These days, I am noticing how memory can be both selective and forgetful. It chooses carefully what it hides. Sometimes I wonder if we only remember those things that are important to us. What is important to us can be different from what others think matters. My mother does not know who I am. When she wakes, I will tell her again. ‘Hello, Mum,’ I will say. And then I will introduce myself. It helps to know who is there at the start of a day, and to be reminded where it is that you are staying, if the bed feels unfamiliar. Even after I repeat my name, often she will forget who I am a few minutes later. Every day our journey is different from the one we made the day before, but always this is the same. Later, when she says, ‘I’m sorry, but I don’t know who you are,’ we start over, and sometimes I wonder if it is more important for me that she knows who I am than it is for her. But it doesn’t matter because, already, I can see from her face that she is thinking of something or someone else, and the moment is gone.
In all my life, I have never heard my mother say, ‘I love you.’ I long to hear her voice these words. As a child, I used to have a problem shaping my mouth around them each night before sleep. I had a terrible stammer that came on when I was stressed, which, at home, was often. I think it was born when those words of love did not come: at six years old, I stuttered only on the sounds I, L and Y. ‘I love you’ is an avowal, but in my heart it was a question. Every time it is meant as a question and does not find an answering echo, it gets harder to say.
Now, when I look at my mother, I realise the sadness of it is that ‘I love you’ cannot be a question. If you hear these words in response because you are asking to hear them, their significance is diminished. Love is a gift. You cannot ask for it. It must be given freely.
It has been difficult to arrange for my mother to stay here. I have done everything I can to make it possible. At home, in the family house where I grew up, there is a finely tuned list of routines and round-the-clock carers. My mother decided years ago that she would rather stay in the house where we grew up than close to where any of her family were then. We fixed accommodation near each of us, to make it possible, but she refused it all. ‘I want to stay here,’ she insisted, and that was the subject closed. I have always understood and respected her decision, yet it makes life infinitely more complicated, and her deterioration harder to manage as a family. Yet in other subtle ways, I know it is the only solution, because she has lived in that house for over fifty years. It is her home. It means that even if her mind is not always certain of the finer weave of each day, her physical body knows where she is and where to go. I think I can relate to this. It must be like searching for markers in the dark, tapping your fingers along the walls when the power cuts out. In the darkness, my body is now able to read the physical space of the croft like invisible Braille, and my feet know where they are going.
My sister is anxious. ‘Five days, or it will be too much for her.’
‘But I would like her here for two weeks,’ I say. We argue and deliberate, and it is all the more difficult because we rarely speak to each other.
In the end, we compromise, and she comes for a week. I am excited, and yet I am nervous, too. In addition to her illness, my mother is nearly blind. It means this week we will be inseparable, and I will need to provide round-the-clock care. Not only am I glad to do this, but I know I need to do it to make my peace.
My house is not conventional. It has steps and hidden corners. So I must be always there in case she falls. There is still much that remains unfinished. There are none of the usual cupboards, utensils and furnishings of a modern kitchen or house, but it is honest, if rough at the edges. ‘We will manage,’ I say. ‘I will do my best.’ My mother needs help with dressing, daily hygiene, washing, preparing food and being reminded to eat it, alongside the countless small aspects of care.
She can be given only so much leeway before threads fray. When you have Alzheimer’s, life’s missing pieces can make you vigilant and alarmed. You can spend all day searching for something you sense you have lost. Eyes wide, hunting for whatever will fill that empty hole. Only then you can forget what you are looking for, and why you wanted it. ‘Here, take this,’ I say, when I see fingers start to burrow in her handbag. I would love to take that bag away from her, but it is like a child’s security blanket. It makes my mother feel safe knowing it is there. Sometimes she forgets it is close by, so I have to remind her. It is strange how a bag can feel as alive as a breathing person sitting next to you.
