Photography: Lee Arucci 2
Introduction As a Carer, I m well aware how restrictive this can be on leaving the house, going on outings, socialising and personal horizons. But it does not restrict reflections on life and, for many, the outlet offered by creative writing. So in 2015 I suggested to Hillingdon Carers a small competition for poems by Carers about caring. This received some moving entries, so this year we have widened it to include short stories and hope you will find the results varied, amusing and perhaps inspiring for next year. And if you are thinking But how could I possibly start to write something that would interest others? I would just suggest Be yourself. Peter Musgrave. 3
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What is a carer? A carer is unpaid and provides regular support to someone else because they are ill, frail, disabled, living with a long-term condition, have a mental illness or abuse substances such as drugs and alcohol. Providing support to someone else frequently has a significant impact on the life of the carer. Carers are parents, siblings, sons, daughters, partners, spouses, friends and neighbours and are from all social and cultural backgrounds. Most importantly many carers do not realise they are carers. 5
Up Skilling I have had to become a liar and a compulsive one too Yes, you will see your mam later and Yes, she ll know what to do I am a utility service con artist, taking your identity evading call centre gatekeepers, just to sort the electricity I have learned to disable your car, in under 5 minutes To avoid THAT argument, that waits at the end of my wits I am an expert stalker, shadowing when you wander To text those reassuring words that I have finally found her I need these skills, I am on the front line, in a world can t understand The shape-shifting maze of dementia but I m here to hold your hand Sarah Smith 6
This Illness I hate this illness, It s broken my heart, too many times I ve lost count. Robbed me of my childhood with all the turmoil, disruption and hurt. I may not be the one with the diagnosis, Yet I felt the wrath of this psychosis. I hate this illness, Every relapse had us all tiptoeing on eggshells, in the hope of not saying or doing anything to push the volcano to erupt. My brother would cry and I d tried to get him to hush, hush, hush I didn t want any fuss, I couldn t take the nonsense cuss. I did not want this for her, I did not want this for me, I did not want this for him, he was just a baby. My mum, my brother and me, our family unit of three, Separated, I guess this was just meant to be. I hate this illness, It s poison, and many times I ve wondered if it will infect me. My Great Grandmother, My Mother, Please don t let it pass on to any others. Enough is enough, I wish it did not exist, but it does, So we have to deal with it, just as it is. 7
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It s not a permanent state of mind, though it feels like it consumes your life. It may be a part of you, but know you are so much more. You can still be what you want to be and still follow your dreams. Ignorant people in society may judge you but soon they ll see That mental illness can affect anyone, even you, even me! I hate this illness, So controlling, so abrupt, Breaks in to life like a burglar, Steals that ray of sunshine, orange and bright, Trading it, downgrading it with grey clouds, Pouring out rain mixed with pain. Never knowing when the forecast will change, So make sure you walk with an umbrella, To shelter you from this reoccurring dilemma. Marlesha Jardine Robinson-Brown 9
LOVE We do it for love, Not for thanks or praise. The minutes, the hours, the weeks, the days. Time. Time spent on love, For love alone. Time, given. We often say we have no time But time is something we are given, we do not own: We say we have no time; But we give it as a gift, And there is a shift. We accept. We exchange our time for love. We choose to care. We are there. Giving. Giving life, and time, and love. Unconditional I give my all. I hope it is enough. Suzanne Munro 10
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Rendered Inoperative One two three four, above and below, this is it. Same temperature, same air, sustained artificiality One two three four, above and below, this is it. Media sound constant babble forced sensibility One two three four, above and below, this is it. Packaged food, packaged soul, packaged touch One two three four, above and below, this is it. My incarceration my domicile my crutch. One two three four, above and below, this is it. White walls, white ceiling, polished floor. One two three four, above and below, this is it. Null and void, tell me f..k, what am I here for? One two three four above and below, that s just it. Julie Ball 13
Carers Caring Carers caring this is the life we lead We give the support our loved ones need. We had a stylish marriage With a Rolls instead of a carriage But life s not the same Since the illness came So do your best and hope for better Good news may come in a hospital letter Paul Dew 14
