The Greying Wood of Trees, A Dementia Anthology by Lynda Tavakoli

Lynda Tavakoli

The Greying Wood of Trees

A Dementia Anthology

Photo credit: Sam Tavakoli

Lynda Tavakoli

The Greying Wood of Trees

A Dementia Anthology

Copyright © Lynda Tavakoli 2024

First published by Lynda Tavakoli

Ireland

All rights reserved.

No part of this publication may be reporduced or transmitted in any form or by any means, electronic or mechanical without permission in writing from the author and publisher, except by a reviewer who may quote brief passages in a review.

Cover image: Tree Head by Irish artist Emma Barone

My sincere gratitude to Emma for her insightful and empathetic artwork.

Photo Credit: Lynda Tavakoli

Dedication

For those who during the pandemic could only touch through glass, and for my family, with love.

Lynda Tavakoli

Photo credit: Lynda Tavakoli

Introduction

The idea for this book had been rummaging around in my head for some time before I eventually put thoughts into print. It often seemed to me that the task of connecting together all the relevant material was just too daunting and the natural progression of the narrative too depressing, so I almost shelved the whole idea several times. Then, I came to realise that I was misguidedly concentrating on outcomes (the death of three people whom I loved), when I should have been focusing on lives well-lived, before the vagaries of old age arrived with all its many challenges.

This is essentially a book about relationships. The content of these pages reflects moments of sadness, culpability, trust, acceptance and love within my own family, where old age took hold like ice crystals penetrating a pane of glass –each contrary pattern evolving at its own speed, direction and time. My father, mother and maternal aunt each succumbed to the frailties of old age in its different forms and this is my attempt to give an honest account of their stories in a way that will offer some insight into how families endeavour to cope. Sadly, dementia played a big part, which is something that can’t be ignored or swept under the carpet, and because there can be much sadness and emotional distress involved in any dementia journey, it is often difficult to unearth some of the more uplifting moments. However, those moments can and do exist, albeit fleetingly at times, and the transcripts of my mother’s and aunt’s childhood reminiscences are a reminder that such recollections are important and necessary when short-term memory has almost completely gone.

Some things are not easy to return to. Although in the past, I have used poetry and prose as a means of expressing my feelings about ageing, it was only when I re-visited the scrapbook, jotter and diary entries that make up a substantial part of this book, that I appreciated how difficult the writing of it would actually be. Yesterday’s truths laid bare in black and white evoked in me a huge sense of emotional guilt about what I could have done better. Yet, much of what happened within these family relationships I would not change, and if there is any meaning attached to what this book contains, it is to know that in times of great trials we can only do the best we can, and to hang on, as much as we are able, to what is good.

Lynda

Tavakoli May, 2024

ONCE

(a fictional short story *)

It’s quiet in this place. All I can hear are the bones of the dead whispering to me from the ruins of the poorhouse, whose fallen gable wall I can see easily from where I sit. The elements have done their work across the years, gorging out the integrity between bricks, eroding any history that has lain dormant in that now empty space of rooms; but that does not prevent me from remembering. No. Remembering has become my saviour and the lynchpin that protects my sanity, for the old (and I am indeed old now) are the lost of us and we, the lost, must cling to what we can in order to survive.

My mother brought me here when I was not much higher than her knee. The place was in the townland where she had been born and we were visiting, on foot, a poorly relative not long, I recall, for this world. We passed the old workhouse on the way, standing then as it is now, beside the banks of the Blackwater, whose eddies sucked the brown darkness into itself as though needing to justify the name. The building had, even then, been derelict for some time, although every wall was still intact and the roof saddled itself comfortably over any existing trusses. When we stopped, I could feel my mother’s softness squeezing my palm, her heartbeat pulsing at the tips of her fingers, her love for me like blood, coursing its way from one of us to the other. I raised my chin to look up at her, waiting for her words patiently, for she was apt to think long before offering them up, and shortly the reward came in a way that I could not have then expected.

“Listen,” she said, her lovely hazel eyes fixed upon my own. “Listen to them talking to us, Dora. Can you hear?”

I listened, pressing my ears out towards the surrounding space, as much to convince myself that I could share with her something I did not understand, but all I could hear was the river’s rush over rocks and a soft low of the cattle coming from a neighbouring field.

“No Mama,” I answered truthfully, knowing what she meant. “I don’t hear anything”.

She was standing now looking upwards toward the high row of windows that had long been blinded of glass, and to the chimney that shocked its way through the beleaguered roof.

Releasing the grip on my hand she pointed out towards them. “I always wondered about the children,” she told me, “and how they would have slept top and tail with one another, squeezed in rows. We’d see them on our way to school looking down at us with their bare eyes.” I could not envisage my own mother of an age so young as to be going to school but I nodded anyway. It seemed important that I allow her simply to utter the words.

“Afterwards, when it closed, a lot of them were buried over there,” she continued, nodding towards a thin copse of trees on the far bank of the river, “in Bully’s Acre.” And with that, from her mouth came such a sigh as could have saddened even a stone’s heart. “Our family was never so poor as to not be able to look after each other,” she added.

It is strange the things we choose to remember. And those things, too, that we decide to forget. As I sit here now in this quiet, lonely place recalling my mother’s words and looking out upon the ruined workhouse, I feel the presence of those children so intensely it sends a shiver through my heart. Perhaps it is the curse of old age to carry with you the burdens that you could not suffer as a child but there is no guilt to it, nor should there be. What was before has now become the present and foolishness lies only in failing to learn a lesson from the past. I hope I have the wit left in me still to believe it.

Today I wait in this new building that they like to call a ‘home’. Although they built it near the original site, it is as far from a workhouse as any place could ever be, with its white-walled sterility and state of the art facilities for the elderly infirm. No one but me can know the irony of the circle I have travelled to arrive back here, but I take comfort in the memory of the in-between, regardless of the regrets and sorrows on the way. A car scrunches up on the gravel outside and I see that my own daughter has come to visit, something I treasure, although it is she who put me here. It was a deed done not with belligerence but with a genuine desire to do what was right, yet knowing this does not give either of us the comfort that it should. I ought to be at home where I can heal myself with the familiar, but I will not ask for it as a rebuttal will only pain us both.

She comes in smiling, but behind those green eyes is a look of abandonment impossible to conceal. It is not for herself but for me and I do not know how to respond to it except to welcome the warmth of her embrace as easily as I succoured her when she was a child. The others here stare over and a woman nearby weeps suddenly without restraint, the white spit from her open mouth fizzing as it settles on the carpet near her feet.

My daughter moves quickly with a tissue to mop up the mess stroking the woman’s hand as she moves away and I am touched by this small act of kindliness towards a stranger which was neither asked for nor expected. Then she returns to sit on the arm of my chair saying, “I hear they have a cat like yours here mummy. They’ll let you stroke it sometime, if that’s what you’d like.” But I don’t like. It will only serve to make me miss my own PussPuss more than I already do.

“It’s okay,” I lie. “I’m not that fond of cats really.”

Through the window a sky of washed-out blue is troubled only by the smoky contrail of a passing jet. It triggers a memory of the Spitfire pilot who wooed me during the war; dashing and arrogant in equal measure and quite a catch for a farm girl such as me. Yet it was a sweeter, gentler and much poorer beau I eventually chose and the half century that we were wed somehow proved my judgement true.

“Let’s take a walk outside, mummy.” It’s my daughter again, gathering up my belongings and taking my elbow to prise me from the chair. How tired these old bones have become from just the sitting and looking; but I do not resist. It will actually be a relief to feel air that has not been tainted by age like an overly- matured and vile smelling cheese, so I allow myself to be led to my room and collect my coat. At the main door we wait to be allowed out, another irony when I think of all the post-it notes the family stuck up around my own home. Bright orange and yellow stickers issuing little warnings such as: Don’t forget to lock the door! Don’t let anyone in mum unless you know them! Now they’d prefer that I just didn’t escape.

The fresh air helps me to feel a bit more like myself. I enjoy the slow walk down past the workhouse (although I do not allow myself to look this time) and over the bridge to where there is a plaque hung rustily on an old gate. It reads: ‘Bully’s Acre. The burial place of the poor of the district - in memory of those within.’ We have read those words many times, my daughter and I, but in truth every time is like the first for me and it is now almost too much for me to bear.

“I’m done,” I say simply, squeezing my daughter’s hand and feeling the warm pressure that returns it. I try not to show that I know she is crying. We walk on further until the silver birches shade out completely any rays of the diminishing sun, and stop where the moss under our feet ensures that any footfall will remain undetected. I like the idea of it; this spongy bed where once they have softly fallen, those folk whose kin could not look after them.

“Can you hear them?” I ask, knowing by the look in my daughter’s face that she does not. No, she cannot hear the voices yet. But she will. She will.

Daddy (Harry), 1948.

‘Father, you are the bendy beech, drawn from a Fermanagh bog, a sapling twisting your resistance into a foreign home where I transported you, just to have your presence close. At your feet a boot of snowdrops kicks the winter into spring, and from your branches, fingertips of bud await a summer’s touch before they flare. And when I listen, cheek pressed close against the roughness of your bark, I hear the rising sap of who you are speaking to me through the quiet earth.’

From the poem ‘Garden’ in ‘The Boiling Point for Jam’, a poetry collection by Arlen House.

Daddy (Harry)

My father was a man of immense kindness and integrity but I did not appreciate the importance of these qualities until well into adulthood myself. I was a difficult teenager, angst-ridden and self-pitying for most of the time, and I didn’t try very hard at anything in school, except for playing sport. Looking back on it, both my parents showed a level of tolerance and lenience towards me that I never should have expected.

Dad rarely spoke about his own childhood, growing up as the youngest of ten children on the island of Inishmore, between Upper and Lower Lough Erne. By all accounts, life was very tough and there was little opportunity to further his education beyond the age of 14, which is when I believe dad left school. Later, during the war years while working as a policeman, he inadvertently met my mother, whom he stopped for not having a light on her bicycle. Their ‘going together’ continued until dad decided to follow some of his elder siblings out to Canada, but he returned eventually to marry mum, and they remained in Northern Ireland from that time onwards. All in all, they were married for almost half a century.

Although, as a family, we lived in the sizeable town of Portadown from Monday to Friday, weekends were spent back at the home farm on Inishmore, the place I came to realise, that shaped much of my subsequent writing. After dad’s retirement, he and mum continued to spend a lot of time there; the nurturing comfort of nature’s endurance giving them a continued purpose for their journey into old age. Sadly, it was short-lived, as dad succumbed to multi-infarct dementia, and his life as he put it to me once, was ‘torn asunder’.

