
Chivalry groom carries the bride in the air,
Forgetting bloody soles and falls,
Not soul mates,
Torn apart to prevent falls,
Not knots and ties,
Old senior turns to aggressive violence,
Fighting like a wounded lion,
Whose cub has been stolen,
Nothing more trapped in holds,
Than these unwelcomed couples.
Likewise, my second poem, ‘Unwelcome Couples,’ consolidates similar themes of relational impulses, affectionate feelings and memory in persons with dementia as implied in the first poem, ‘Mama I Did It Again.’ The former poem was inspired by my poetic reflections and literary allusions and intertextuality with William Shakespeare’s classic Romeo and Juliet (1597/2015) and John Gray’s (2018) Men Are from Mars, Women Are from Venus: A Practical Guide for Improving Communication and Getting What You Want in Your Relationships. Like the surreal relationship of the feuding Montague and Capulet’s children, Romeo and Juliet, the two old love birds who mistake each other as marital partners attempt to create a beautiful but complicated romantic relationship that exceeds the confines of the dementia ward. However, in this case, the ‘chivalrous’ Martian tries to carry mid-air the ‘frantic’ Venetian, the old lady, aged and fragile. Therefore, nurses and carers try to separate them. The confused and vehement man responded by cussing, kicking, almost knocking down his partner. It was a challenging scene; thus, the health personnel had to use a mechanical restraint after several persuasions and redirections to de-escalate the entranced service user. Line 11 of the poem adopts the title ‘Old Flames’ from Anne Sherry’s Safe Passage: A Memoir in Poetry and Prose (2016), dedicated to the Alzheimer’s Society UK. In the chapter, the caregiver-poet and wife in ‘Old Flame’ describe her upsetting regrets about their marital crises before her husband’s late diagnosis of dementia. As portrayed in the famous South African Finuala Dowling’s poem “Brief Fling in the Dementia Ward,” people with dementia can relieve and revive romantic relationships and have a desire to receive and give love. Thus, nurses and carers must understand the love language, body communication and emotional needs of people with dementia.
Ayokunmi's Biography
Dr Ayokunmi Ojebode FHEA is a creative writer, lecturer and researcher with eight years of experience as a university faculty. He is an Honorary Research Fellow at the School of English, University of Nottingham.
He is also a Bank Mental Health Support Worker with Nottinghamshire Healthcare NHS Foundation Trust and has worked across different care homes and hospitals in the East Midlands. He is also a Volunteer Call Companion for the Alzheimer’s Society, looking after the well-being of people with dementia and their carers through a weekly telephone service.
Dr Ojebode has conducted extensive interdisciplinary research in Health Humanities and has a growing profile in the field of Dementia, Arts and Poetry, as highlighted in the ongoing research projects:
Poetry and caregiving for those with dementia: Using poems to improve the health and well-being of those with dementia and their carers in Global South and North.
Raising Awareness of Frontotemporal Dementia among Racialised Communities in the United Kingdom: Addressing Diagnosis and Caregiving Challenges through Stage Performance.
Works Cited
Bitenc, Rebecca. Dementia Narratives in Contemporary Literature, Life Writing, and Film, Durham theses, Durham University, 2017.
Dowling, Finuala. Notes from the Dementia Ward. Cape Town: Kwela Books, 2008.
Fürholzer, Katharina. Living oblivion: Poetic narratives of dementia and fatherhood in Pia Tafdrup’s Tarkovsky’s Horses. In Ageing Masculinities, Alzheimer’s and Dementia Narratives, edited by Hartung, Heike, Rüdiger Kunow and Matthew Sweney. London: Bloomsbury, 2022.
Killick, John. Poetry and Dementia: A Practical Guide. London: Jessica Kingsley Publishers, 2017. Lugea, Jane. “Dementia mind styles in contemporary narrative fiction.” Language and Literature. 31.2 (2022), 168–195.
Osman, Sara, Victoria Tischler and Justine Schneider. ‘Singing for the Brain’: A qualitative study exploring the health and well-being benefits of singing for people with dementia and their carers. Dementia. 15.6 (2016):1326-1339.
Wilson, Anthony. “Poetry and disobedience.” Robert Seatter’s panel discussion between Finuala Dowling, Thomas Lux, Tom Pickard and Hannah Silva on the theme of disobedience during the Aldeburgh Poetry Festival. https://anthonywilsonpoetry.com/2014/11/13/poetry-and-disobedience/ Retrieved 13 November 2024 accessed on 12 June 2024.
Killick, John. You Are Words: Dementia Poems. London: Hawker Publications, 1997.
Killick John and Charley Walker. Poetry lets you 'see the person behind the disease' says dementia poet. https://www.homecare.co.uk/news/article.cfm/id/1580822/The-arts-must-be-used-for-expression-and-communication-for-people-living-with-dementia-says-poet-John-Killick Retrieved 21 Dec 2016, accessed on 30 July 2024.
Killick, John. Poetry and Dementia: A Practical Guide. London: Jessica Kingsley Publishers, 2017.
Swinnen, Aagje. “Healing words: A study of poetry interventions in dementia care.” Dementia (London, England) vol. 15, 6 (2016): 1377-1404. doi:10.1177/1471301214560378
Windle, Gill et al. “Enhancing communication between dementia care staff and their residents: an arts-inspired intervention.” Aging & Mental Health. 24.8 (2020): 1306-1315.
Zeilig Hannah. “Gaps and spaces: Representations of dementia in contemporary British poetry.” Dementia. 13.2 (2014): 160-175.
Zeilig, Hannah, John Killick. and Chris Fox. “The participative arts for people living with a dementia: a critical review.” International Journal of Ageing and Later Life. 9.1 (2014): 7-34.
Zeilig, Hannah, Julian West, and Millie van der Byl Williams. "Co-creativity: possibilities for using the arts with people with a dementia." Quality in Ageing and Older Adults. 19.2 (2018): 135-145.