Whenever I can, I give her something to hold. Gently, I wrap my hands about hers. ‘Look, isn’t it soft?’ I say. And then she relaxes, and smiles. ‘Yes, it is beautifully soft.’ Her hands explore it closely and then look at me in wonder. And together we stroke whatever it is. A teddy bear, a favourite cardigan or a cosy, woollen hat. It unifies us in that moment, sitting there in front of the fire. And I am grateful for this. Because in the end, all we can try to offer to each other in life is compassion. In the end, there is an infinite number of ways to express and know love.
It is not easy caring for someone, but every minute is precious. Washing is difficult, as is brushing her teeth. I wish I could tell her, ‘I have not experienced what you have, but I think I understand.’ I remember having trouble with all the basic routines. There was a time, when I was struggling with my mental health after so much shattering loss, and the pain and hardships of living in a hostile environment, when sequencing, reading and speech defeated me. My memory was shot. I forgot the smallest and biggest things. I was unsure of myself. Some part of me, ragged and broken, shattered into sharp splinters of glass. I now understand how the most mundane aspects of a life can be not only frightening but desperately confusing. I want to tell her, ‘It’s OK. We will get by.’ But I know to say only what matters. So I tell her, ‘I love you. I am here.’
Alzheimer’s teaches you to be economical with words; the value of language. I do not want to ever have regrets that I did not try. Each night, while she is here with me on the croft, I know to reassure her. I talk to her, hold her hand, tuck her up in bed and switch out the light. It is like looking after a little child. It fulfils a need in me that has always been waiting to provide these gestures of love. It is baffling to feel so happy and close to tears over something so simple. With my mother, I am able to care for another human being in a way I have always longed to. Such small contacts can forge memories that will last a lifetime.
I must anticipate her needs. The night of her arrival I did not tuck her in, and she lay uncovered on top of the bed all night. It scared me to see her lying there, shivering and desperately cold, in the morning. She did not understand that she needed to get in under the duvet, blankets and sheets. The thick stone walls of the house make it much colder than she is used to. I keep the fire burning, piling it high with logs and coal. The stove sounds like a dragon. A thick heap of blankets and throws sits on the sofa and armchair. I pull them closer to the fire. It is only by reaching out and touching her hands that I am able to check if she is warm or cold. It also tells me when she needs to eat and drink. You lose heat when your blood sugar drops. So every few minutes I hold her hands. It is a link between us. It is a joy to me to have this excuse to hold her. Now that she is ill, she does not pull her hands back. She does not shy away. Sometimes I wonder if she remembers there was a time when she did. This does not matter any more. It makes me sad, but at the same time glad that I have this physical closeness now. And when I realise I do not need an excuse to touch her, it is a revelation. She is my mother and I love her, and hands are made to be held.
I am getting to know my mother as I have never known her before; getting to know the part of herself that she never showed to me. She is so different from the mother she used to be. And that, too, makes me both sad and glad. And confused. I feel guilty because it is illness that is giving my mother to me in ways she was always absent. Alzheimer’s can be like that. It can construct a unique present out of frayed threads of the past. Its pattern, its warp and weave, is often
different from the one we knew.
Everyone’s experience of illness is different. Memory loss is devastating but, for all its heartache, it allows me to talk to her more intimately than I ever did before. It frees her in ways I never thought possible, gives her permission to do things differently. One morning, we are washing up and I drop a mug. My hands are less responsive since they were broken, and I am always dropping things. I practise each day to strengthen them and to master tasks that I used to take for granted, but I know they will never be the same again. Simple actions can still be difficult. Holding crockery, fastening buttons, turning pages or opening lids.
I watch as the china mug smashes into bits on the floor. I do not react. Most of my crockery has chips, or ends up in pieces being used as drainage for potted plants outside. But my mother does. She laughs. ‘Fuck!’ she shouts, and then she laughs again, as she sings out the word over and over, and starts to dance. She twirls around the kitchen, and suddenly I am laughing and dancing with her. It is a beautiful moment. Afterwards, as we wipe our tears away, I am inexpressibly happy. I hug my mother tightly.