My Father’s Hands

My father would take an axe and cut in just the right spot, until, with one touch of his finger, he could fell the whole tree. He would spend hours polishing horse-brasses and all our shoes, before arranging them in regiments beside the back door. The day he went for tests I watched him stop to smooth the dog; his hands were butterflies.

Jean James (my sister)

Dementia and my family

It’s impossible to pinpoint the moment my father began to suffer from dementia. Nobody in the family questioned any momentary lapses of memory from time to time and even when these became more frequent, I don’t think any of us really understood the significance of what was happening. Certainly, that word dementia was far from our thoughts at that stage.

When dad retired, he and mum had gone to live in a small Fermanagh village close to where dad had been brought up, the youngest in a family of ten children. He had a great love of the countryside and took delight in taking walks with Daisy his collie dog, happily passing the time of day with anyone who had a mind to. Fermanagh was often wet and cold but he was content to have gone back to his roots. It was his idea of what a retirement should be - living in a place he loved, with someone he loved, and having the time to enjoy it. Sadly, his contentment was short lived.

The first time I ever heard the word dementia mentioned in relation to my father was when he was hospitalised after a TIA (Transient Ischaemic Attack). As a lay person I was unfamiliar with the medical jargon but quickly realised that dad had suffered a mini stroke. He was to suffer more in the course of his illness. It seemed that the problem stemmed from the carotid artery being ‘furred up’ and restricting the blood supply to the brain. The neurologist told me that aside from this, my dad’s brain was shrinking and there was little they could do about it. Then that word – dementia.

People joke about it. Remarks about dotty old aunts going cuckoo and being and being demented are all commonplace. It’s always easy to mock when something doesn’t affect you personally. I don’t find it that funny anymore.

When dad returned home from the hospital, he understood the explanations that had been given to him by the medical profession. At the time neither he, nor us, had any idea about how the disease would progress. Mum and dad had been married for nearly fifty years and had always had a loving relationship built on mutual trust and respect. I can’t recall ever witnessing them having an argument. But gradually you could see that mum was doing that little bit more for dad and he was becoming that bit more reliant on her. You could tell that the balance of their relationship was changing.

I had always found in my own life, that during a crisis I coped better if I educated myself about the matter in hand. When I was diagnosed with cancer I selectively read many books on the subject and it helped me enormously during and after my treatment. It was no different with my father’s illness.

I learned, surprisingly, that dementia comes in different forms. Alzheimer’s is the most well-known but there are others, like multi-infarct dementia, which is what dad had. Instead of a gradual decline in his health, the illness progressed in a stepwise fashion which, to me anyway, was the cruellest blow of all. With each downward step dad seemed to have an awareness of what was happening, which was tragically the loss of that bright and alert mind of his.

My mum coped so well for so long. Like many carers she just got on with the job of looking after someone she loved. She never complained, although I’m sure there were times when she could easily have given up. But as the months went by and dad’s condition accelerated, the emotional and physical toll on my mother became increasingly obvious. Ultimately it became impossible for her to cope and decisions had to be made about the future. With the help of Social Services dad was accepted into a special unit for Elderly Mentally Infirm patients (EMI) in Lisnaskea. It was the most wonderful caring place where dad would receive both kindness and compassion in equal measure. The staff in any old people’s home has its work cut out for them and not everyone could do their job. I don’t think I could.

Dad was a genuinely good person all his life and even though he had a disease that affected his mind, he always remained considerate and polite. When I visited him, he would inevitably greet me with a smile and the staff would always remark on how kind and co-operative he was. The EMI unit itself was a clean, no-frills sort of place which, above all, was a completely safe environment for its residents. In my dad’s simple room with a bed, chair and a few personal items strewn about, I realised more and more how little material things really matter. It would have made not one button of difference had the surroundings been plush, extravagant and expensive. What mattered most was the compassion that painted the walls, not the decor.

Gradually dad began to go further and further away from us. They say that you can tell a lot from someone’s eyes and it’s true because when I looked into my father’s eyes he wasn’t always there anymore. I did not realise it then, but now I believe that this was the point I began to grieve for my father, and that feeling of having already lost someone when they are still alive is hard to come to terms with.

For me visits were becoming more and more distressing. I did not enjoy seeing so many other poor souls in the unit living in that same mental prison that had also incarcerated my father.

It was a stressful and difficult time and I was torn between wanting my father to stay alive and wanting him to pass away so that his suffering would be over. It is something that perhaps many people think but do not freely admit to. Realistically though, I knew that dad had actually been lost to us several years before when senile dementia had first taken its hold upon his mind.

Daddy died several years ago now and I miss him still. But having witnessed the debacle that occurred in care homes across the country during the corona virus pandemic, I’m relieved that he did not survive to experience such injustices and indignities himself. Where has our humanity disappeared to when the elderly (with or without dementia) are treated like they are an afterthought? So many families are suffering with the aftermath and all I can hope for is that they find some kind of comfort in knowing that their departed loved ones are themselves now, at least, at peace.

Dementia

(an early poem written about my father’s condition)

If I had one wish now it would be that God would be kind to you, for I can see in your eyes that this is not how you want it to be.

Those eyes that once were bright, alert and sharp, but now are filled with sadness and despair. I hate God for doing this to you –I need someone to blame.

For you have always been kind and gentle and do not deserve this end. This end that all of us are frightened of and for good reason, because it is so sad and so unfair.

It makes your heart weep and chokes you up inside to know that your dad is there in body and not in mind anymore.

But that does not mean I love you any less. I love you as I have always done, since I was a little girl, waiting for you to come home.

CHANGING GEARS (for

dad)

Me between the cradle of his knees, a chew of steering wheel on puppy fat, eyes, round as sixpences from the dare of a wide-eyed lane, my hand, parcelled in the plump pads of his own big hand, churning up the gears.

A decade later, when he taught me properly to drive, that passenger seat roar of his to brake – Brake!

An impatience of aging, the superiority of youth, the vow to my mother to never get inside a car with that man ever again.

There were things I never fully understood, his sudden coming home too early in the day, work keys tossed, their uses temporarily obsolete, the threat of being ‘burnt out or leave’ still thundering behind the surrender in his eyes, staff cars spared only because he’d done as he was told.

Then the serious stuff of family business, steered from the office of a bruised oak desk, the writing of cheques for our educationbe frugal, be kind, be fair, and that thing he knew most how to give away, chiselled from his own unspoken past, the sense of what was right and what was wrong.

Later, a slow shrinkage of the father we knew, hurrying slowly, his neck curved as though he’d spent a lifetime ducking under doors. And the final humiliation - you must not drivefilching his freedom and swallowing up the grim shadow of the road that lay ahead.

But there he is, with the wind salting his cheeks, an elbow slack on an open window ledge, spills of sunshine kaleidoscoping the windscreen. Now he has all the time in a very long time, freewheeling the highway and raking up the gears, finding that endings can sometimes be beginnings in disguise.

DEAD DOG

In a unit for the mentally infirm I offer you my love in the form of a dog so lifelike you expect its tail to wag or its soft muzzle to crinkle into smiles. It’s a collie – a she, a Daisy-dog to give comfort when your night-walls are soughed by the demented and God has forgotten the numbered password at your door.

I have seen the woman with her baby many times, its doll head bobbing on her ribs, the lullaby that sings upon her tongue a comfort only to the bogus child immured within those skinned and skinny limbs. She walks the ward oblivious to all but what contentment comes before the longer shreds of darkness that will swallow up her memory whole.

So, I tender you my good intent –this spurious gift I think will link an alien present with the familiar past but even then, with all that has been lost to you, you recognise its falsity. ‘That’s a dead dog,’ you say, the words raged from that part of you still holding on and holding on.

In articulo mortis

(a fictional short story *)

I open my eyes and see on the magnolia emulsioned wall opposite my bed, a clock telling me that it’s six thirty-five. Dawn light, or the dying rays of the sun, seep through the curtain crack and come to rest near the hillocks of my feet, underneath the blanket. Night or day. Winter, autumn. Old and young. Everything is the same. Everything is everything and nothing at all.

This is my life. It exists now mainly inside this room, yet here in this body and in this head there’s another life. I don’t speak often about it for I know there are few who still care but if you’re willing perhaps, you might listen a little to the ramblings of an old man shortly before he dies. I’ve shocked you? Then I apologise, for it’s not my intention to make anyone feel disturbed by my admissions, but time chases me and soon (perhaps even today) I’ll have stood my ground and allowed it to offer its final embrace.

Is this what I do now? Breathe and wait. And in between remember things that were never important before, and forget the ones that are significant now. Like when we sawed logs together, my daughter and I - the to and fro of the serrated metal jamming frustratingly because she kept losing the vital rhythm of the saw. ‘Thanks for letting me daddy,’ she said afterwards, her eyes screwed up with the truth of an 8-year-old or 28-year-old. Either way it’s of no matter anymore and it’s a wonder to me that I recall such an insignificant event at all.

Outside the keyless door with its stains and bruises telling their stories on the paint, life is rummaging around in the corridor. It reminds me of mice that holed up inside the wall cavities of my childhood; the busyness of their little rodent legs resonating through the plaster until the poison that my mother had set for them finally took effect. Then, a week of skunky stink that accompanied their shrivelling bodies before the final disintegration into the ether. In here, behind these creamy walls there are decomposing bodies too. No one believes me of course, but my nostrils don’t lie when they smell death, which is just about every day.

She comes in without knocking. Her hair is fakely auburn, only half tied at the nape of her neck as if she’d lost interest before the exercise was complete. She doesn’t smile much I remember and her name begins with a P - Paula, Pauline, Pamela or something. On the badge over her left breast, she’s identified as Patricia. “Hello Patricia,” I say. “Please come in.” But she ignores the sarcasm and heads straight for the window where the morning or evening light spills over my bed in great splashes as she pulls away the curtains.

“Good morning to you, Arthur,” she says. “It’s going to be a beautiful day.”

She’s directing her gaze not at me but out beyond the glass to a field spreading its muddied furrows into the far distance. I wonder does she see what I have seen there; my father, his back stooped over the plough as though a knowledgeable wind supported him, and Dan our horse, feathered legs straining with the puff and blow of exertion it takes for each channel to be deeply enough sliced.

“Yes,” she says again. “It’s going to be quite beautiful.”

Her back is as straight as a silver birch, the shoulders of the green overall sitting level with each other, but her head is tilted slightly to one side like my daughter’s quirky pose in old photographs. Just for a second, I wonder if it’s actually her but then the woman, Patricia, turns.

