Where to start? I suppose at the beginning. My lovely, warm, kind & caring mum, Alison Claire Codling, was born on the 19th of December 1964 to loving parents, Patricia and Terence Codling. She had two sisters already born, Debra being the eldest and Tracy in the middle, both of who came to adore the new addition to the family. Alison was a relatively quiet girl who could be incredibly shy when it came to mixing socially and attending school, she had a sensitivity to her which she kept into adulthood. As a teenager she adored the eras heartthrobs like most young girls her age, fancying the pants off of the likes of David Cassidy, Donny Osmond & the Bay City Rollers. She used to race home from school, desperate to watch Woody from the BCR on their television set. She was a bright young girl, who excelled in school and went on to work in administration and sales for various companies, one of her fondest positions being at DHL. 

At the age of thirty-two on the 19th November 1997, she became a mother to me, Hayley after a difficult pregnancy. Growing up she was the most nurturing, loving and supportive mum who worked tirelessly to ensure my happiness in life. We developed a particularly close relationship, a special bond that I will forever be grateful for. Though admittedly at times we were in each other’s pockets, I wouldn’t have had it any other way and I will treasure the memories I have for the rest of my life. My mum was the type of mother who I could turn to no matter what, no topic of conversation was too taboo or off limits, she constantly reassured me that I could come to her with anything and she never made me feel as though I were a nuisance for doing so. She didn’t at all have it easy with me, she had to put up with a lot, namely my ongoing struggles with my mental health which begun at an early age, with problems arising in my schooling. She strove to understand and support me in the best way possible and I never felt alone as a result of this. 

As a young woman, I can wholeheartedly say she was my best friend. She & I were at our happiest in one another’s company, whether it be sitting in our pj’s and watching television or driving through the countryside blasting the most random songs whilst we’d giggle our heads off and rant, rave or chat about anything and everything. She’d crack dirty jokes and tell me the juiciest stories from the past, never biting her tongue. We’d grab iced coffee’s together and park up somewhere, crying to one another as we held hands and promised each other we’d be alright no matter what. We could be vulnerable to one another, let out our emotions and tell each other secrets, exposing the innermost sensitivities of our brains. Not many mother & daughters can say that about their parent and for that, I am unbelievably proud and grateful. 

Early April 2019, I remember jolting awake & sitting bolt-upright in bed as the door downstairs slammed closed and my mum could be heard sobbing, informing her mum who we were living with, that she’d had an ambulance called for her whilst at work. I was shaken hearing my mum in so much distress and I immediately ran downstairs, took hold of her hands and sat in front of her chair whilst I asked her what was wrong and did my best to try and console her. She’d had a panic attack at work, after days of complaining to me of feeling not right, anxious, tearful and that her heart was racing. I smiled weakly at this, understanding all too well how awful that felt. I hugged and kissed her, telling her everything would be alright, as did her mum. Months went by, with various medication being stopped, started, upped and downed and with very little progress being made. If anything the panic attacks became worse, the anxiety heightened and at times my mum would just burst into tears and pace as if not knowing what to do. To see my rock crumbling was one of the hardest things I have ever seen, my mum was a strong and at times feisty woman who confidently would do anything and drive anywhere with little care or worry. For her to suddenly appear broken, frightened and lost was heartbreaking. I relied on her all my life and now she was having to rely on me, as well as the family. 

By early 2020 she had deteriorated so much that she was referred for a CT scan of her brain, just to make sure there was nothing else going on. My mum’s memory had begun to fade. At first, it started with her turning in the wrong direction when she’d go to places she knew, like the local shops, etc. She’d go to walk the wrong way, realise her mistake and then laugh it off, though in time she grew frustrated at this. Then she started doing this at home, not knowing where certain cupboards were or remembering where she’d put things. Finally, it affected her driving, she could no longer remember where to go and she’d take wrong turnings and panic that she’d not be able to find her way home. I’ve never seen her concentrate so hard, her hands gripping the wheel as she stared ahead at the roads blankly. And so, she stopped driving. Her CT scan came back normal, with the doctor insisting it was perfectly normal which for a brief time reassured all of us. I don’t think it’s difficult to see why we had all, including mum, begun to worry that perhaps this went deeper than simple mental health problems, that perhaps this could be down to early on-set Dementia or Alzheimer’s. 

Medication continued to change with very little to no change and yet her symptoms were growing worse and she was gaining new ones. By April 2020 she was unable to sit still, her arms would move around, as well as her head and eyes as if she were constantly looking for something. Her feet would shuffle along the floor and she’d struggle to walk long distances, even going from the living room to the kitchen for dinner came with great difficulty. She began to struggle to eat, staring into space holding her cutlery and looking at myself and her mum as if we were mental for telling her to eat. 

