Lost threads

In my previous posts which talked of my history, identity and the impact of relationships I talked about how BBC4’s ‘Windrush Chronicles’ inspired me to write again. In my mind I think I actually had three stories to tell. However, I found the writing of the third was stoppered. I couldn’t begin the words and I couldn’t weave the threads.

I recently had a birthday and a dear group of friends, knowing that my relaxation came in the form of a long indulgent bath, bought me a bottle of ‘Badedas’ bubble bath (please note ‘other makes are available’ as the saying goes). This morning I opened the bottle and the smell of it poked at my mind. As the hot water ran into the gloopy green gel, making shiny, pearl-like bubbles, I sank my tired body blissfully into the warmth. I love bubbly baths. I love how my aching muscles are eased, and my busy mind switches off. I love looking at the shapes those bubbles make – and like looking up at the clouds – imagining I can see those shapes as animals or faces. However today none of those relaxing dreamy qualities came. Instead with a sharp pang a joyful but pain-provoking memory rushed in and the words were unstoppered.

My mum loved ‘Badedas’ – it was a treat for her and a go-to gift for her, as the cleaning lady, from grateful employers. The smell, the feeling of warm water on my skin, the noise as the small bubbles popped, made me remember and tears to flow. I remembered and the threads of the memory became clear. I can see her now, bent over the bath when I was a young child. She poured a bucket of hot water into the bath for me to warm my shivering body (in those days we didn’t have a bath with taps). Already wrinkly from being too long in the bath but begging for longer she smiled “Yes Ann, and as a treat you can have some of my bubbles in your bath”. There it was suddenly today – that warm memory, that poignant feeling of connection and love, tinged with sadness because of recent events, and as it came to the fore, feelings jostling for position, the stopper was forced off and the words sought release. This third blog was always going to be about my mum and lost threads.

The 7th episode of BBC4’s ‘Windrush Chronicles’ continues the story of ‘Cyrus’ now an old man played brilliantly by Lenny Henry. His sensitive portrayal of ‘Cyrus’ is heart-wrenching as it becomes clear that dementia has forced his memories to unthread making the past intertwine with the present and bringing back painful experiences from his early life. My loving, strong, funny (although sometimes frustrating) mother was diagnosed with Alzheimers 2 years ago. There. I have said it aloud. I wanted to share this story but it has been difficult to write partly because it is here and now, a life being lived, painful and raw. However it is also difficult because my mum is still ‘here’ and I do feel guilty that I am writing this without her consent. I have told her that I am writing and that it includes her…but her “that’s nice dear” does not grant informed permission anymore. So I beg forgiveness of her younger self if writing this crosses a family line that she drew, of keeping things to ourselves. However this is a story of lost threads, and the impact of early experiences that I am writing to try and make sense of a cruel disease that seems so sense-less.

I have previously made links to a set of books I read moons ago by Orson Scott Card called the Alvin Maker series. In these books appears ‘the weaver’ who sits in a house weaving the threads of human lives into a tapestry. My husband tells me of the links to Norse mythology and the Norns who spin the fates of man and gods and weave together their destinies. These images resonate strongly with my belief in the importance of human connection and relationships and the importance of understanding life more through listening to the stories of people’s lives. Whilst the threads of our lives weave together into the fabric of human existence, we also spin our individual threads with our identity being spun as a result of relationships and experiences.

My wonderful dad took his last breath 18 years ago on the same day that 39 years earlier I had pushed my way into the world to breathe my first. He left a hole in the fabric, as his threads were lost from that point forward, and there is seldom a week goes by when I don’t ‘talk’ to him. People who have suffered a bereavement often say that they don’t know what is better losing someone slowly or quickly. I really don’t know what the answer is to that – I have experienced both and ultimately they have the same result. You have lost someone and their light in your world has gone.