“You’re not like my daughter at all,” I say. It comes out like an accusation although I don’t mean it to be and she looks straight at me, a sunbeam haloing her head.

“And I didn’t claim to be Arthur,” she says back matter-of-factly. “Now let’s get you up and running, shall we?”

What do you think about being talked to like a child? What do you think I think about being talked to like a child? So, I tell her, “Don’t frigging talk to me like I’m some kind of retard.”

I expect her to tighten up in the way caterpillars do when you try to lift them, or at least show a reaction that offers a small glimpse of what’s really her. But her demeanour remains composed, and without the slightest hint of irony she tells me not to curse and to start behaving myself like a good boy. Not for the first time I notice that the colour of her eyes doesn’t match the colour of her hair. It’s confusing, don’t you think? She shouldn’t have black eyes with auburn hair - it just doesn’t make any sense.

“Your hair’s lovely,” I say anyhow. The clock is telling me that seven minutes have passed since Patricia’s unannounced arrival and I detect a fractional upturn at both sides of her mouth.

“You don’t mean that Arthur,” she says. “Yesterday you said my hair looked like shit.”

“Yesterday your hair was brown.”

The smile stretches to show her teeth, the front two overlapping just enough for me to think her reasonably attractive. She could be twenty or fifty-five and she should be a lot thinner. Her backside is rounded and wobbles slightly when she moves but her breasts look like they’ve been recently encased in concrete. The combination does something to my brain (you must have guessed that) and an irrepressible desire splurge along these useless bones in waves. If she is aware of it, it doesn’t show.

“My feet are not too happy,” I tell her as she pulls down the quilt and folds it untidily over the end of the bed. Then she looks toward my feet and I wonder why I said something so ridiculous. I’m ashamed of the blue veins drinking their way over the scaly scurf of each foot; of the misshapen toes kissing their reluctant partners, and especially I’m ashamed of the nails that are as bumpy and gnarled as the horns of a goat. You probably think they stink as well and you’re probably right but there’s nothing I can do now to cover them up. So, then she puts her hands inside the pockets of her overall and draws from each one a plastic glove.

“You could have been a magician,” I say, impressed.

“Let’s see these miserable appendages then.” She lifts my left foot with her two gloved hands, rotates it gently before doing the same with the other one. “No,” she says, “definitely not too happy either of them, but I’ve seen worse. We’ll sort it out later but now you’ll get me the sack unless you get your proper clothes on.”

It takes a good fifteen minutes to toilet me, wash my every orifice and start preparing me for the coming day. If you don’t know the difficulties of this then I imagine you are either young or have avoided contact with humans over the age of seventy. I hope you’re beginning to see this now.

“Who are you talking to Arthur? Half the time I can’t hear a word you say.” She’s got my arms above my head and is hauling off my pyjama top. I feel, rather than see, that my torso is the colour of watered milk.

“Nobody important,” I say and mean it. She chooses a clean shirt from the wardrobe and helps me put it on but has difficulty with the buttons because the plastic gloves are still sucking at her fingers like flaccid condoms. I wonder is she doing it on purpose. But before I can ask, there is a soft knock from the doorway and a small child pokes her head in through the opening gap. I say small child but in truth I know this other girl has been here with me before helping the P woman out.

She, too, wears an overall and she comes in shyly, her head tucked into her neck and her eyes towards the floor. I want her to lift them; to see her eyes and know that they suit her face because for some reason it really matters. She approaches the bed and makes the P woman jump.

“Jesus, I didn’t hear you coming in there, Wendy. You’re as quiet as a wee mouse.”

I did tell you that they were out there, didn’t I? But I want this one to leave because her presence will now have made me invisible again. When it is just two of us then at least I can pretend I exist.

“He always tells me off when I’m too noisy, Patricia,” says the interloper, her voice gravelled and low. “Sorry I’m late. It’s my birthday and I was out on the town last night, so my head’s a bit delicate today.”

“Happy birthday you,” says P for Patricia. “How old?”

“Seventeen and God, it feels ancient.” Then, even though her eyes are still lowered, she seems to notice me and asks, “How old do you reckon he is?”

“I have a name,” I point out, disgruntled, but this is ignored.

“Over ninety probably,” Patricia says. “But he hasn’t lost all his marbles yet.”

“That’s disgusting,” says the child and shivers.

“I mean his mind stupid. Now help me get him onto the chair and ready for breakfast.”

For the first time I see the girl, Wendy’s, eyes. They are the most unusual colour of bog-green with sparks of turquoise near the pupils. I’m reminded of a description I learned in school about the dark circular opening at the centre of the iris where light enters the eye. It seems prophetic somehow and although I don’t wish to alarm you again, I must say that the momentary fixing of this child’s gaze into mine has caused me the greatest elation. Don’t ask me to explain it to you more than that, for I’m unable.

Because there’s not much left of me anymore and there are two of them now, I’m transferred quite easily from bed to wheelchair.

In the time it’s taken, I’ve learned that Patricia’s husband is away doing something undisclosed across the water, her children can’t find work and are back living at home, and she’ll be heading off to her other job when she finishes this shift. Meanwhile Wendy’s boyfriend treats her well, her mother is dead and she’ll be starting further education when the summer ends. I want to tell them that I’ll be dying soon, that the world can be a pile of crap only if you give it the chance and that there’s a time to ask anybody’s god who’d agree to it, to motion you away.

Now, I’m in the chair and my feet feel happier having been freshly talced and socked up. I try to say thank you but what comes out is bound to sound like the someone who has lost his marbles who isn’t me.

“My world is torn asunder,” the marbleless person says. It sounds dramatic and archaic like words from Shakespeare or Chaucer or somebody as old as Methuselah but I realise that it’s coming from me in this room, right here at this very moment.

“What’s that Arthur?” asks the P person. “You’re muttering again.”

“He said his world is a sort of blunder,” says the girl with the beautiful eyes whose black pupils dilate and contract as she moves about the room. “Arthur. Isn’t that what you said? Tell Patricia.” I’m back to being visible again it seems.

“It doesn’t matter,” I whisper and start to cry, the tears stinging my cheeks and rolling into a fold in my neck, remaining there like droplets of dew that have formed within the well of a leaf. The girl lifts a tissue and soaks up the wetness as the older one turns her head away so that it’s impossible to see her expression, though I hear her say to the window and the field beyond, “He was so with it earlier too.”

The clock is moving its big hand over the minutes but time is standing to attention now in the sudden stillness of the room. It’s as if the trenches of the war have been transported to this spot and we’ve all been stunned by the sudden explosion of a mortar shell. Patricia’s discomfort forces her to break the silence first.

“Arthur, you know that your wife’s coming to visit today.”

“I know.” But who is this wife? Can you tell me?

“And she’s bringing your grandchildren.”

“Of course.” Do you know that the lies they tell you in this place are terrible?

“Can you understand?” It must be the older one still talking because the child has disappeared from the room, like a feather puffed away by a single breath.

“I need to see her,” I say, desperate.

“I told you; she’s coming later with the wee ones.”

“Not her,” I say, “Her,” and I point my finger towards the opened door.

“Oh, you mean Wendy. She’s gone to help with the others. Don’t cry, it’s upsetting me.” I make a grab for her arm but only succeed in snatching the tips of her now gloveless fingers. She jumps back, suddenly frightened.

“Don’t be doing that,” she says. “It’s not like you. Arthur, don’t you remember all the things you’ve told me before about your family; your life?” What a stupid person to think that I can go to that place again so easily, but I make an enormous effort to try.

“You’re very good to me,” I say, “but I need her to come back. I need her eyes.” It’s a clear thought, as clear as the sound of the Road Raider bell on my mother’s old black bicycle, but the woman’s face is showing a terrible disappointment or something else I’m failing to recognise. I know it’s pointless to say anything else and there’s a deep sigh before she speaks back.

“Right then, let’s get you on down for breakfast.”

So as the wheels of this chair revolve under me, I can tell you now that it won’t be long - the moment that frees me from this tortured life. For I’ve decided you see, and when I find her eyes and wither into the blessings of those dark holes, it’ll be soon.

Soon.

Question and Answer

You ask me how to live with the absence within you, and I stop before a photograph, a sheepdog’s white face, a bicycle beside a tree.

You ask again, and I walk in the garden my feet making prints, bright shadows on the grass.

And still you ask, so I say to you, each night we practise the art of dying, but in the morning open the day like a window.

Jean James

Her first driving licence photograph.

Mummy (Maude)

My mum was never one to complain, although I wish she had been. I wish she had admitted how tough her life was when dad was smitten down by multiinfarct dementia and I wish that, when she herself succumbed to the frailty of old age, she had asked me straight out, to take her into my own home and look after her. I still live with the guilt of my not asking. It is easy to look back with regret now of course and I often do, but I genuinely believe that we, as a family, acted with integrity at a time when big decisions needed to be made.

After my dad died, mummy continued to live independently in her small semidetached house in Fivemiletown, County Tyrone. She was a 5-minute walk from her older sister, Lily, and seemed happy within an environment that was familiar and supportive in terms of friends and neighbours. She had her garden, her cat PussPuss, her church, and her regular visits from family two or three times every week. She was loving and loved, gentle, kind and generous, and fiercely independent. But she was also vulnerable.

I suppose my brother, sister and I knew that it would take some kind of crisis for the status quo to be resolved. Mum was always adamant that, no matter what, she would not forsake the familiarity of home, even though there were times when she must have been aware of her increasing frailties and forgetfulness. She managed well for a while, with the many ‘informational’ post-it notes that we had scattered around her tidy semi-detached house, but she did, finally, allow us to approach Social Services to ask them for relevant support. During the last year that mum lived at home, we used jotters to help us communicate with the lovely home helps who provided care for mum and to whom we will be forever indebted. While re-reading the jotters recently, I was reminded of how important it was for everyone to work together and to keep the lines of communication open.

Then, the crisis that we all knew was likely to happen, happened. Mum fell and broke her hip. Even in the hospital, she was convinced that she would recover and return home quickly, but she picked up an MRSA infection followed by one UTI (urinary tract infection) after another. It was decided that there would be too much risk involved in returning mum to independent living and thereafter she resided in two nursing homes - the second very close to where I live. Although well cared for, her spirit had been broken and she died not many months after leaving her own home for a final time. The sorrow of her loss remains with me every single day.

Lisnabane

Transcript of mummy’s hand-written article for the family archives

I was born Rebecca Maude Morton on the 26th April 1924 at Lisnabane, Co. Fermanagh.

