This piece is part of our 2023 Community Writing Series showcasing new writing by the Wandsworth Carers Centre Writers Group, in observance of Carers Rights Day 2023. You can read more about the background to this project in our introduction to this series, find out more about Wandsworth Carers Centre on their website, and find them on Twitter @CarerWandeworth.
What do I tell the grand kids?
Mum’s care needs have now changed. She no longer communicates with words, but with screaming and shouting like Chewbacca from Star Wars! The screeching is soul piercing, sorrowful and painful. The Mother tongue (Yoruba language) is more dominant than the English language once fluently spoken . A dark cloud sits over her head, with occasional glimpses of sunshine bursting through the clouds.
Mum spends all day lying vertically in bed, just waiting like a mascot for some sort of movement or interactions. As you enter her room her eyes gaze at you for instructions for you to either tell her to lift her legs or arms, or to sit up. She waits either for the family, or from the carers to dart in and out of her room doing the same daily routine. The carers both caring and motherly women, greet mum with “Hello Aunty! how are you doing today?” Mum smiles, as she recognises their familiar faces, and instantly knows the usual routine. Anything out of the ordinary can set her back, and needs to be reset like a computer device being put back to factory settings.
The colourful box entertains her all day. It watches her more than she watches it. Whenever I phone and ask her what is she watching, she always says BBC 2. I know it’s not always BBC 2, as she likes the Food network channel and the Film channel too. Mum was always one to watch Colombo & Ms Marple. She was her own Detective, as she always solved the crime before anyone else! She would watch the Drama and interact by talking and shouting “He’s behind you! “ Or she would guess who the murderer was before anyone else would. It was a delight to watch mum in her element on a Saturday night watching TV.
I look into mums’ eyes looking straight back at me. Innocent eyes, memories lost. Whenever she has the need to cry out, she shouts “my mummy oh!” followed by sorrowful cries, sometimes accompanied by nervous laughter just like a little child. I offer her food or water, then she stops the cries and finds some sort of comfort in the feeding of food or drink. I extend my hand to hold hers, then stroke her arm. Simple touching connects and grounds her, she feels safe and secure. She smiles a very warm sweet smile, then asks a random question. There are times when she remembers things that have happened a long time ago, or asks me about a particular person that even I cannot remember. She is still here; she is still present. If only that were 100% true, and this ghastly disease was not true.
Prayer and faith are what keeps me going strong. She spent most years in church and praying for other people. Anytime I had a problem she would say pray about it, there is nothing too difficult for God. She knew scripture by heart; she would run bible study groups and Caring hearts home groups as a leader. She was well known and respected in the church. Now it’s our turn to lift her up to God for healing and encouragement.
Mum looks very well, her skin unblemished, unwrinkled for 82 years is not bad at all. The odd grey hair bursting through the dyed black hair reminds you of her age. Mum never liked the fact that she was growing old. She would always ask me to pluck out the grey hairs when they made their first appearance. It felt like effort trying to pluck the slippery grey hairs from her scalp. Mum made sure I caught all of them before I could leave her presence. She would keep on checking her head at all angles in the mirror. Only problem was the more you plucked them the more they seemed to appear! In the end I had to keep her happy by dying it black which lasted a long time.
Mum was always chatting, laughing, bubbly and very popular at work and in church. Now, she rarely speaks, only talks when prompted with a few words or grunts.
Mum where have you gone, where are you hiding, what has happened? Are you scared? Are you worried? Are you ok?
I could hear the grand kids asking, as they play around her. Every now and then they ask Grandma “are you ok?”
What do I tell the grand kids?
She smiles back at them with that Grandma smile, then closes her eyes to catch a moments sleep. The grand kids vary in age. The oldest one remembers grandma’s booming African voice and laughter. Always shouting and being heard above all voices, cracking jokes as she dominated her space. The middle children remember her visiting them and going out to various functions where grandma was always in attendance too. The youngest child only sees grandma at home either in her chair or in her bed.
I now realise there is so much I can tell the grand kids. Grandma has the greatest memory since she has lived long. It’s all locked into her mind and comes out every now and then when she wants to let it out.