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07-15 November 2020

I’ll be Here in the Morning: Celebrating Our Community of Care

The Sustainable Care Programme is proud to present our exhibition I’ll be Here in the Morning, highlighting the many and varied experiences of caring in 2020. One result of the upheaval and turmoil of the coronavirus pandemic has been a new focus on the lives of unpaid carers and people who use or require support.

The exhibition will take you on a journey through these lives, offering a view – through photographs, artwork, stories, poems and recipes – of the everyday experiences of those who are so often invisible in our society.

Our work in the Sustainable Care research programme looks at how, as a society, we approach the care and support needs of adults living at home with health problems or disabilities and those who support them. Our studies indicate that ‘sustainable care’ can only be achieved with a more even distribution of the work, responsibilities, and rewards of care, and when all generations and communities have a voice in decisions about care. Together, we can create care-friendly homes, living environments and workplaces, and see caring for each other, and empowering older and
disabled people, as vital achievements – and not just costs – for our society.

In this very special exhibition, we have tried to indicate how the experiences revealed in the exhibits resonate with some of our research findings on care and caring. We invite you to pause and reflect on how these images of care also speak to you.

Please note: the images and commentary address sensitive subjects that some viewers may find upsetting.

Social Distancing

I’m Co-Chair of the Staff Parents & Carers network over at Hallam Uni, I’m also a carer myself for my 91-year old Grandad.

I’ve looked after him through lockdown and this photo was one of his first trips outside when he was no longer shielding. The cat is a really old stray that Grandad adopted and they’re never far apart from each other!

Emma, Sheffield UK

Tropical Bliss: A Limbited Edition

Vienna is 12 years old and has recently had her right hand amputated following a serious accident.  She is currently recovering at Great Ormond Street Hospital. Being right hand dominant she is having to make a lot of adjustments. Throughout such a traumatic experience she has remained so strong and positive. Her artwork is the result of an art class via zoom run by the play specialists at GOSH. This has not only been amazing for her physical strength and rehabilitation but also her emotional well being and recovery. 

The artwork submitted was done with her non-dominant hand and we think it demonstrates the hope of a brighter future for Vienna which makes us very proud. 

She is hoping to continue to paint in the future and has entitled this ‘Tropical Bliss’ – A Limbited Edition 💕 Vienna hopes that her painting will inspire others to have the strength to overcome any difficulties they may be facing.

Vienna, Sharnbrook UK

Joan

Emma, Devon UK

Helter Skelter

This is the photo of my oil painting done in lock down of how I was feeling.

Julie Anthony, Sheffield UK

Duty of Care

Chanelle, Eastbourne UK

The Carer Behind the Door

Debra, Leicester UK

Ebb and Flow

I’m a carer for two people, my father with Dementia and Parkinsons and my husband with Aspergers. I spent my working life in Education and stopped work to care for my family. 

I stumbled across art when gifted a water colour set, I have explored from there and am self taught.

I find it give me a focus for self care, a sense of achievement and an escape from the overwhelming experience of being a carer.

My work is mixed media abstract and inspired by the beach and organic natural beach finds. I work in ink, paper making, resin, acrylic and watercolour with a little macrame thrown in for good measure.

This is a great idea, you become invisible as a carer and it’s nice to have something to participate in.

Sarah Galloway, West Sussex UK

A Series by Rachel Hankinson

Rachel Hankinson, Sheffield UK

Laal-shaaker-er tok

For this entry, I am sending a local, indigenous recipe called ‘laal-shaaker-er tok’ (Amaranth leaf dish cooked in a tart flavour) that is native to my father’s hometown in Midapore, West Bengal, India. 

The tart flavour in this leaf-based dish is achieved by incorporating dried black mango pieces (locally known as aamshi) or tamarind. This lesser known recipe may not be well-recognized in the homogenised culinary tradition of Bengali cuisine that is projected, sustained and reproduced through the various mediums of popular culture, however for me this stokes the image of my father lovingly preparing it for me in the kitchen and along with it narrating anecdotes from his childhood. As someone who lost her mother at a tender age, my father ensured that I do not feel her absence and one of the ways he ensured that was to cook for me occasionally and introduce me to these local recipes interweaved with love, warmth and care that strengthens the father-daughter bond.

Cooking, sharing culinary techniques, feeding and eating together forms an important entry point of understanding intergenerational exchange.

Sayendri, UK

Untitled

My 80-years old father caught the covid-19. He was hospitalized on March, 22, and spent two months in ICU, fighting for his life. Visits were not allowed, so sending him drawings and pictures was one of the only ways we could support him and send him our love and encouragements, especially when he was too weak to see us on Skype. This was particularly important to his grandchildren, whom he loved immensely.