I don’t remember exactly when things took their most worrying turn, the months, weeks and days blurred into one as I solely focused on caring for my mum. I started to wash, dress and feed her, as well as lay her in bed. All with as much help as her mum or other family members could assist. I slept by her side, terrified she was going to wake in the night and walk out onto the landing as she had several times. If she needed the toilet, it could take up to half an hour for me to gently walk her to the bathroom and sometimes she’d simply sit and look around the room instead of emptying her bladder. Sometimes she wouldn’t sleep at all, she’d lay and then sit up on the edge of the bed - not moving despite my frequent encouragements to sleep. And so if she didn’t, neither did I. The last few months were the hardest, one night in particular I remember asking her if she knew who I was and she paused to think. My heart was pounding as I stared at her, pleading inside my head for her to suddenly laugh and tell me I was being silly for asking, that of course, she knew me, after all, I was her only child; her daughter. But instead, she began to frown, sadly looking from me to the floor as she racked her brains for the answer, I began to feel my blood boil with anger. How could she? I began to badger her with questions, who am I? What’s my name? When’s my birthday? Where are we? Do you know whose house this is? Each question failed to get an answer. It must have taken me over an hour before she quietly uttered ‘you’re my Hayley’. Tears streamed down my face as I took hold of her in my arms, holding her close as I nodded my head desperately. Yes, mum, I’m your Hayley. 

Nothing can prepare you for the most important person in your life to not remember you or certain details about you. Though she went on to have continued moments of lucidity, she was never quite the same. All these incidents looking back were the beginning of the end. In time she began to whisper, she couldn’t form complete sentences and then eventually her main way of communicating was by nodding or shaking her head and even then it was hard to distinguish how much was her giving an answer and how much of it was just to make us happy. On the 5th of June, mum hadn’t urinated for over twenty-four hours. She’d fallen out of bed and was unable to pick herself up off the floor multiple times by this point, with several ambulances having been called simply to assist us in standing her up. After my nan called the doctors due to the urgency of the situation, a doctor came to the house and immediately called for an ambulance for my mum so she could have her bladder emptied in hospital. We were told she’d be home that night and if not, first thing in the morning. She never came home. 

Having to explain to my mum that I couldn’t go with her, that she had to go in the ambulance alone due to COVID-19 was one of the worst feelings. I felt so guilty that she’d be alone. I explained to her in tears that the hospital couldn’t allow me to accompany her, that I was sorry but that she’d be home soon. She merely nodded, going between smiling and looking saddened by the fact I was upset. That next morning I received a call from the hospital, that she’d likely be going to a local centre for rehabilitation before coming home. Then another call to say she had increased muscle tone. When I asked what did that mean, I was told it indicated there was likely an underlying condition occurring, something neurological. Then another call came the next day, she’d had an EEG & her results were abnormal and showed that again, something wasn’t quite right. They did blood tests, everything came back normal. Then the following days and weeks after that, an MRI scan which at first I was told was completely normal. Then the last test, which was emphasised to us as most important, was a lumbar puncture, also known as a spinal tap. The results came back normal, I was told, but that one particular test would take time to come back as it had to be sent to Edinburgh. I wasn’t told what it was for or why and so I just accepted it. 

Every day I’d call the hospital, asking how she was and if she’d eaten or drank anything or if she’d gone to the toilet. I was told she now was incontinent, that they were changing her daily. That in itself was shocking to me. How had her condition so rapidly declined? I didn’t understand. But still, I & my family held out hope that perhaps this was some sort of catatonic state she was in, that she’d be able to have rehabilitation and come back to us, to reality; as to us, it felt she’d slipped away. I was told mum was eating, for the most part, pulling faces of disgust at certain foods such as fish pie which often produced laughs from us. She absolutely despised seafood. She was eating puddings with great enthusiasm, chocolate puddings and ice cream, custard and gulping down bottles and bottles of banana milkshake; all of course aided by nurses. I’d come off the telephone grinning, exclaiming to the family that she was loving banana milkshake as usual and making the most out of having plenty of sweet treats. Then one day she hadn’t eaten much, but she’d drank the high-calorie milkshakes. Then she’d been seen by a specialist to evaluate her capability of swallowing, I was told she had gone down a level and so instead of things like roast potatoes, she’d be given alternatives such as mash or soups. 