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To Love, To Feel To Love, To Feel To Smile, To Care To Lend A Hand Even When You Don t Understand A Bit Of Patience Goes A Long Way Even When You Don t Know What You Can Say To Make A Call Does Mean A Lot For That Lonely Someone When That s All That They ve Got To Visit A Friend When In Need To Give To A Stranger When They Plead Young Or Old We All Have Our Own Story That Can Be Told Some Days Can Be Good Other Days Can Be Bad Reaching Out To Another Will Make You Feel Glad To Recognise Someone Else s Dream To Pull Together As A Team To Love, To Feel To Smile, To Care Just Being There Ros John- Baptise 17
Treasured Item My treasured item means the world to me. It costs nothing; it is priceless. It is small and maybe insignificant to the world but to me it cannot be replaced. During the busiest time of my life while I was in the hubbub of my marital years and with a growing family I thought I had lost it forever. Fifty happy eventful years passed and this little treasure kept popping up though those memory neurons to haunt me. I would put it sleep where it belonged in the pillow of forgetfulness and charm myself with a memory sharp as a razor, seeing it when I was barely for years old. My mother showed it to me, told me the story of the treasure and put it back where it belonged. I felt that she would look after it for me and I would take it to show my children and maybe grandchildren and great grandchildren. When the thought came to the fore being with my mother for those thirty years of caring for her I asked where she put it. I will get it out when I get out of bed and keep it on the dresser for you. That satisfied me and I went on about my business. She became weaker and it was no longer a priority. With business, home, children and my caring duties this insignificantly disappeared from the cushion of clarity. 18
All those years passed and like a thunderbolt out of nowhere my husband had a near fatal stroke in 2001 and was taken to Queen s Square Neurological Hospital where he had an operation to remove an aneurysm clot that left him paralysed. It took more than a year of professional care to get him to a hospital near home. Not once did that treasure come to the forefront. Then the awful period of his rehabilitation and to some extent my own! That little treasure was buried deep in the archives of my brain. Was it hidden forever? Was it no longer my forever friend? I had a lot to do. My children and one by one my beautiful grandchildren arrived. Their cuddles and playfulness gave my husband and me a million stars of joy and happiness. The wheelchair could easily carry him and three little ones while we lingered in the park and hear their squeals of joy as I pushed them on the swings and my husband imagining that his paralysed hand did the same. Years passed truly eight difficult years when my sisters took over my caring role for mother, changed her locks and took her to one of their homes. I lived opposite mother and witnesses gradually how stuff was taken by car away from that loving home where I visited every day to give mother her injections, bathe her and ensure she had the correct meals. I had to make an appointment to see my mother. 19
Eight years later my husband died in my arms and barely eight months later my mum died in my arms. All I could think of was that I was lucky she was in hospital in palliative care and my daughter was visiting. She tried to ring me but I did not hear the telephone ring. Instead, I felt like the kitchen was in turmoil, being smashed. I felt like I had to get to hospital. I practically drove like a mad woman. My daughter and I held her hand and my mother whispered in my ear There is a box, a small one for you. Get the key from the house deeds. We could see the colour drain from her face from white to blue. I held her so tightly as she joined my dad wherever he was because the shut window opened and there was a breeze blowing in. Seven years later due to a difficult probate I sat there in that austere office of the Probate Representative and he read out mother s will to all six siblings and handed each of us a box. I fingered the box and wondered if my piece of treasure was there. I asked Was a key to my box handed to you by the solicitor when my parents house was sold?. I gulped and cried silently when he said Yes. I Opened my treasure after some seventy years. I had to take it home to savour that moment. I opened the little silver Christening powder box with a hint of talcum still there. Folded in it was a piece of brown torn paper. I unfolded it and there in charcoal was a sketch of a chubby face of a baby. The secret in my brain became a reality. Edith Cassel 20
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What is a young carer? Young carers are children and young people as young as five years old who care for a family member with a long-term illness, a disability, a mental health issue or a drug or alcohol problem. 23