In January 1929 I had my first sight of our new home at Drumackin. I was nearly 5 years old and remember the excitement of it all.

My parents had sold their farm at Lisnabane, having bought this larger place in the townland of Drumackin, about 2 miles from Tempo in Co. Fermanagh.

The day we ‘flitted’ was dull and cold, and a neighbour brought my mother, my sister Lily, brother Sam and myself in his pony and trap.

As the hills (or braes) were steep and stony we had to alight from the trap and walk up them before we reached the house that was to be our new home.

I remember thinking how nice the house looked.

It was long and rambling, painted red with lots of white windows and outside there was a glass portico leading to a big kitchen and scullery with a lovely sitting room and parlour.

Upstairs there were four bedrooms.

The dwelling house was built near the roadside, across the road from the farmyard. The barn loft was especially of interest to me as there were steps going up to it, with a back door leading to the ‘black field’.

All the fields had names.

Our belongings were brought from Lisnabane by our neighbours in horsedrawn cart loads – my mother gave everyone a meal and Lily helped her.

Billy, my younger brother, was born a few weeks after we came to Drumackin. He was a big baby and grew into a big man.

Mum’s family at Drumackin

I CAN’T REMEMBER ASKING QUESTIONS

about your bicycle the black one with the basket where you put the tabby the bike with that tinny-voiced bell never loud enough to put fear into anyone not even the policeman who stops you on the road

I can’t remember your house with its singing name and ivy clinging to the walls where one day in June a family of six sit outside on straight-backed chairs to stare into a lens

I can’t remember the flowers foxgloves purple straight and freckle filled speedwell a thrust of blue through cracks dog roses a pink fleshed doorway frame

I can’t remember strawberries spread wild across the banks a tang upon the breath and mushrooms brought early from the fields a buttered melt upon the tongue

I can’t remember why I never asked

Jean James

Drumackin

There were 2 farms at Drumackin. The upper one was mainly grazing land and mountain, with plenty of turf banks that were cut by turf spades and dried out for our fire, and very good it was, too.

The lower farm was down by the river that surrounded the Quarter Meadows, so called because they were divided into quarters for each neighbour around. That meadow was beautiful.

Each summer, before the hay was cut, many wild flowers bloomed – bluebells, wild orchids, buttercups, violets, Loose Strife and Meadow Sweet were but a few. A kingfisher stayed around there for long time.

Sam, my older brother, had a great love of the outdoors. He fished in the river for brown trout and he snared rabbits – they were healthy and plentiful then and although Sam only got about sixpence each, it was pocket money for him.

Money was scarce in the 1930s and most people, including ourselves, were poor then, but we always had enough.

Mother made most of our clothes on her sewing machine. She also baked wheaten, soda and potato bread in an oven on the turf fire. Our parents were strict and we mostly did what we were told, to have respect for others and show kindness to animals.

On Sunday there was Sunday School to attend and we stayed on afterwards when Mother joined us for the church service and that took about 2 hours. Going home we mingled with the Chapel people coming from their place of worship and we all walked home together. Our church was at Tempo Church of Ireland.

Emaroo School

Our day school, Emaroo, was about a mile from home. It had 2 rooms and 2 teachers. Both were kind and willing to teach us. I especially enjoyed music, geography, history and drawing. It seems a pity that we could not have had further education then.

The Blacksmith’s Forge was at the bottom of the hills and we often sheltered in it coming from school. Sam, being handy, helped the blacksmith. There was a little planting of fir trees beside the forge and one Christmas we children wanted a tree. Sam was willing to cut it down, and when we arrived home our parents were very cross. We were made to go to our neighbour and say sorry, for it was his tree. He forgave us.

Spring and summer seasons were especially enjoyable on the mountain. The skylarks were soaring overhead and all around the cuckoos, corncrakes and curlews were calling. Birds’ nests were difficult to find as they were so well hidden in the grass and heather.

I wanted, for ages, to climb Killaculla mountain, a hill I could see in the distance from our bog, and one lovely day in May, Sam brought me; what a thrill it was to reach the top and look around the countryside. I was about 10 years old then.

Billy, my younger brother, was a big strong boy and he helped me build my dream house. It was outside our kitchen window, complete with a bedroom and big enough for me to get inside. I spent many happy hours there playing with my dolls for company. I had many pets. Our collie dog called ‘Daisy’, was very clever. Father had only to go to the gate and send her off for the cows –she seemed to find them all and bring them home for milking. Sometimes our horse, called ‘Dan’ would be with Father and I would get a ride on its back as he was very quiet.

Mother was fond of gardening and had many flowers and shrubs growing. Father had a large garden near the house where he grew vegetables and fruit trees. Sometimes, Mrs Howe’s goat from further up the road would break in, and what a row that caused – Father often threatened to kill the goat. I remember we also had bees. There was a spring well further up the road with lovely clean water. In later years we had it piped down to our house so our parents did not have to carry the water in buckets anymore.

We had the odd musical evening when we sang and danced. Father played for us on the accordion and mouth organ. There were often friends dropping in to join in the fun. I learnt to do Irish dancing in a house further up the road –that family was very talented. I used to watch the woman telling fortunes and reading the tea leaves in the teacups!

Changes came to us, as they always do. Lily was living away in England, near London with friends, when the war broke out with Germany. She was caught up in the bombing and later was sent to the country, much to my parents’ relief. I would have liked then, to join the Women’s Airforce but Father thought that one daughter was enough to be away from home, so I had to be content with a job in Enniskillen, about 10 miles from Drumackin. I became the owner of a brand-new sports model bicycle. It cost £7, a lot of money then. I loved that bicycle and got around a lot on it. About that time my parents took on the task of caring for 5 children, all from one family. They were evacuees from Belfast, having been sent to the country because of the danger during the war years. They stayed with us for years and afterwards still kept in touch. We called them our parents’ second family.

These are just a few good memories of Drumackin. I can think of some not so nice ones when we had storms and sometimes a lot of rain when the river would flood. We would have to walk a long way to and from school, and the crops were difficult to harvest owing to bad weather.

Sometimes, on a nice sunny summer day, I still return to wander about the mountain and again feel the lovely fresh air, thinking too, of Father and Mother, now long since gone, and of all the love and care they gave me. I know how good my life was growing up at Drumackin, and now, aged 66 years old, it’s still so very good.

*My mum and aunt always referred to their parents as Mother and Father. Later, we the grandchildren, also referred to them in this way and I am not entirely sure why this was, as it seems quite unusual.

Cold Tea

In the good room of our small bungalow, mum read tea leaves from china cups rescued from the Oxfam shop, her slight frame and unassuming manner a mere subterfuge for her divining skills.

There were rules - never on a Sunday and never in the company of my aunt. I don’t expect our dad much approved either, but he let it go, understanding that some things are probably best left undisturbed.

Believers came to swallow readings with the trust of any never on the Sabbath congregation and sculpted dregs of faith round porcelain curves. Prophesies of doom were subtly laid aside for Sunday sermons.

I sometimes wonder if she’d seen her future buried in the leaves. An arrow (never good news), snakes (the same), or wavy lines portending journeys unfulfilled. But if she did, it was for none of us to know, for that was not our mother’s way.

Looking back, I should have read the signs myselfcups of tea, half drunk and cold, perched on the bird table or teetering on bathroom shelves and once or twice abandoned by our father’s garden toolsthat sedge of herons she had planted by the pond.

It’s the way I like to drink it, she would say, the dare in her eyes always enough, and later, tea leaves carefully strained, I would present to her a sun, a fish, a flying bird and catch her smile, cupped in her hands the white lie of a daughter’s love.

Notes

from the jotters we used during the final year mummy lived at home 2010 – 2011

Monday: Mum – IMPORTANT – key must not be left in the door. Your home help needs to get in! There are sandwiches in the fridge for tea and nobody is staying with you tonight.

Thursday: *Keep the key out of the back door and don’t put the chain on.

Sunday: Someone coming to help mum get up. Helpline is now installed and working.

Wednesday: Tea time – mum – there is ham in the fridge, so please use it in a sandwich. Also, please eat the buns and sweets to fatten you up! Love, Lynda xo Thursday: ‘Taster’ meals arriving. These will be put in the freezer for you, mum. Money in envelope. Lynda will be back again on Sunday and George coming on Saturday.

Monday: I will come and help you get dressed, mum, and will make breakfast for you. Orovite. Lunch – heat up pie in the oven. Use can of peas (I will open these for you). Pudding in blue container.

Wednesday: Mum has a dental appointment at 12.30. Lynda wasn’t impressed by his bedside manner.

A Village Practice

I find him attractive in that young and self-assured dentist kind of way and I imagine, in my earlier life, there could have been a spark of something there. My mother waits in his chair, her brittle mouth only small. I am told to sit in the corner and I do, examining the cleanliness of the room, pondering how it cloys in the disinfectant spaces between us.

He prises apart her poor jaw, chooses a drill. The stickered soles of my mother’s shoes twitch with some invisible electric shock but the rest of her is numb, except her mouth, which is not. I am her voice and the palliative care of her crumbling teeth, yet I am reticent. It does not do to question authority, regardless of age.

And pain relief, I ask. The request an unforeseen tsunami across the room, a sudden game of Truth or Dare. She doesn’t need it. She does. She doesn’t. I cannot see my mother’s eyes but imagine them sealed, blanking out the embarrassment of my irreverence in this community where people talk. She does. And his slender fingers finally find a syringe.

In the waiting room muted exchanges churn around the lateness of the milking, or how the silage has seen two cuts already the year. We shuffle home, wordless. I want her to be proud of me for standing up for her but worry that I went too far. So, she makes the tea, her bent shoulders stiff in concentration. Good girl, she says. Good girl.

Monday 26th April 2010: Happy 86th birthday, mummy!

Lunchtime – re-heat meat from yesterday in the microwave to make sure it is piping hot. Use mashed potatoes that should have defrosted from the fridge.

Sunday: Teatime – pie, but don’t reheat please!

Monday: O on leave so M coming instead. M – could you please help mum to cook bacon and eggs at lunchtime? Many thanks, Lynda

Friday: Jean coming - YIPPEE!

Jean arrived and didn’t even get wet. The sun is shining. Lovely to see mum.

Saturday: Jean, mummy. and Lily had Denny’s sausages and Richard’s potato bread. Yummy!

Jean arranged a time for the Occupational Therapist to call next week.

Wednesday: Francis booked to come. Lynda arriving before lunch and staying to speak to the Occupational Therapist at 3 o’clock.

Friday: George is here. He will go on to Innishmore and be back by 5.30. George will get slices of roast beef for our tea together. He will check out the door-step tiles and sort out the problem with the TV.