Time has unravelled the last few days. I am out of sync with the routines that normally anchor my life with an easy rhythm. But it does not matter. It is a priceless gift to have this time with my mother, uninterrupted.
It is a benefit to have her here in other more subtle, invisible ways I had not anticipated. Her presence gives me something in common with the rest of the community. They see that I, too, have family ties, close kin in need of my support, and that seems to matter. It makes me less strange. I sense I am being perceived in a different light, one that may lead to the smallest shift or thaw in relations, through simple exchanges, prompted by interest or mere curiosity, when we are out and about or at the shop. ‘Is that your mother?’ is a welcome invitation to engage, no matter how briefly. Her illness is apparent, as is my care of her. Just being seen at a distance, walking slowly hand in hand with her, places me in a familiar context. I can feel that I am being reappraised. I realise how making this connection may be important to others. And how important their reappraisal may be for me, too.
On our last night, my mother and I sit together, the same as always. We are wrapped in blankets. The house is not warm, but the fire is lit and the stove is cooking a hot supper. I have dug out a cardboard box of photographs. Old, faded, white-edged prints. I hand them to her so she can hold them as I describe them to her. As I pass each small square to her, my mother’s eyes light up. For a few minutes, she is lost in the past. I look at each of those strange images, family pictures of my childhood. We stand alert, separate, each in our own space, staring out at the camera. Pale faces; eyes wide, fearful, silent. I know my brother wants to stand closer, but he is wary, alert. He would keep his eyes fixed on the door because when trouble starts, even if it’s your sister who is getting knocked to the floor, you run. It makes me feel happy and sad to revisit those days. It is my childhood. At the time you just accept that this is how life is.
‘What is it like,’ I ask my mother, ‘right now in your head? Please tell me. So I can help you. I want to try and understand.’
She thinks for a moment. ‘It is like you are living in a world with no connection to anyone or anything. It is lonely. It is like nobody is there.’
I need to understand why my childhood was so unhappy and difficult. Why such a vital bond was lacking. I do not know why it matters after so long. But it still does. I wonder if perhaps it is because, regardless of how much time has passed and how old you are, something inside you will always be the child you once were. With my mother, that part of me still reaches out shyly, arms opening, waiting for her approval and love. Love and validation forever inextricably entwined. It is healing to know that now she will not turn away.
As a child, in the absence of comfort, I used to turn to my favourite tree. It stood strong, tall, dependable, reaching its branches out to me like waiting, open arms outside my bedroom window. Waking or sleeping, I felt it watching over me. It saw my childhood through my eyes. Each night, I would wrap my hands around it, press my lips to its bark and pour out my secrets and sorrows to it. It helped to know someone was listening. It was the first thing I saw as soon as I opened my eyes. It may sound strange, but I am convinced that beautiful presence looked after me. It helped me in ways that adults could not. It taught me the importance of wild nature young. When you have nothing else to turn to, you learn it helps not just to bury your pain. It helped me to look up to the sky and to find comfort in quiet, living things.
I know I cannot ask my mother all the questions to which I need answers. But there is one that I will always regret not asking if I do not try. I have imagined so many times how the scenario might play out. I sit closer. I take a breath. I do not know if she will admit to it. I do not know if she will even remember. It is hard to ask your mother why she looked away.
‘I did not know,’ she tells me, her eyes wide, staring at me.
‘But how could you not?’
‘It never happened in front of me. I never imagined he would hurt you.’
My face flushes. It is confusing. The truth is, I can understand how her memory has fashioned a narrative she can accept, because in my head I, too, have erased those sights and sounds.
As we sit in silence, I hear myself say, ‘It’s OK. We are here now.’ My eyes fill with tears. For those few fleeting moments, her mind runs in a beautiful clarity. We look into each other’s eyes. I know she sees me and I see her, exactly as we are.