Phil and his dad There was a young carer called Phil He had to help his dad who was ill Some days Phil was glad, on other days he felt sad. Phils dad wanted what was best He wanted Phil to have a rest Hillingdon Carers helped his son They took Phil out to have some fun. Daniel Cater-Lawrence Age 6 24
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Smelly Pants Smelly pants on the floor, Smelly pants on the door! Smelly pants on my head! Smelly pants on my dog Smelly pants flying through the thick dark fog. Pants are here Pants are there Pants always everywhere Who likes them They should only be on my legs Not on the floor Not on the door Not in my bed Especially not on the dog Nor flying outside in the thick dark fog The best place for smelly pants is in the washing machine Clean pants everyday is always the best way Ronnie Hughes Age 9 27
My Club Young carers I come every Tuesday; on the day I m buzzing for the time to fly by! You can be yourself! Have the time to rest! No one outside the door understands my thoughts. I m 9 years old I m on the ball to lend my hand to help my mum. Going down this path has been hard but being part of a team with young carers, my path has got better. Caring for others who are in the same boat as me, the boat is rocking because I m not on my own. Asking for help here is amazing they always complete their mission. Having people to play with rather than standing on my own I have a hand in hand friend. Everyone here including the team creates a circle of trust and we believe in everyone. Respect for other who are hurt, but talking and playing lets you be yourself with no worries on your hand. Smiling as I walk in the door and out! At the end of the session because I m HAPPY!!! Thank you for being there for me. Ruby Frewin Age 9 28
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Saturday Club You can run you can jump but you ve got to have fun On Saturday clubs you can play with everyone Under the sun you can make lots of sound No time to sit down there s fun all around Go make friends there s lots to do with them Come and let s go play And do not stop do not delay Run around not stopping now Everyone s having fun I ll show you how. Rush to the art room and do some drawing Stop looking bored when you could be winning Elouise Webb Age 9 31
Hillingdon Carers Partnership If you think you might be a carer or know someone that you think might be a carers, then help and support is available. The Hillingdon Carers Partnership was formed in later 2015 to simplify access to help for carers living or caring for someone in the London Borough of Hillingdon. Five large charities came together to provide a whole range of advice, information and support for carers from 5 to 105 years old. One phone call is all it takes to access the help you might need. Please call: 01895 811206 32
Services offered include: help to claim carer-related benefits advice and support to secure help in your caring role replacement (respite) care extensive health and wellbeing services, including yoga, chairbased exercise and personalised diet and fitness advice Carer Cafes across the borough Specialist support for carers looking after someone with dementia, mental ill health or at the end of life Therapeutic care and complementary therapies Counselling and talking therapies Training and workshops Young Carer Clubs across the borough Supported transition for young adult carers moving on from school Social activities, trips and weekends away for young carers Support to access employment for carers of all ages Free legal advice and a range of legal fact sheets, courtesy of a local law firm Free nail-cutting for older carers Health MOT days and Pamper days 33
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Acknowledgements Hillingdon Carers would like to take this opportunity to thank the people responsible for the publication of this collection of poems and short stories, without whom this would not have been possible. Our sincere thanks to: Carers - without the many fabulous entries, this anthology would not have been possible. We were all blown away by the talents of all entrants, young and old, and are just sorry that we were unable to publish them all. Peter Musgrave - Peter is a carer for his wife and has been the leading voice in the development of the Creative Writing competition for carers. He runs a writing group in Ruislip and was a judge on the panel. Emma Filtness - Emma is a Creative Writing Lecturer at Brunel University. Emma has supported Peter to develop the competition and provided some free workshops to both adult and young carers to help them to start to create their entries. Emma was also a member of the judging panel. IBB Charitable Trust - Special thanks to IBB Solicitors charitable arm, the IBB Charitable Trust, which provided a grant that has enabled us to both publish carers poems and stories and to host an event in early 2018 to recognise their achievements. Thank you for the generous donation. 35
Hillingdon Carers 26 High Street, Uxbridge UB8 1JT 01895 811206 office@hillingdoncarers.org.uk www.hillingdoncarers.org.uk Registered Charity No. 1082297 36