Sunday: Lynda will take mummy and Lily for a drive. Sandwiches in the ice cream container for tea. Went to the farm and to daddy’s grave. Things should be okay for a day or so but could you have a wee look anyway please? Many thanks, O. PS Because of school reports etc I couldn’t get down last Wednesday but should be fine this week. Love, Lynda Wednesday: Farah and Lynda came – taking mum for a drive and then leaving mum to church.

Monday: O, please thank your daughter for cutting mum’s hair. Can you just check that mum has turned her electric blanket off please?

Friday: Jean and George arrived – sunshine and showers. Ham sandwiches for tea! Saturday: Jean still here. Sausages and potato bread for lunch and sandwiches for tea.

EAT UP MUMMY! Jean has put a new electric blanket and fresh bedding on the bed for mum.

Sunday: Lunch – Lynda will come and bring food for everyone. Mum – you don’t have to cook.

Wednesday: Physio booked to see mum today. Farah and Lynda came to make jam. Yummy!

Friday: George called at 10.15 am and will return about 6pm. He will make his own tea and prepare food for mum. If necessary, he will stay overnight.

Friday: Hospital appointment for mum at 10.45. Mum is with George and he will take them for lunch out afterwards.

Sunday: Lynda to stay over. Walked around the Round-O lake together.

Round the Round O

We walk the curves of the Round O on Sunday afternoons, the slow shift of sandals seeping my mother’s tired years into the gravel.

There is only the lake here now and an empty coffee house long boarded up and dead, a swimming pool weed-choked and indistinct, concrete belly slimed by its curse of neglect.

We have become the water’s outer skin my mother and I, skimming its surface like stones until the final suck pulls us under unlayering the bruises of our love.

Regrets secrete themselves unaware of what will come, but now it is enough to simply know the comfort of her shuffling feet and hear her say, ‘Remember to feed the dog when we get home,’

and me thinking of her cat waiting there on the sill behind a netted windowpane.

A page from mum’s jotters.

Sunday: Lynda came for lunch and took mum and Lily for a very wet drive! Sandwich in the fridge for mum’s tea. O – thank you for calling in again to check on mum yesterday.

Monday: A typical day of work for O - mum’s home help – Made lunch – mince and potatoes, rhubarb tart and custard. Started Maude on new tablet today. Made ham sandwiches for tea. Called back mid-afternoon. Checked on mum at bedtime.

Thursday: Hello O. George here. I just missed you this morning. I will be back about 6pm and will make tea for myself. Will you please prepare something for mum’s tea? I will stay overnight – tomorrow about 9.10 I will head down to Lily. Also tomorrow, I will get something for tea for mum and myself. See you later, George.

O – I made some sandwiches for teatime. Called at 4 o’clock. George, I will see you in the morning.

Sunday: Lynda came and had lunch with mummy and Lily. Took them out to the farm, daddy’s grave and then a drive around Tempo. Two sandwiches left from last night for supper. Gave mummy a pedicure!

Thursday: ‘Half Door Club’ for mum and Lily today. O will take mum to get her flu injection today.

Saturday: O – please give mum her ‘memory’ tablet at breakfast time – the packet is in the cupboard (under the jam jar shelf) above the fridge – Rimelyl.

Kitchen Comforts

Resistance hugs the small kitchen hiding secrets amongst gloomy cupboard space, post-war austerity brooding on strained shelves.

Empty jars wheedle their glass weight into the wood, its protest stifled only by the hum of a fridge –a magic fridge procreating eggs by the dozen their longevity evidenced only by an absence of feathers.

Plastic bags like artificial flower heads scrunch in hidden corners anticipating usefulness –receptacles for ashes and potato skins, swarf from box hedges, odd bits of wool waiting for the charity shop.

An Easter cactus prospers on a sill heedless of the pills that leave their tell-tale tips above the parched soil where she drove them in.

This is the place she planned her day, where through a kitchen window the dulled reminders of her life still resonated in the ordinary –a rose she’d slipped, blushing the oil tank in summer, the remnants of a forgotten meal, animal fodder on the lawn.

Nothing went to waste not even the birdsong wakening her at dawn that somehow hummed upon her lips for the remainder of the day.

Sunday: Took mum and Lily for a drive but it was very cold out. O – I’ve left £100 cash in the tin for miscellaneous items for mum. Please use when you need it. Hope to see you on Wednesday, all being well. Love, Lynda x Wednesday: George/O – I have turned mum’s blanket on at the main switch and all she has to do is press the control beside the bed. Maybe you need to go over this again?

Sunday: Lynda came at lunchtime. Big confusion over Lily’s spare key which I can’t find.

Wednesday: Thanks, O, for all your help. George, I’ve talked to Siamak about mum and Christmas. I’ll come down on Christmas morning, make lunch for mum and Lily and stay a while before going back home for a family meal with the kids later. Next day (Boxing Day) and weather permitting, Siamak and I will come down again and organise the food etc. But I’ll ring you anyway, soon.

Friday: Jean over visiting from Wales. Mum has got her £400 winter fuel allowance – it should automatically go into her bank account.

Wednesday: O called in to check on mum. Gave mum her ADCAL -D3 tablets and REMINYL. Checked that doors were locked.

Monday: Mum not well. Doctor calling at the house today. Mum given antibiotic for UTI?

Tuesday: Need to bring mum’s bed downstairs.

Wednesday: Contact with Social Services

Thursday: Medication that mum is on now: Reminyl tablets / Clarithromycin tablets / Adcal tablets / paracetamol / lactulose / co-codomol.

Mummy fell and broke her hip shortly after this last jotter entry. She spent some time in hospital and moved directly into a nursing home. She was never able to return to her own home again.

Done

Death bleaches into bone the smell of oldness secreting in the folds of laundered sheets.

Old Old Old

Your face reflected in the greying wood of trees and origami limbs a plicature of skeleton and skin.

You ask, ‘Is someone dying here?’ and to the silence add, ‘You’re good. I’ll keep you,’ the words your parting giftthe love you left.

Day Room Days

This morning the shell of you waits in the day room, a shrinking form more tortoise-like than yesterday. Nipped between finger and thumb, a biscuit, the warm chocolate already sculpting patterns into your grooved palm.

Hibernating eyes shift. ‘What’s this for’ you say, not even a question, and there are no words except perhaps the ones I should have said before they wouldn’t matter. Now they rain as shadows, puddling the space between us.

In this day room I must peel away the scaly layers of your casing to unearth some remnants of your life, the blessing of little things gifting themselves to memory, carving their shapes in my mouth like a river’s erosion.

And this I know –everything you gave to me, remains. For even as the particles of sand sift through their hourglass no grain is ever lost, and I will see you as you were, your tortoise shell shouldering me and shouldering me still.

Gone

Even now your warmth tortures me though you decided for yourself to leave without us being there.

And me, wishing you back, able only to stare at the hollow of your throat to a pulse extinguished suddenly to stillness.

For in the end, we are simply left with sadnesses, their shadows shocking as they cross the sun while in between remains the light that says life carries on, only because it does.

Moving Day

I moved my mother into our dining room her presence boxed and waiting for the final shift to a shed outside the pain of her absence stuttered my will to let her go black bags remaining empty of the detritus I could not throw awayshopping lists on paper scraps repeated phone numbers written in her tiny disappearing hand all about the house

‘Just in case’

Photo Credit: Mark Ulyseas

Requiem for the non-believer

I lost my faith one dog-damp afternoon in our mother’s sitting room, where her two-bar electric fire sizzled heat in the unfamiliar space of her leaving. On the sofa sat a man of religion taking notes, scratching empathy onto the blank pages of our mother’s life, his sacred scribblings setting out an order of service for her funeral. Psalm twenty-three; a reading from Corinthians 13; two favoured hymns; his own address about a life well-lived and dutiful to God. But the poem she had loved so much, denied.

She had found it in a book she’d read, when words had moulded shapes, like breath, around the contours of her mouth, their meanings sentient as any holy water tears. Listen to my footfall in your heart, it said, I am not gone but merely walk within you –a message redolent of all those Sunday sermons, steeped in Christian kindliness and understanding. Yet in that sitting room, it would not do to set a precedent, for even the departed faithful had to learn to play the rules. And so, I acquiesced and left the room, my apostasy finally complete.

Aunt Lily

Aunt Lily

Lily, my mum’s elder sister, and her husband, George, did not have any children of their own and my siblings and I, were essentially their ‘adopted’ offspring. When our own parents were not looking after us, then our aunt and uncle were, so we had the good fortune of having a kind and loving upbringing on many counts. After uncle George died, Lily lived alone in their small, two-up two-down house around the corner from mum for many years. To say that she lived a frugal life is an understatement and whatever spare money she had, was given freely to either charities or to the church; the latter playing a huge part in Lily’s life. When Alzheimer’s eventually took hold, she would not have been able to remain at home for so long had it not been for the unconditional and loving care she received from friends and church members. Eventually though, it was impossible for Lily to live on her own and that same decision my siblings and I had had to make about our mum, then had to be made about our aunt. The surprising thing about it all was her total acceptance of the situation, and never once thereafter did she rail against the upheaval that inevitably ensued.

Lily came to the same care home near me where mum had died a short time before and when I re-read the notes from the diaries we kept during that time, there are recurrent themes that arrive with regular consistency. Firstly, Lily was sustained by her unfaltering religious beliefs. She regularly told me that she wanted to die but that it would only happen when the Lord was ready to take her. Secondly, many of the diary entries involved mundane comments about the weather – rainy, cold, miserable, cloudy, wet … so rarely sunny, and each day crinkled into a kind of window box of mundanity. Thirdly, was the gradual loss of memory that was so easy to track through the reading of a memory book I had made for her. At first Lily could recognise herself in the photos, even when she was a little girl in a school photograph, but over time these recognitions disintegrated as the dementia strengthened its grip. The saddest times for me were when Lily asked where Maude was and I had to keep reminding her that mummy was dead.

Increasingly, my brother, sister, sister-in-law and I had to become Lily’s ‘voice’ and I cannot state strongly enough the importance of this. The care home had helpful and supportive staff, but there were times when issues arose that were not addressed nearly soon enough or that were, in part, side-lined. Thankfully, because we were able to visit Lily almost every day, we could keep on top of these things, but for anyone who lives far away from a relative, it would be well-nigh impossible to police, I imagine.

We could never quite convince Lily that her financial affairs had all been satisfactorily sorted out but she fretted constantly about whether she owed money to anyone when she didn’t.