I want to ask, ‘What did you think when you first looked at me in your arms?’ My mother once told me she was not ready for me, and resented my coming into the world. Those words have stayed with me, yet in my heart I know it is not her love that is in doubt, but her willingness or ability to express it. If I ask her this, it will be a wasted question. I will simply be asking her to express a version of her truth that I can better understand.
I wonder then if I should ask about her relationship with my father. But I do not, because I realise that I do not want to know. Her love for my father is not mine.
I want to ask, ‘Were you happy in life?’, so I can understand how she sees the world. But she has always been a private person, and I don’t want to diminish her by taking away that part of her nature.
The hardest question is the one I cannot ask. The one that is a distillation of all the rest. ‘Mum, did you really love me? So if anything more were to happen to me, you would stop it, because otherwise it would break your heart?’
In the end, if this is all the time I have left with my mother, I do not need to ask her anything. Because in my heart I already know everything I need to know. When you have your mother back for a few moments, it is too precious a time for words. So I just hold her.
4
Earth
The grass scratches my bare legs as I lean heavily on the gate. As the latch lifts, my hand sends the bolt swinging. I look back over my sun-freckled shoulders, sweat running into my eyes. The light is flat, so the glassy air shimmers with a dry, crackling heat. It is full summer, the rough heart of the year, and the sun-parched earth is gasping for moisture through its hard crust. Over the past weeks, the shallow springs have gradually run dry. The grass is blackened and scorched beside the baking rocks. Even the silver ash leaves are wilting. I have risen early to gather in the ewes in the fresher dawn for the shearing. But already the heat is intensifying.
As I walk the ewes quietly by the low stone wall that runs along the west march line of the croft, the foliage canopy provides scant shelter. The air is thick with their rasping breath, their flanks panting, flaring nostrils pink and blowing. At their feet, Maude gasps in staccato bursts, her tongue lolling sideways out of her jaws. Forty-six fleeces are to be shorn off these heavy, sweating bodies. Already, the sharp tang of lanolin sings high and a warm, sirocco wind is wafting across the croft, steeping the air in dust, fresh dung and acrid urine. I pour a bottle of water over my head and splash my burning face.
The barn is not big enough to hold and shear stock in these numbers. The fank has always been used for this job, and that tradition has meant I have never considered doing it any other way. But stringing the heavy machinery over a makeshift frame and ensuring that it is adequately supplied with mains power is a challenge, and I need help to do this. The fank is surrounded by tall trees, but, with no overhang, to provide a stable framework I need to use these huge long ladders which have to be dragged out from the hayloft. The resulting construction looks both precarious and magnificent, if only for the sheer enormity of its scale. When it is ready, I pull myself up the twenty-foot ladder to fix cables to the trees so it is safe to switch the power on.
Above my head, the primitive, square assembly frames the clear sky. At first glance it may not look very sound, but I have made sure that it is tied tight with baler twine and secured with double knots. You do not hope for the best at the shearing. No one fools about with razor-sharp cutters once the whirring motor is on: it matters that you get everything right every time. The shearing cables are draped through the trees, connected to the power by a black cord snaking to the fuse box in the barn. The engine is old and cumbersome, but it starts smoothly first time.
At last I give the thumbs-up to the young farmer standing below. ‘All set,’ I call. He nods, rummaging through the heavy bag at his feet. Carefully, he pours oil on to the sharpened cutters and combs. I appreciate his help. I would love to do the shearing myself, but it is a highly skilled craft which I am not trained in and cannot manage. Sometimes you have to recognise what you can and can’t do. For years this was difficult for me, because I felt I had to do everything. It is a relief to lay down that burden and to feel able to turn to others, to offer and accept help in equal measure when and where it is needed, as those who work the land have always done. These exchanges still usually take place within families or other close associations, but I always pay for the help I receive. It makes it easier to ask for assistance and sets firm boundaries. Good fences make good neighbours.
I Am an Island Page 23