Somewhere in between all of this, I did what most people warn you against doing. I googled ‘lumbar puncture Edinburgh and stumbled on Edinburgh University who was doing research on prion diseases. From there I read about CJD, my gut twisting with each article I read. No, that’s too rare, I reassured myself and I didn’t tell anybody what I had seen for fear of worrying them. Then one day I got a phone call from the head of the neurology, she told me they’d taken a second look at my mums MRI scan and found something not quite right. The cortical of her brain indicated ribboning. When asking what that meant, I was told it could potentially mean she was suffering from something called CJD but that as it was incredibly rare it was unlikely. My heart dropped. “Do you know what that is?” Asked the neurologist, I said yes and explained how I’d stumbled upon it. She sympathetically apologised, sorry that I had stumbled upon it myself rather than hearing it from them as to what they were testing her for and why it was being sent to Scotland. 

Within the next few days, as I’d just sat down with my breakfast, I had a horrible feeling in my gut. The phone is about to ring, I thought and so it did. Answering it, the neurologist explained they’d had the results back from Edinburgh and that they indeed indicated and were showing a positive result for CJD. In my mum’s case, Sporadic CJD. “Okay,” I said softly, staring down at the carpet whilst my nan stared at me from her chair. “How long has she got?” I asked. “Usually six to twelve months, looking at the way your mum is and how stable she has been since arriving here, I would say closer to twelve.” She replied. “Will she-” “She’s not going to get better, Hayley.” She interrupted me. It was a punch in the stomach. “Okay,” I replied. It was arranged immediately that as she was end of life care, I could come to the hospital & see her, despite the current COVID-19 regulations. 

Going to see my mum in the hospital was the most difficult thing I had to do. My lovely Uncle & Auntie drove me to Bath, where they walked me to the entrance before I was escorted inside and up to her ward. Having to do so alone, without any family by my side was terrifying. Even in the short space of time that I hadn’t seen my mum she had deteriorated. I was pre-met by a lovely nurse, who took me into a room and explained how my mum currently was and asked if I would like her to be dressed a certain way as I had brought clothes for her. After they changed my mum into a nightie her sister had brought for her, I was led into the ward. I remember my anxiety spiking the moment I saw her, as she was completely mute, teeth grit and unable to control her movement. Despite the nurse announcing my arrival, she showed no signs of being aware of me. 

At first, I immediately told my auntie via text message that I couldn’t do this and would soon meet her at the entrance downstairs, but after getting over the initial shock I stayed with my mum. Offering my hand, she took it and wouldn’t let go. I talked to her gently, whispering how sorry I was that this was happening to her and how much everybody, including myself, loved her. In time, I began to softly ask questions. If I asked if she loved me, she’d give enthusiastic nods. If I asked if she wanted a cuddle, she’d do the same and hold onto my shoulder. If I got upset and cried at her bedside, she’d sadly frown. I asked if she wanted me to come again if she had missed me, again I was met with hurried nods of her head. Those moments lasted seconds but I’ll forever cherish them. I visited mum in hospital several more times, each time the nurses were delighted to see how my mum would sit up straight in the bed looking for me if I had taken a step from out of the privacy curtain. They told me they’d never seen recognition from her until then. Eventually within those last few weeks, mum slowly began to stop eating and later on, drinking. I took her favourite things for her, diet coke & ASDA’s banana milkshake but neither were touched. I was told she no longer felt hunger or thirst. The last time I visited her in Bath, she slept almost the entire time whilst I stroked her hair. 

Two days before my mum passed away she was moved to a care home, where she had her own room and privacy. At first, I was told due to COVID-19 I wouldn’t be permitted to visit unless they thought my mum was in her last moments. But that changed when they could no longer get a blood-pressure reading from my mum. I was immediately contacted and told to come in. The ride there was horrendous, I was sick to my stomach worrying that I would be too late, that she’d of gone by the time I’d get there but thankfully she held on and remained stable. My auntie & I held her hands, talked with her, laughed, cried, sang songs and generally made sure she was comfortable. I then kissed her goodnight and left, with permission to come back the following day. 

On the 7th of July, my uncle finished work early and immediately drove me to the care home. He came in with me and we again, talked to mum whilst holding her hands. At five to seven that evening, she passed away, surrounded by family. I held her hand, I kissed her on the forehead, her cheek and finally her lips and left the room with my final goodbye. ‘I love you,’ being my last words as my mums to me were ‘I love my Hayley’. ~ written by Hayley, Alison’s daughter. 

The work Edinburgh University do is crucial to finding out more about prion diseases. Please, if you can, think of donating in my lovely mum’s memory and/or sharing this link anywhere possible. Every single donation in memory of my mum goes directly to the CJD surveillance unit & every single donation no matter how big or small is appreciated. Thank you for taking the time to read this. Love ~ Alison’s family.