We sent him these two drawings when he was still in a coma, hoping he would see them when he would eventually wake up, and find strength in them to cope with the terrible pain and discomfort he was going through.
The first drawing (the heart) was made by my 11 years-old daughter Naomi. She painted the sheet of paper, and glued little hearts on the sheet into a larger heart shape.

The second drawing was done by Naomi and my 12 years-old son Gianni – Gianni suffers from dyspraxia and is not very good at drawing, so he chose stickers and arranged them on the sheet, and Naomi drew the rose. I also contributed with small drawings (like the heart), and we all signed it (me, my partner, and our two children).

The nurses put the drawings on the walls of my fathers’ room in ICU, right in front of his bed, so he could see them without efforts.

Daddy woke up from his coma in mid-April, and we realized that seeing those drawings was of great importance to him, as he was so deeply attached to his grandchildren. One nurse told us that he was clearly fighting for them.

Sadly, he passed away on May, 22, in the ICU unit. I was allowed to hold his hand as he was going away.

I hope the quality of the pictures is not too bad… But this is an opportunity to acknowledge the caring roles that children play in our lives.

ANONYMOUS

Coronavirus

I have written a short poem about my experiences. I cared for my husband from 2010 onwards, until he was admitted to a care home in 2018. He died in Northern General Hospital in April from Coronavirus.

ANONYMOUS

Kintsugi Me

I’m a carer for my brother who is living with an untreatable brain tumour. The philosophy behind Kintsugi resonates with me – I love the idea that flaws and imperfections are embraced. Honouring these ‘cracks’ and highlighting them, rather than attempting to hide them away, is, to me, an acknowledgement that our experiences make us who we are. Sometimes, the worst of experiences help us to discover wonderful things.

Jenny Jones, Sheffield UK

Befriending

Frances, Sheffield UK

All Key Workers

The drawings are based on my interviews with my participants, for my PhD research project based on carers, that I’m still currently completing. In this project, I look at how carers combine their care responsibilities for their family relatives or friends with their daily, paid job. The aim was to understand how their day jobs impacted on their experiences of care, their health, wellbeing, financial resources, time, etc, and whether they received any kind of support, from their co-workers, line managers, their relatives, etc.  I conducted three case studies of organisations in the UK who recognize some of their employees as “working carers” and I recruited my participants with their support. 

Some stories were very emotional and intense. My participants always seemed on the rush, isolated, trying to “fit in” in their work lives, alongside the massive care responsibilities they had and they struggled to share or make people understand what it was for them, to juggle both- something I wanted to try and recreate in the drawings. I did the drawings myself, but they were not part of the official research outputs. I just thought it would be a nice way to make my participants’ stories more visible and more accessible than in an academic article that only very few people will read. I’m not at all a professional artist, but I always enjoyed reading graphic novels and drawing cartoons, so here it is. And I think drawing is also a nice way to process things and release  stress and tensions, especially during a PhD.

ANONYMOUS

Dementia: a living bereavement

Dementia is like a living bereavement. But documenting it through photography has given me a focus and enabled me to share the story about what dementia can be like not only for the person living with it, but the family around them.

I’m currently documenting (with permission) my family’s journey looking after someone living with dementia to show the isolation that can often be felt by carers (in this case, my Mum, again, with permission) and the physical decline of my step-dad (Hands, pictured, with permission). We both look after my step-dad as carers – my Mum full-time, and me as a visitor to give her respite. 

Richard’s speech was one of the first things to go – he was unable to speak very early on in his mixed dementia diagnosis. However apart from that you might not know he was living with dementia. It’s often a hidden disability. But in the later stages it becomes more obvious physically, and Richard’s hands became something I’d notice each time I visited when giving my Mum respite. They became thinner, fragile and bruised. It’s also well known that people living with dementia can have restless hands – and that’s certainly the case with Richard. So they became a focal point for me documenting his decline. 

Marge Bradshaw Photography, Bolton UK

Yesterday’s Hammer

Carolyn, Whipsnade UK

Desperate for a Cuddle

The first photograph is of myself and my little boy and my dear mum seeing each other for the first time in 4 months through a window at her care home. The second photo is of myself and my mum seeing each other in a gazebo in the gardens of the care home, separated by a protective screen. 

My mum suffered a severe stroke last year which has sadly impacted her physically and brought on the complex disease of early dementia. She went into care during lockdown & it’s now been 8 long months since I’ve been able to see her properly. The care she receives is wonderful, I am in complete gratitude to the dedicated staff that now look after and care for her in a way I simply couldn’t. 

Visits are restricted (understandably) to protect the vulnerable residents but boy, do I long for a cuddle with my mum and I just hope I get one before it’s all too late.

Martha, Sheffield UK 

Out Trekking

I was out every day walking doing a sponsored walk for Bradford live at home.