My dad was ill for many years and eventually we knew that he was dying. Those years were tough and emotional, but they were special years. He was a quiet reticent man, he could be sarcastic and stubborn – a proper Sussex man that “won’t be druv”. Growing up I never saw the man he was, he was just my dad. He was the person who laughed and joked (oh those bad puns), who would wink and give that crooked smile that said “I love you”, although never often speak those words aloud. He could cut me with sharp words, and demonstrate fierce pride at my achievements…he was my dad. When he became ill our relationship shifted and he became another human being. For the first time we sat and really talked about things as we had never talked before. I heard stories of his childhood and his adulthood. I talked about my worries and fears and he talked of his. Sometimes we would sit in companionable silence, sometimes sit and watch the television together and laugh until the tears came. He told me every time I saw him that he loved me. Not everything was that pleasant – my sisters and I provided care and support over the years he was ill, as he and my mum had long since parted. There was pain, oh so much pain, physical and mental, and there were many tears shed on the dark days at home, in hospitals and in the hospice. However, I had found a father could be a friend. We were two adults spinning and weaving the threads. A few days before his death, I sat with my head on his hospital bed whilst he dozed. I felt his hand on my hair, stroking it as he had when I was small “it’s ok my Annie, it’s all ok”. I knew at that point that he would soon be gone and whilst I was devastated by that thought, I realised how close we had become through our weaving. It took many years of sad birthdays with friends embarrassed as they wished me “Happy Birthday” watching as the tears pricked at my eyes, and of seeing sisters clearly hurting but trying to help me through and make it a happy day when clearly it wasn’t, before I realised the gift I’d been given. I had been given the gift of time and those precious days where together my dad and I had woven a fabric of memories.

Alzheimers is not so kind. It does not weave threads it cuts and tears at the fabric. It leaves a gaping hole before the threads are fully spun.

I have told the story of my mum and how she arrived in England at 16. I think that experience made her the strong woman she was, and it was her I thought of on this international woman’s day. She raised five strong women and has had a positive influence on who they have become. For the first 16 years of my life she was my world, the rock on which I anchored myself when life was stormy. We had a strong attachment relationship – I can say that with certainty now from my years of study of early childhood. She loves babies. She has that wonderful ability to know what a baby needs and to meet those needs with love and warmth – the epitome of attunement. She was always quick to hug, strong to lean against, with warm eyes that mostly reassured. When I was growing up she had a way of being present – both mentally and physically. Although my mum always worked, until my later teens she wanted to be home when we returned from school. A strong memory is of walking into the house and seeing her standing at the kitchen sink, in bright orange jumper and black trousers, singing and swaying to the song on the radio, a beaming smile on her face as she looked up to greet me. The warm feeling still sits inside me when I picture that wonderful memory – the manifestation of attachment. Through this attachment relationship she had helped me spin a strong thread, and together we had woven a colourful bright fabric.

Life events change people, and when I was 16 my mum left our family home. I cannot talk of those events here and the effects on me – that does feel like it crosses a family line. Needless to say I felt like my rock had been torn away and for years I was cast adrift in a stormy sea. Attachment is born from trust and the need for safety and security. At that point in my life the threads were still intertwined, but the fabric was scorched and blackened. It was at this point in my life that I realised that my mum, whom I had held up as some sort of paragon, was her own person not just my mum, a human with all the flaws that being human imbues. From this point forward our relationship though strong, was never quite the same – trust is a hard thing to rebuild once broken and the thread of attachment weakened.

I am not sure when we noticed that mum had begun to forget things. We could always find explanations. She was a busy lady, working shifts right up until she was 70, so of course she would forget things, that was natural. There were five of us girls whose names she had to remember, and much like anyone with children knows in moments of frustration those names tend to muddle themselves…however at last we noticed this happening more and more. We noticed the forgotten dates and times, the repetition, the confusion. A cruel event occurred when my mum went for one of a few tests to diagnose her ‘condition’ and came out in tears: “I knew there were five of you. I held up my hand to try and remember all your names, one by one, but I couldn’t. I couldn’t remember my own daughters’ names.” She was heartbroken as were we all. We knew that the threads were breaking, and although we didn’t know how long it would take, the mum we knew would disappear in front of our eyes.

The Alzheimers diagnosis arrived a couple of years ago. I say arrived, like an unwelcome, unannounced lodger it comes in and makes itself at home when you haven’t had time to prepare, and it wasn’t something you even wanted in your home. Like all human beings I have tried to make sense of something I don’t understand by pulling on prior knowledge and experience. Of course, my troubled mind has settled on early childhood as it’s what I live and breathe, and in particular child development and my limited knowledge of neuroscience.

In a child’s earliest years those working in early childhood are given an image of how we build brains – early childhood is a period of rapid brain growth and simple neural connections and skills form first, followed by more complex circuits and skills. Whilst genes form the blueprint for that development, connections between synapses are made through repeated experiences. Put simplistically the brain almost builds from the bottom up, as children play and experience relationships they form connections, and as they learn connections are made between the lower more primal part to other more specialist parts of the brain.

