Dementia poetry is not pretty. Moreover, it is not meant to be! It is, however, designed to bring the reader into the world of those who are no longer able to access ours.
Here you will find raw emotion and pain, along with touching glimpses of the sheer beauty of humanity.
I write to heighten understanding of this sometimes awful, sometimes wonderful condition. Wonderful? Imagine being able to leave adult life behind and live out your childhood dreams for instance.
I worked as a Dementia Care Coach and Deputy Home Manager in elderly residential care. I rarely saw anyone with dementia who was distressed or unhappy for long. But that is because we had the training to accept their world, their normality, and live in it with them. I was trained to coach care staff and I am keen to pass my learnings outwards into the world, consequently benefiting as many people as possible.
Of course, staff get to go home at the end of their shift to recover. They care for the people with compassion and understanding – more than they are given credit for. But the people with dementia are not their family or loved ones. Many of you will be broken inside, watching someone you love disappear, taking your strength and spirit with them. Nothing I can say will make that feel better – although I wish I had that skill.
The future of dementia…
I have written an ebook explaining dementia to children via rhymes. It is designed to give adults and children a safe space to explore their feelings and ask the important questions. Why Doesn’t Granny Know Me Now? has three amusing poems with following text. At just £3.99, it is less than a large coffee – it is priced to reflect my commitment to educate and reassure children about dementia.
Children are our future. If we teach them to accept and understand dementia then it will cease to be the issue it is now. It will be recognised earlier and those with it treated with greater respect. Lastly and most importantly, dementia does not have to be a miserable, lonely end to life!
That is my passion for this stage of my life – but although passion feeds my soul’s hunger, it doesn’t always feed my physical hunger. If you like what you read, moreover if it touches you, please consider a small gift – the price of a mug of tea and a biscuit perhaps? Bless you, x , Trudi
Belle of the Ball
He watches her, still in love, Always the belle of the ball. Oh for one last dance, but those days are gone. Now she shuffles, if she gets up at all. Her radiant smile is never seen, Golden curls are now flat and grey, The voice that sang as she worked screams in fear, It would break her heart to be this way. It breaks his too, to watch her pain, The lovely girl who is his life. Memories he has, and she has none, Yet he swore, unto death, to protect his wife. What can he do, he feels he's failed, For she needs him more than ever. But his body is weak, he is an old man, And he has no more to give her. So he smiles and holds her hand once more, She does not try to fight it. It was always assumed that he turned on the gas fire, And the fool forgot to light it. He watches her, still in love, Always the belle of the ball. And they dance. Forever.
Living the Dream was written as the final part of a training programme. In the poem, I show how even well-meaning, efficient, staff can get it wrong. BUT teaching understanding and compassion was amazingly rewarding for me and I hope that I was equally compassionate with the staff. The poem does not reflect the practice of those I worked with, moreover, I was always extremely proud of them! This poem is a great training aid, feel free to take it for that use. Finally, I retain the copyright on all my work ©wholelifepoetry.com 2021. I would, however, appreciate a donation towards my expenses as an exchange. A cup of tea and slice of cake maybe?
Living the Dream
Imagine your everyday life like a dream- Strange happenings, confusing, things not what they seem. You don’t know the real from the wrong and the fake And life is a nightmare even when you’re awake. You recognise a book, a smell, or a chair But you don’t know from when, who it was or from where. You know it makes you feel happy, content, maybe sad But you do not know why, what significance it had. You know you’re not home, but can’t think where home is- Can you think of anything more frightening than this? Then a person you don’t know, much bigger than you Comes bounding in and tells you what to do. They pull off your clothing and say it’s alright, They tell you that they do it every night. But have you seen them before today? Aren’t these the games that Mother said not to play? You try to resist, you don’t want to be nude… And they tell you that you are the one being rude! You cry for police, Father, husband, a saviour… And they tell you to “stop exhibiting challenging behaviour”. You are confused and anxious, consumed with fear But you co-operate now because “it’s for the best, dear”. Scared now, you be quiet, they hold all the power, And it will only take a “quarter of an hour” So washed according to standards- and filled with dread They say that that’s better and shove you in bed. Job done, boxes ticked, so all is alright The stranger closes the door and says “have a good night”! You wish that the words..."see you in the morning" Sounded more of a promise and less of a warning. No kiss and no comfort, no dozing off soon- In a strange bed, in a strange room! Then a few hours of solace, a short time of rest… And you are woken by a stranger: “Let’s get you up, washed and dressed” They strip off your dignity with your pyjama trousers And show you an array of dresses, skirts and blouses. They tell you that you must choose, you must have a choice But you cannot hear yourself think over their voice. If only they would wait and let you speak You’d tell them that you’d had that slip on for a week. Then they say you must eat or you will go skinny and sicken, But Mother never cooked Lasagne or sweet and sour chicken! You do as you’re told, you “be a good girl” And try to make sense of it all…it’s a whirl Of youngsters, and strange rooms and unwritten laws With few familiar comforts you recognise as yours. Dear carer, if you dream this, I pray you’ll awaken… But for me, it is life, until I am taken.