At the end, my brother and I were with Lily when she (as she herself believed) reached the gates of heaven. It was what she had been praying for for a very long time and I was happy that those prayers had finally been answered.

As a footnote to this, I should add that there was one thing that took me by surprise regarding mum’s and Lily’s individual responses to being moved into a care home. Mum was always the more flexible and amenable of the two sisters, but it was she who found it much more difficult to accept her situation, while Lily, (who could sometimes be rather stubborn and blinkered in her general attitudes about the world), accepted her lot without a single word of protest.

Transcript of Lily’s hand-written article for the family archives

‘I remember, I remember the house where I was born’ on the 25th November 1919. It was and still is, a little cottage, then with a thatched roof, now slated, in the townland of Lisnabane in east Fermanagh. There was a garden in front, with a little path leading to the public road. The border along the path was tended to by my Mother and I especially recall a magnificent peony rose blooming there. Very little has changed, except fields have been made larger and the apple tree in the haggard (hay-yard) has disappeared. The Haggard was where the winter fodder for the animals was stacked – in those days, small farms did not have many sheds. The spring-water for drinking and cooking came from a well in the meadow across the road from the house, rain water from the roofs was collected in barrels for washing etc.

My elder brother Sam and I played about in the fields. My younger sister Maude, was too small to join in our exploits. We were not allowed to go into the ‘back fields’ near the ‘big river’ as it was dark and deep with whirlpools and had already claimed a life or two. Sam nearly managed to drown himself in the ‘small river’ but Father was at hand and rescued him in time.

Looking back, I can only recall the sunny days with the horse chestnuts in bloom along the lane – I am sure there were many cold, wintry days; days of hard work for my parents, keeping us and the animals well and healthy during the winter.

Coolrakelly School. Lily is the second left on the second row from front.

On the whole, we were a healthy family. Sam had to have his tonsils removed –this was done at home. I vaguely remember two DR’s arriving – I don’t think the operation took very long and Sam lived and enjoyed good health.

Various aunts, uncles, cousins and neighbours visited us. We went to school along with the other children in the district to Coolrakelly P.E. School – a twoteacher school. It has now been replaced by a modern bungalow.

On Sundays we went to Sunday School and then church in the afternoon to Tattykeeran Church of Ireland. Sadie or Essie Fleming played the organ and Father sang in the choir. There were a lot of rhododendron bushes around the church. We were usually there early and could play in the shrubbery until Andy Fleming called us to Sunday School. Clothes often suffered in our play and we got into trouble, for clothing was hard to come by in those days. Fortunately, my Mother was skilful with her sewing machine and knitting needles, so we were turned out fairly well on Sundays.

There were few motorcars on our roads in the early 1920s. Horse trap, cart or bicycle were the main means of transport. I can remember running along the road at Lisnabane to meet my Mother returning from shopping in Fivemiletown with her bicycle laden. She had a little brown velvet coat for me made by a dressmaking aunt of my Father’s. That must be at least 65 years ago and I still have the brown button from that coat.

The farm at Lisnabane was small, not much outlet for grazing cattle, so we moved in January 1929 to Drumacken – a different type of landscape, near hills and heather. All our ‘flitting’ had to be transported by horse and cart. Kind neighbours from our old home helped with the removal.

We soon settled into our new home, welcomed by the near neighbours. I think they were glad to have a family living on the farm which had been vacant for some time.

As well as moving our household and yard belongings, the cattle had to be driven some ten miles but that was not unusual, for drovers and cattle walked long distances to ‘fair’, as there were few cattle lorries.

My brother Billy was born on February 1st of that year. Three of us started school at Emaroo P.E.S. in January 1929. Billy joined us later when he was old enough. We had kind teachers who did their best to give us an education. Some of us enjoyed school, while others were just waiting until they could leave at fourteen. I always liked reading, especially travel books and history – at home we had many books which my Mother had inherited. Our teacher, Mrs Carrothers, encouraged us to read, and arranged with the county library for books for borrowing to be supplied to the school. Most of my education has come from reading.

We had a happy childhood. We had little of this world’s goods. We did not have bicycles until we earned the price of them. Any treat that came our way was appreciated. When we were old enough, we cycled to Clogher to visit our cousins and they, in turn, came to see us.

There was not much time to get into mischief as we were kept very busy after school hours and on Saturday. In the spring, potatoes, turnips, carrots etc had to be planted, also oats and wheat. Potatoes were dug with a spade, spread, clamped and then drawn home.

If it was a wet season we were often fearful that we would not have a fire in the winter. But God was always good to us, and along with the hay crop, we always managed to survive, although there was much hardship and hard work. Then came the cutting of the corn and the digging of the potatoes, and if the potatoes had been planted in the ‘big field’ the drills seemed long and endless. Gathering potatoes was a task that we children did not like as they had to be graded as we gathered, large for the table and for seed, small to be boiled for the pigs and fowl. If we had a good crop, we were able to sell some. Morton had a name for good potatoes. We always hoped to have these chores done before Hallow-eve. Nuts, apples etc and Mother made apple dumpling. Friends often joined us.

Our yard and barn were supposed to be haunted – an early occupier had died there, though this never worried us. The only occurrence I can recall was when a fox got in and the hens made a fearful noise but when investigated, the fox had gone.

Drumacken was a lovely part of the country, especially when the whin was in bloom. It was very hilly – two steep hills led up to the house passing our neighbour, Cashel, on the way. They were lovely to ride down but hard to push up.

After church on Sundays, we were free to enjoy ourselves. We walked the local field tracks and through meadows, climbed Killycullagh and Brougher mountains. On top of Brougher now, stands TV masts. In those days we had never heard of TV. We did not have a radio. When we visited our Clougher cousins, we had a chance to climb up Knockmany Hill. The local Fermanagh paper, ‘The Impartial Reporter’ gave us our weekly news. If one of us had been in Tempo village, we brought home a Daily Paper. The outside news did not bother us very much but I did listen to the older folk talking and knew that there was much depression in the country. I remember hearing of the ‘Wall Street’ crash in America.

Money was very scarce. The creameries paid very little for milk – about two and a half old pence for a gallon. You had to pay for having milk collected. I did hear of one poor man who had so little milk in his churn each day, that at the end of the month he owed the creamery more for collecting than he got for his milk.

We were brought up to be useful. Apart from the work around the home, my sister and I learned from our Mother how to make our clothes etc while my brothers learned farm husbandry. My sister, Maude, brother Billy, and myself, left home after leaving school to earn our own living. Sam stayed on the farm. He ploughed, sowed, reaped and mowed for some years. He was always handy with his hands and was a very good farrier. Wet days were always busy days at the forge when the farmers brought their horses and donkeys to be shod. It was a great place for gossip – lies and truth. The forge was beside the river which suited Sam well, as from a small boy he was mad about fishing. He gave us many anxious moments when he did not return when expected and we feared that he was in the river.

As a family, we have all happy memories of our childhood at Drumacken. Of course, there were disappointments and sorrows. One good thing was that we had very helpful friends and neighbours who rallied round in our times of need.

I was very happy to go back with my nephew, George Acheson and his little son Graeme, some years ago to visit Lisnabane and Drumacken. It was high summer. Both places were looking as lovely and as peaceful as ever. The little river by the forge was clear and unpolluted. Long may it remain that way.

L. Brown Feb.1991

Lily’s ‘Memory Book’

created to jog her memory

This is a memory book compiled for me by my niece, Lynda, in July 2011. At the time, I am ninety-one years of age and am living in a Care Home in Lisburn.

My aunt reads her ‘Memory Book’ and although she seems not to remember the names of the people in the photographs, she is able to refer to the inserts which jog her memory, if only for a few seconds.

Mother and Great Grandmother

Lily says, “Mother was always a housewife, looking after the children, baking, cleaning and farmwork with the animals. She was quite strict but very kindly. She enjoyed crochet and knitting, and fine lace work.

We ate potatoes boiled in their jackets with bacon and chicken. Semolina or farola for afters. Mother passed on her craft skills to Maude and me. Mother had lovely brown, curly hair and hazel eyes. If she was alive today, she would look like Lynda.”

Maude and Lily in happier times

Maude and Lily in happier times

The well-used notebooks that recorded Lily’s stay in the care home.

Various diary entries taken from Lily’s visitor notebooks from 29th February 2012 – 22nd January 2015. Although Lily was visited by a family member almost every day, only selected diary notes have been mentioned here.

2012

29/2/2012: No false teeth today but had a good chat with Lily. She’s looking well.

28/3/2012: Lynda called in during the morning. Lily very, very tired and wishing to be in heaven with uncle George. Lovely day outside – a pity I can’t take her out, but she’s too tired.

13/4/2012: Lynda called and had a ‘conversation’ in the office regarding the ‘Tena’ pants. Lynda is frustrated☹about this and hopes it’s put right soon.��

3/5/2012: Lily somewhat ‘chesty’ today – keep an eye on this, although Lily still seems to be in good enough spirts. She was hungry, so I gave her one of Jean’s shortbread biscuits and a glass of milk. Spoke to nurse S who hears a little crackle in Lily’s lung and will phone the doctor now to get antibiotic.��

5/5/2012: Lynda called after playing squash. Lily very weary today – maybe the antibiotic is having that effect but she shows no interest in anything. I noticed that part of her front tooth is missing (the reason why she’s lisping?) but will talk to George about it. As long as Lily is in no pain it’s perhaps better that there’s no dental intervention.

6/5/2012: Barbara and George called in the afternoon. Lily in good form. Yes, Lily has lost a tooth. We spoke to her about this and it is causing her no pain, so she doesn’t want anything done to it. She has promised me that if it starts to hurt, she will let us know. I spoke with L – she feels that we should leave Lily’s tooth as it is, unless Lily complains.

17/5/2012: Lynda called after a full day at school. A terrible miserable day outside but Lily is in good enough form. She’s been looking through her old photograph album. Gave her a biscuit and some milk. Lily told me today, ‘memories live longer than dreams.’

28/6/2012: I went into the loo to get water for the plants - * I need to talk to you about this, George. I spoke with S and B – B cleared things up and was going to give Lily a shower after I left – she’s really good. Lily was very cross with me for saying that she needed a shower!!

23/6/2012: There is still no mat in Lily’s room. I reported it again (3rd time!) and now I’m told that nothing can be done until Monday when maintenance is back.☹

25/6/2012: Still no mat in Lily’s room – I will ask again (4th time) and also there’s been no feedback about incident last Monday. Things slipping?