Often when I am with my grandchildren and they are working hard to form a new theory during play, I have an image from videos I have watched of lightning fast connections, bright lights turning on as connections are also made in the architecture of the brain. When I am with my mum and she is confused and her once bright eyes are dull, I see the opposite. It feels as if those connections are turning off one by one. We notice as the more complex social skills begin to disappear – the ability to self-regulate her words, emotions and behaviours becomes difficult for her. She has become increasingly loud in vocalising her dislike of particular people or experiences. The self-regulatory filter that she had learned from childhood has become thinned; where once she would rationalise and inhibit her behaviours instead she goes straight to the reptilian ‘fight or flight’ part of her brain acting and speaking without thought of the damage of her words, with what she sees as truth. Her daughters, with their attachment to her and her to them, are at times able to be her secure base and self regulate for her, just as she did for them in their childhood. The cruel part of Alzheimers is that this is all so unpredictable, working at times and not at others. Like a faulty electrical switch sometimes the connection is made and at other times fails. The further we go along the cruel path we follow her on, and her mental state deteriorates, we witness as the switch burns out and, as in childhood, the ability to control emotion is lost.

Early experiences and relationships, both positive and negative, form connections in the brain and provide a blueprint for later relationships. We watch as my wonderful mum forgets her most recent experiences, or repeats herself telling them to us again and again in an endless cycle. The most poignant thing for us now is the fact that in her later working life she worked in care homes for people with dementia. She always said she loved that work – it formed a positive memory. Just as she cared for children, she cared for elderly people. She stroked and soothed, she sang and laughed. She met their needs and provided intimate care often laughing “god made me lose my sense of smell for a reason”. Now she sometimes returns there in her mind, back to those times, and rather than being the resident she actually is, she becomes the carer joining the staff to help her peers.

A heartbreaking part of my mum’s condition is that it seems to be the earliest and strongest negative memories that are most often accessed at times when she is anxious. This takes me back to the inspiration for this blog, Lenny Henry’s brilliant portrayal of ‘Cyrus’ who is now old and has dementia. Cyrus is frightened and although he is at home in 2019, his mind takes him back and he imagines that it is 2011, and the riots in London are raging outside. His confusion becomes apparent as he muddles time, his mind harking back to a frightening racist attack on his friend.

This story reminded me so much of the experiences of my mum when she is in the midst of an ‘episode’. All of her past memories jostle together to come to the fore. I remember sitting with her during one such episode, and her sitting on her hospital bed picking at the covers, imagining mice and rats poking their heads out from places around the ward – touching my arm to say “there did you see that one?” One of her biggest fears are rodents of any kind – and always has been. I remember how some children that she was babysitting found this out, and managed to stay up much later than their allotted bedtime by telling her they had got their gerbil out of its cage “You can’t come in Mrs B” and she was too frightened to go into their bedroom. How frightened must she have been in that hospital ward, as her brain was seeing those mice and rats around her in a place that her daughter was declaring was ‘safe’.

On that same hospital stay she started becoming very agitated at the elderly lady across the ward in the bed opposite. “She staring at me. She’s looking down her nose at me. She thinks she’s better than me.” I tried to reassure her that the lady wasn’t looking at her, that she was just poorly like her. However, in a motion that belied her ill health and crumbling spine, my mother leapt out of her chair, rushing across the ward, pointing her finger at the bewildered woman: “ I am entitled to be here you know. I am British. I am as good as you”. I took her by the hand and sat her back on the bed. She was shaking and crying “I am British. I do belong here.” I was shocked by the vehemence of the words. I was struck by how frightened and vulnerable she was. I realised that what I had witnessed were her deepest and darkest memories coming to the fore and I was sad, so sad. We have seen it more and more, this behaviour where she thinks people are attacking or taunting her because of the colour of her skin. The mental health team label this ‘paranoia’. However, for me these are real happenings for her, a culmination of all the memories of racist abuse that she has kept at bay for so many years by ignoring or walking away, despite deep-down wanting to shout and fight. What she is living now are memories from the past – rather than spinning the threads they unravel and we watch with sadness as the fabric becomes frayed.

Alzheimers is a destroyer. As it deconstructs the brain of those it attacks, it takes not only their memories but corrupts the memories of those that stand and watch the gradual demise. My sisters and I stand together to try and mend the threads, to weave them around her and keep her safe, but there will always be a hole where once she bound us.

I will publish this blog but not share it in my usual way, not because I don’t want others to read it and understand, but because it feels too close and too real. I know that one particular person will read this and understand – she has been with me on so many of my journeys since I was small, holding my hand – and for this I thank her.