The Little Things-
It's the little things I miss That first kiss of the day When you'd say "Tea in bed... Or should we just get up instead? " Or last thing at night Your reading light keeps me awake - For heaven's sake - KEPT me awake... You don't read now! You've forgotten how - along with so much more. You wouldn't know what a book is for. You don't recall my name People are all the same to you Shadows in your blurry world Causing fear that has you tightly curled in a ball That's when you notice them at all. Damn dementia...it's like you've found a lover Or another place you want to be. Without me. I know nothing lasts forever We are kind of still here together. You in body if not in mind Cared for by others who are ever so kind But I married you for better or worse If I can't be your wife I'd at least be your nurse Although my mind is stronger, the body won't last much longer. Oh the irony, You left our life before me, And yet I'll die whilst you struggle on You won't cry, won't really notice I'm gone. But I'll tell you this - it's the little things you'll miss.
A man and his boy…
We stood and watched the lights go out, one by one, Me and my old man As the world drifted off to sleep before another day began. The night air, thick with muffled sounds and scents, Wrapped itself around us, a damp blanket, and no-one could see The man and his boy, inhaling the darkness, Breathing in its secrets without needing to understand That those whispered insights would disappear with the morning along with the stars. In the distance, a dog barked a warning, A single sharp shock before the unheard grumble at the cat on the wall. A light went on, the light went out. Disturbed slumber. I vaguely wondered why, But that was not my story to tell. The late train gently rumbled, Brightening a piece of land, a house, a tree Before the light travelled on and they settled back into the comfort of blackness. Has life been like that for you Dad? Moments of illumination between shadows, Flashes of knowing, of remembering – But not understanding the memory. Today I stood and watched the lights go out one last time. Now you can breathe in the secrets of the darkness and understand. Goodbye old man.
Are you trying to balance caring for someone with dementia and the needs of a young family? This book, “WHY DOESN’T GRANNY KNOW ME NOW” will help open the doors to frank and honest communication in a fun, child-friendly way. It has three amusing poems with accompanying text which allow you and the child to find a shared space and approach an understanding. I worked as a dementia care coach after training by the Norfolk and Suffolk Dementia Alliance, I also completed training as a midday break supervisor in a primary school – that’s a dinner lady! I have three grown up children and a growing tribe of “Greats”.
She sits half asleep, day after day, in a world made senseless by her own brain. Oblivious to all that surrounds her, Lost in her own emotions. Lost in the feelings of the person she has become- For she no longer remembers who she is. She no longer remembers where she is. She no longer remembers why she is. She just exists. Exists in a place of confusion, a place of noise- A cacophony of discordant sounds and sights. Body made comfortable, mind soothed, she rests- Only to wake to a nightmare. Every time. Hands touching her. Hands from nowhere. Voices. Incomprehensible voices. Her reaction is instinctive, primal, fright. Terror. Can you see beyond the screams of this wizened creature, Can you look beyond the smell of urine, Can you see the beauty she once was? More...can you see the beauty she still is? There is a heart beating. A soul crying. A life nearing its end.