26/6/2012: Jean here. Lily is looking well today in her purple outfit. At least it’s not raining at the moment and the sun even came out for about a minute! Lily also likes the M&S chocolates that I brought along – I think they will disappear soon.

Lynda here – Lily got a mat – yippee! (The persistence paid off.)

9/7/2012: I had a great conversation with Lily this morning about the photos in her scrapbook. She was able to tell me the names of a few people and I think her memory is slightly better these days. Certainly, she seems to be in good form, although the days must seem very long.

11/7/2012: Lynda in to do a bit of singing in the dining room for the residents but Lily didn’t want to come and I won’t force her. Mummy was always the one who liked my singing.��

What We Waste

In wheel-chaired anticipation they gather and I will sing Carrickfergus for them –this posse of souls, eyes eternity-filled already, but no matter. It does not matter.

I find a note, difficult with the range of the song, and start to sing, transported to a time of used to be, when music rinsed my childhood with begrudging sweetness.

Afterwards somebody shouts, ‘Will you not sing Carrickfergus for us?’ as though the song had been already chewed up, regurgitated and made ready for repeat.

So I start again, not minding, at peace with an audience who cannot criticise or hold the notes in place for longer than a blink.

And in a room not far away my mother and sister with the open door of my throat swallowing their silence with song, and my mother’s whisper, like filigree, ‘That’s her. She used to have such a beautiful voice.’

13/7/2012: I’m going off on holiday for a couple of weeks George, so you’re in control now! PS Remember to give Lily some cold milk (also biscuits in the drawer need to be broken up to save Lily’s teeth, and water her plants). I trust you!

George called in – Lily in good form. I will try to remember all your instructions, Lynda.

3/8/2012: When I was sitting with Lily, L (the entertainment coordinator) arrived with a little RED HEN! And some chicks and a DUCK! So super for Lily to see that and be able to touch them. Thank you L. x

4/8/2012: George and Barbara called. We’ve left some money in the office for hair and feet ‘do’s’. Lily has run out of tights and a few other items of clothing – replacements coming soon. Together we completed the crossword in the Belfast Telegraph.

6/8/2012: Alice telling us that we’ll have a visit form a DONKEY later on. Eeeeh Yaaah!

28/8/2012: Barbara and George called in. Lily had just finished eating her dinner - everything eaten up. Lily now has 4 jumpers and she thinks it’s her birthday!

1/9/2012: Have put Lily’s name down for a trim, as she’s a bit shaggy at the moment!

3/9/2012: I asked for Lily to have her hair trimmed which was fortuitous as the hairdresser was in the building. She was quite happy to do as she was told (Lynda in teacher-mode today!)

10/9/2012: Lily had her glasses on and was sitting reading a book when I came in. She told me that Maude has gone abroad but I told her honestly that mummy had died. Sad.

13/9/2012: Lynda called in after a pretty tiring day at school with lots going on. I brought Lily a black cardi that belonged to mum and put Lily’s label on it.

3/10/2012: Thanks to both L and M for calling in to chat with Lily. We, the family, all appreciate this very much. I brought in Lily’s new memory box with a few new things to talk about. Lily very appreciative.

20/10/2012: Lynda called in after squash this morning. Lily looking good. A rather nice, mild day today. I read Lily’s bible to her and she liked that – Psalm 121 and 1 Corinthians 13.

8/11/2012: Lily looking weary again today. I can see a change in her lately. I’m here after a long day at school and feeling a bit like Lily! J has just come in and told me that Lily has a urinary tract infection which explains a lot about Lily’s lethargy. It’s the time of year for these things, I guess.

9/11/2012: Lily taken to hospital today – bloods low and she’s dehydrated. Not impressed with the nursing care she had on arrival and had to say something (although did not write a formal complaint). Lily in hospital for one week.

16/10/2012: Lily had not been left off by the ambulance yet when I arrived. It will be good to have her back in the home here again, where things are more familiar. George and Barbara to call later. The staff here are looking forward to having Lily back.��

17/10/2012: Had a chat with the ‘girls’ who have ‘coiffured’ and pampered Lily well.

25/10/2012: Lily’s birthday! Lynda and Farah visited and read Lily her cards. There is a cake waiting for later on, so maybe George and Barbara will be able to share some – yum yum!

9/12/21012: Lily says she’s ‘Waiting to say goodbye to everyone’.

18/12/2012: – 28/12/2012 (over Christmas) Tavakolis and Achesons all sick (norovirus) and had to stay away from the home.

2013

7/1/2013: Lynda called in after her first day back at school after the holidays. Lily very lop-sided on the bed but I fixed her up. Quite a mild day outside but it’s set to get colder, I expect. Lily very, very weary today and could hardly keep her eyes open – she is just simply tired of life at the moment and tells me that regularly.

Is this what I do?

On a corridor of fresh-painted magnolia sunbeams stroke from Velux windows onto freckled carpets, while a television talks too loudly to itself in someone’s room.

I find you sleeping, head sagged as on a mis-hung coat hanger, hair, just brushed, still full of war-time curls, a legacy that did not pass itself to me.

I say your name, see the reluctant wakening of your eyes, the disappointment you had not slept your way to heaven. You have told me this before.

Today we talk of blue dresses and funerals and how you love my coat, and how you love my coat, the colour redolent of something already scudding out of view.

You ask me now if this is what you do, just sit and wait, and wait and sit, the resignation in your voice the hardest thing for me to bear.

For in this room, that thief of time has measured out its false remembrance in the ticking of a clock, as the past becomes the present and the present loiters somewhere in the past.

10/1/2013: I’ve had a fairly ‘challenging’ day at school, shall we say. Lily’s leg is ‘progressing’, as she puts it. And also, her arm, so that’s good. As long as we’re all ‘progressing’!

5/3/2013: Yesterday I asked K to wash Lily’s hands, which she did, - plus tidied her nails. It isn’t anyone’s fault as Lily gets up to go to the loo herself but a very close eye needs to be shown towards the hygiene of her hands. Lily looks smart in her blue cardigan.

10/3/2013: George called in on his way back from The Mournes – very cold on the tops. I see Lily has a very colourful shawl. Brought her some flowers.

12/3/2013: Big turnaround with Lily today. She has succumbed to the sickness virus and is not well at all. I haven’t seen her looking so poorly since we took her to the hospital last year. Will phone you, George. Waiting for the GP to come now.

13/3/2013: Lily in hospital – she has a mixture of norovirus and a urinary tract infection (UTI).

28/3/2013: Called at lunchtime but not happy as Lily’s dinner was there and she was quite prone on the bed (dangerous for choking). Also, if I hadn’t given Lily her savoury food (she ate it all) she would only have taken dessert herself. I spoke to the nurse about it.

17/5/2013: E was very good about helping me this morning to change Lily but I had to speak to S about (a) Lily never being propped up straight when she’s given food, (b) A heavy jumper being put on Lily on a roasting hot day, (c) A dirty old apron being left on Lily’s bed, etc. Not good enough really, but E and S were helpful.

21/5/2013: When I called, Lily was trying to eat her lunch by herself – I’m not happy about this.

22/5/2013: Farah was here. Had a nice wee glass of milk and afternoon conversation about Royal babies!

23/5/2013: Farah again. Lily in good form. Told her we had a new prince!

12/8/2013: It’s nice and bright outside. Lily was in her nightie but I left a nice blue dress out for her to wear later, if she feels like it. The girls have put a special mat beside Lily’s bed that sets off some sort of warning sound when she gets out of bed.

20/8/2013: Lily has found out how to dodge the mat (she’s pretty smart at it) and wishing the Lord would take her home.

26/8/2013: Surprisingly, Lily said to me today, ‘I’ll make up my mind to be happy here’ – what a great philosophy for life.

5/9/2013: Lily a bit confused today and still in her night clothes. I put some body lotion on her arms as they were very dry – but her skin is like parchment.

28/9/2013: Lily had a fitful night and didn’t want to change out of her nightie. However, as it was noon and a lovely day, I thought she might have visitors, so I persuaded her to change into a dress. She was upset today about generally being still alive, so we talked about that. I am very honest with Lily when I talk about these things. When I left, she was more settled and probably hadn’t remembered anything I’d said.

23/10/2013: Lily unusually tired today. *George, I’ve come back in to write this as I only found it out on my way out. I’d noticed an oxygen cannister by Lily’s door, so asked one of the girls if she’d needed it. Then they told me that Lily had had a fall last night and the doctor was called out. Lily has a UTI which maybe explains her lethargy, but I’d like to have been informed – maybe they phoned you?

25/10/2013: George called - good to see Lily feeling a bit better. I spoke with the nurse in charge and asked that the home contact me if there was ever a concern. I also asked them to ensure that Lily was helped and encouraged at mealtimes but was assured that this was already the case.

Lily likes this little prayer written by an Alzheimer’s patient. It seems to bring her comfort, even though it is admitting her own confusion.

Dear Lord Jesus,

I don’t know who I am, I don’t know what I am I don’t know where I am, But please love me.

Taken from ‘Prayers from the Edge’ by Catherine Von Ruhland

27/10/2013: Lynda found Lily with a cold dinner in front of her. There was a chair pulled up beside the bed so perhaps someone had sat and tried to help her for a very short time but in the end, I gave her her pudding. However, she wouldn’t have had anything if I hadn’t come in. I’ll search for someone on my way out to have another word and try to arrange a meeting.

2/11/2013: Pretty chilly today and the roads were terrible this morning, too. Lily said to me today, ‘I’ve just got that feeling that I won’t be here for too much longer, and I’m ready to go now’.

10/11/2013: Remembrance Sunday. Siamak and Lynda called in. Lily was so pleased to see Siamak and lit up when he came in. Lily was in super form today and the best I’ve seen her for a while. ��

12/11/2013: Again, Lily told me that she’d be glad to be home, meaning her heavenly home (I assume). She’s looking forward to being there. We were going over old photographs and when I asked her who the woman was in one of the black and white ones, she remembered Daisy dog (but not me and Jean!) She keeps telling me she wants to die. Time must seem very long for her now, I suppose.

25/11/2013: LILY’S BIRTHDAY Lily got some nice cards and I bought her an orchid that she can look at every day. The colour of it is beautiful. I opened all of her cards for her but she wasn’t in a chatty mood at all. Nice, though, that people have kept in touch with the birthday greetings.

3/12/2013: Lily really doesn’t look well today and told me that she might die tonight. I asked the nurse to check her urine for a UTI to see if that was the problem. To be honest, Lily has just had enough of living and looks forward to going to heaven now. The girls changed her quilt to a nice fresh one for me.