Jeanette Mullaney, Bradford UK

Picking myself up

ANONYMOUS

Do you see me?

I wish to submit my drawing of my mother whom I care for.

Xylia, Rotherham UK

Secret Tears

I’m not much of an artist but here is my pencil representation of the secret tears and fears I cry about everyday being an unpaid carer to my husband and a mum to 2 children.

Lockdown has not been the easiest to say the least.

Kirsty, March UK

Coronavirus: a poem by Kathleen Brown, Age 89

Poem received from an 89 year old lady, we (care home) look after her friend and she dedicated this to my staff for all their hard work and dedication to our residents.

Care Home Worker, UK

Roland in his chair, in mask and his pads

Shirley Cameron, Sheffield UK

Caring Comes Softly

Carole, Manchester UK

Single Mum Who Cares for 2

Joanne, Manchester

Reflections from Researchers

Dr. Erin Maglaque, Lecturer in Early Modern European History

One of the things I’m really interested in with my research is de-sentimentalizing care – showing that care work can be fraught, messy, even conflictual. I really like Kintsugi Me because I think it captures something about the way that these ‘flaws’ are actually intrinsic to the experience of both giving and receiving care. Exposing or celebrating such ‘flaws’ can be more powerful than creating a single, uniform narrative of care that emphasizes selflessness, etc. to the exclusion of more complicated emotions.

Dr Karla Zimpel-Leal, UKRI Innovation Fellow

The UK has a care workforce of more than 1.5 million people, with 685,000 in homecare jobs (Skills for Care, 2019). The COVID-19 pandemic brought care to the forefront attention of the British public and highlighted its immense value as well as its fragility. As these evocative art submissions revealed, the ramifications for carers, families and social life have been extensive. “Duty of Care” is a photographic representation of what many care workers endure every day, the pain of the upside-down giraffe that comes from low-pay, the lack job security, poor recognition and social and economic wellbeing. Many care workers experience burn-out and feel unsupported in their roles and a large proportion of carers feel financially insecure. However, care workers are highly skilled and resilient, with the majority enjoying their work, finding it fulfilling to help people (NACAS, 2019), as expressed by the note in the photograph.

References:

Dr Matthew Lariviere, UKRI Innovation Fellow

I’ll be here in the morning represents an opportunity for carers and the care workforce to portray what caring means to them. The creation of this exhibition and many of its submissions almost inevitably frame care in the context of the ongoing Covid-19 pandemic. Covid-19 has brought narratives of caring and our care systems to the fore of public discourse. We clapped for carers during the national lockdown. We debated limited access to PPE and its consequences on vulnerable populations living in the community and institutions. We felt constrained and confined to our homes. We became isolated within our households at times creating generational silos between children, parents and grandparents.

I’ll be here in the morning reminds me what I feel is a central tension in our understanding of care. That care is at the same time ubiquitous and mundane, yet extraordinary and complex. We may take for granted everyday acts of caring – making dinner for your partner, bathing children before tucking them into bed, calling your grandparents to see how their bulbs are growing in the spring. We may not identify these actions as forms of caring, but as everyday acts tied to our relationships. “I’m not providing care when I make dinner. I always make dinner in my family”, we might tell ourselves. I argue that relationships define who we care for and how we care for them. These relationships may be based on kinship ties (e.g. daughter, father, grandmother) or in relationships framed by professional obligations (e.g. nurses, medics, and care workers). In either case, caring is necessarily embedded within our relationships. They structure expectations for our roles and acts of caring. In other words, care is relational.

When I look at the collected illustrations, paintings, photographs and poems constituting I’ll be here in the morning, I interpret these evocative depictions as reinforcing the principle of care as relational. Even when a photograph or illustration portrays only an individual, I sense the relationship behind the image. This person is important to the artist. The artwork feels imbued with a sense, if only a glimmer, of the personal meaning behind the subject of the piece. It hints at the significance of their relationship in the materialities of their everyday life or, indeed, death as in the affecting poem “Death in a pandemic”.

During these times of heightened uncertainty for the wellbeing of our loved ones, we can take solace through the ways we care. Caring for people closest to us allows us to comfort people we care about and be comforted in return during this difficult time. As Neil Gaiman wrote:

“When we hold each other, in the darkness, it doesn’t make the darkness go away. The bad things are still out there. The nightmares still walking. When we hold each other we feel not safe, but better. ‘It’s all right’ we whisper, ‘I’m here, I love you.’ and we lie: ‘I’ll never leave you.’ For just a moment or two the darkness doesn’t seem so bad.”

Gaiman, N. 1999. Neil Gaiman’s Midnight Days. Titan Books: London

We may not know when the darkness of Covid-19 overshadowing our lives will give way. But we can look to our relationships with one another as beacons of care, comfort and support.

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