Although you are a stranger, I see you every day. I do not know the person I visit, You do not know me. We talk of nothings, bland pleasantries, for you know nothing of my life. To tell you is to confuse and upset you. It drags you from your blank world of comfort Into a frightening, emotional land where nothing makes sense. To ask about your life causes us both pain, For there are no memories you can share. So it is best we remain strangers, Taking tea, talking of nothings. When I leave, you will not remember that I have been. When I leave, you will not remember that I ever lived. When I leave, my heart breaks... I miss you Mum.
I Miss the Person in the Mirror
I miss the person in the mirror...where did she go? She used to smile at me and we were friends I know. But now, a sad hollow-eyed shape is there, Returning my gaze with a pleading stare. Wearied and mourning the time she has lost Each line and mark on her face is the cost she pays For wasting her days staring in the mirror in emotional pain, Trying to find that smile again. I miss the person in the mirror...where did she go? She used to smile at me and she knew me, I know. She followed a promise that broke along the way, She followed her heart-fool! It led her astray - She followed a dream that someone else intended living. Piece by piece, giving herself away Until she lost too much of the puzzle, her mind a muddle - And she forgot the picture on the front of the box. Her memories shut away, no keys for the locks to the gates. So she stares at the mirror and waits for man or God. The labyrinth she trod was a one-way street, She marched along obediently to someone else's beat. The song she sang was never her own, And the tune faded in her ears until she found herself alone. I miss the person in the mirror....where did she go? She used to smile at me and I knew her, I know. But now I see through her...for the smile is not real, And her eyes make up stories to explain how I feel. But the one story which has been torn from the book Is mine - hers - and the lifetime it took to write is on its final page. This sad play is about to leave the stage. Years ago though, the heroine left it - did she write, did she begin it... She lived a life without being in it. I miss the person in the mirror....where did she go? She used to smile at me and I know she used to be me. Whoever it is in the mirror I see, She is not me.
She sits in the corner –
She sits in the corner and stares at the wall, She knows she has nothing to live for at all, And she closes her eyes to shut out the pain of the Same old routine again and again She sits in the corner with nothing to say, If she speaks no-one listens anyway And she closes her eyes to shut out the sight of Day after day, lonely night after night.... So tell me what do you see? A broken old lady who ran out of dreams? She sits in the corner, looks barely alive, Waiting for someone who never arrives. And she closes her eyes to hold back the tears For the man she lost after so many years. She sits in the corner, remembers the past, Her life and her love -it ended too fast! And she closes her eyes to see him again - And wishes she lived back in memory lane. So tell me what do you see? A broken old lady who's ran out of dreams?
Always wanted to turn that into a song…it never happened. If you want to, do so! Credit me as lyricist and send me a cup of tea and a bun x
Inside Beats the Heart of a Child
Time has etched a script upon my face, Each line a memory I cannot erase, But inside beats the heart of a child. My eyes remember the sun and the rain, Picturing happiness, picturing pain, And inside beats the heart of a child. Slow now, my body, weathered and worn, Spirit is failing, the life from me torn, But inside beats the heart of a child. I still long for rainbows, for love and for home Age does not give you a soul made of stone Because inside beats the heart of a child. I dream of a lover, a prince clad in white; He bears me on horseback into the night, As inside beats the heart of a child. So look at me now, who do you see? PLEASE not a old lady…I am still me. And inside beats the heart of a child. Talk to me, laugh with me, enjoy what I do Because one day these words might just come from you… INSIDE BEATS THE HEART OF A CHILD.
A Night at the Funfair
A night at the funfair- every night. The lights and the music confusing my brain... Garish! Discordant! Flashing! Bright! Each ride worse than the last – yet all are the same. I stumble between each attraction and stall The dodgems bruising my thoughts and dreams, My route unsure, battered, I fall. My steering knocked sideways by missiles unseen. A night at the funfair- every night. The ghost train taunts me with mocking jeers. It feeds on my terror and tightens its bite I can’t turn away for these are my fears. The roller coaster drives an anxiety peak Then drops me down to the depths of despair. Gasping for hope, I wake but can’t speak... And I’m still at the funfair – every day – I live there!