Photo credit: Lynda Tavakoli

2014

15/1/2014: Lynda called in after school and spoke to a nurse today who said I should have been told about a fall Lily had on Monday night. I’m annoyed about it because I specifically waited to see the nurse yesterday and she didn’t mention it at all. Anyway, today’s nurse is monitoring Lily’s BP etc and will phone the GP if necessary.

18/1/2014: Auxiliaries helped me lift Lily up a bit and to change her pants. I have a feeling that I’m being a pain to some people around here. I asked Lily to try and not get out of bed as she’ll fall, but the staff need to be vigilant, too. 1/2/2014: Lily says she’s ready for heaven.

5/2/2014: Lily’s under sheet not changed from yesterday, after I had asked. I realise that Lily puts up a fight about these things but it’s a question of hygiene. George - if you’re in today, I won’t be able to call until Saturday now, as my car is in the garage. Lily ate hardly any dinner and was unsupervised when I arrived – I was afraid for her with the fish bones. Sorry to be such a moan but these things are important.

8/2/2014: Envelope in the drawer for you, George, re Lily’s account. I think it needs to be topped up.

24/2/2014: Lily just tired of this ‘wearisome’ life but has to go with it, I guess. She looks forward to going to heaven which she hopes will be perfect, but that none of us know.

27/3/2014: Lily was asking me if she’d ever get home but we had a chat about how impossible that would be now. She accepts this.

20//5/2014: A very damp day outside – miserable and not that warm. I arrived when Lily was having her lunch but no one was with her and of course she wasn’t eating much. I don’t know – you mention these things so many times! Much of the time Lily’s food is in front of her, stone cold and I’m increasingly annoyed about it. What if she didn’t have us to be her voice?

29/5/2014: Dropped in after school. Lily was in the loo with the nurse there, waiting. The nurse was on her own taking Lily back to bed but really, I said, there should be 2 people doing this every time. I know it’s hard for them but I just detect a wee bit of an attitude when I say something these days (even if I try to do it diplomatically). Lily slept for most of the time and when she woke up she asked me, ’Do you know how long it will be until the Lord takes me?’

17/6/2014: I’m feeling sad today as it’s the anniversary of mummy’s death.

28/8/2014: *George, I’m very cross. I came in at 2.20 from school and Lily’s pudding was on the chest of drawers. I made my feelings known, but will talk to S on the way out. I couldn’t even find a spoon to feed Lily. This should never happen considering the discussions we had with the home last week. I’ve just spoken to L who is a really nice girl and says they are more or less struggling to cope with the demand at the moment. I totally sympathise, but we are Lily’s relatives and have a duty to see that she has the best of care. The wee auxiliary helpers are lovely as are most of the staff and they are all under such pressure.

8/9/2014: Hi George – I’m cross again (although I don’t want to be!) I’ll speak to you later.

Hi Lynda – the doctor called re Lily’s swollen ankle and he is arranging for her to go to hospital. We went over and took her to A&E and she has a broken bone in her foot.

11//9/2014: George and Barbara called in about 4.45 - a dirty kidney dish from Monday night was still on Lily’s bedside table – I removed.

12/9/2014: 4pm. Meeting took place with management – all points mentioned and acknowledged. We will write officially to the company who run the home and to the Health Trust.

13/9/2014: Siamak and Lynda called. Lily knew both our names and said them clearly when we came in (she’s always delighted to see Siamak!)

16/9/2014: Lily told me she’d ‘had it’.

19/9/2014: Lily asked me not to go away today. Huge effort for her to talk today.

20/9/2014: Lily becoming increasingly weaker and can’t really talk. Things not good next door either with David in mummy’s old room. David died at 3.30. Sad times.

4/10/2014: I attended David’s funeral which is how you’d like a funeral to be – not much religion and a lot about a life. The family are lovely and Derriaghy church is beautiful.

21/10/2014: George and Barbara took Lily to the Lagan Valley Hospital to get her cast removed. The physio worked with her for a while and he will get in touch with the home soon. Lily will need the support of 2 people with walking and moving. Lynda called in a bit later and Lily was resting but she couldn’t remember being at the hospital. She said that she was very cold in bed last night so I’ll mention it to the girls when I leave.

8/11/2014: The first thing Lily said to me today was, ‘I wish I could die and get away’. We had a bit of a discussion about it being out of her (or anyone’s) hands. Horrible day outside.

10/11/2014: Hi George - I read the letter from the home that you left regarding Lily’s fall and think that the response was fair enough. It’s rare that you get people to ‘put their hands up’ when they’re in the wrong. Refreshing.

15/11/2014: Lynda called in. Lily was looking (and feeling) very tired today. She was sitting very awkwardly with 2 pillows behind her head but bent forward. When she spoke to me, I had a feeling that she may have had a TIA (transient ischemic attack) as her speech was a bit slow. I called P in and they are going to keep an eye on this. It may have been the position of Lily’s neck … however, she seems very tired today and very different from 2 days ago. Funny, she asked me to put on her blue dress and she talked about her mother, father and mummy, and said she was ready to go. ‘I wish I could sleep out this life’ she said, ‘but don’t have any funeral for me’ – so we talked about that before I left. I’m finding it difficult.

16/12/2014: Lily had visitors from Fivemiletown today and she was able to recognise her old doctor apparently. It’s lovely that she still gets visitors from the past. I gave her her lunch – very little – only 2 scoops of ice-cream.

31/12/2014: Last day of the year and Lily is looking well, I’m pleased to say. She had had her hair done nicely and was happy to see me. I must see about providing a new diary now. Happy new year, one and all.

2015

1/1/2015: The first day of another year. 2015 and Lily can hardly believe it (and neither can I). Also, Siamak’s birthday. The roads are nearly empty this morning. Lily looking okay but sleepy.

13/1/2015: Where do all the pens go? I brought half a dozen before Christmas. Maybe Lily eats them!

16/1/2015: The doctor was here when I arrived at 1.30. Lily had a lot of blood in her urine. The doctor was very nice and the home staff are following instructions to try and keep Lily out of hospital, if possible. I’ll try to phone you later, George.

George and Barbara called at 4.30. It’s important that Lily drinks fluid. She was not assisted when trying to eat her tea and we drew this to the nurse’s attention.

19/1/2015: Still some blood in Lily’s urine and the doctor will be called tomorrow (Monday).

21/1/2015: George called in at 2.15. Lily had just been sick and doesn’t look too well and has a temperature.

22/1/2015: Lily died today. I hope we did our best. Sad.

after the funeral an atlas on the table open at Africa you were always hoping to see other worlds

Jean James

Lily’s Place

Its two-up, two-down walls have hunched their mortared backs, a poach of creepers too long now in the making for any redemption. Outside, a fence she painted green, always forest one year fern the next, leans a last resistance to neglect it did not ask for, nor expect. And here is me, standing at her closed front door, remembering.

A Rayburn stove, born the same year as me, I was always told, will still stand sentry in the parlour, a freckling of black spit on the carpet, reminders of its choked-out innards and too many overlooked close-calls. But there will be a bible there to save her, and the tracts, and church envelopes, and the charity appeals that kept on coming every time she sent them more.

There’s the cuckoo clock above the chair she sat in, its voice lost to overuse sometime in 1966, its game little body continuing to poke a presence for years afterwards. There will be that oldie smell that sucked into my child’s bones and made a home there even when I left. And there will be the scullery of coldness and oldness and nothing much besides.

If I take the stairs my feet might pause upon the second tread, a thinning carpet, bulging banknotes (for emergencies or birthdays), and any self-respecting burglar’s dream. Follow, then, the spoor of daisied paper weeping from the walls and find her tiny bedroom, long ago resigned to her frugality – a bed, a chest of drawers, a quiet harbour for the soul.

And here is me, standing at her closed front door, remembering the moment when she asked me where she was and who was I. Remembering the day I closed this old front door and turned the lock. But most of all remembering, in that other place, the time I asked her what she thought about and she said, home.

ASCENSION

January, on the day of my aunt’s funeral in the little church at Cavanaleck we watched a butterfly, a red admiral, woken by Sunday heat, rising up from the shining pew –

hallelujah with wings.

Raring to go it was, just a little like her, sitting up in bed in that best blue dress ready to be taken.

There, in her memory book, warmth seeps from the past, a family at the hearth, mother, sister, father, brothers and that bright white light of burning pine –and everything ascending.

Jean James

Conclusion

Like much in life, we often do not fully understand the effect of pivotal events until we experience them personally. Certainly, we can empathise with our fellow human beings in times of emotional and physical distress, but to really appreciate what others go through in challenging times, it is perhaps necessary to have travelled that particular road for ourselves. Which is why it is so important to talk openly about uncomfortable subjects like dementia because it might, in some part at least, help others to acknowledge and cope with a dilemma that could possibly lie ahead of them.

I have learned much about myself in the writing of this book, including those things I thought I had a handle on at the time but probably did not; things that I had forgotten about but that made me laugh or smile in the remembering of them; things that reminded me of how it is not always possible to get everything right. Most of all though, I hope I have learned to value more the relationships I have had with those whom I love and trust.

No life is without its trials and if we are fortunate, they can be limited. How we deal with them though, depends upon a wide range of variants that is impossible to list here, but I believe that by sharing experiences we can ease the burden of others, albeit in some small way. If nothing else, discovering that another human being has been through similar difficulties, can make the world seem a little less lonely; and dementia can be a very lonely place at times, for all of those involved.

Not everyone will be affected by dementia, of course, but 1 in 14 people aged over 65 in the UK will encounter the disease. This rises to 1 in 6 for people over 80. In this book I have tried to offer an overarching view of how dementia influences the dynamics of just one family – mine. Others will undoubtedly have different experiences and challenges, but regardless of age, class, culture, race, gender etc, we all have things that connect us.

As was alluded to earlier, I was not a conscientious pupil during my school days, only passing my A level English Literature exam by the skin of my teeth. Yet during the putting together of this book, I was reminded of E.M. Forster’s novel ‘Howard’s End’ that was included in the curriculum at the time. I had inadvertently consigned to memory a quote that has somehow proved of much more relevance to me now than it ever did when I was 17 years old.

There have been many unsung heroes laced within the lines of this book. Folk, whose names have been omitted because of confidentiality reasons but who are no less valued than anyone else. Carers, who offered unconditional kindness and commitment, often with little monetary reward - our world would surely be a much poorer place without them. This book would never have seen the light of day without the support of my siblings, George and Jean, and my long-suffering husband whose encouragement steadied me in times of real doubt. And finally, to Mark Ulyseas, my editor, whose care, dedication and attention to detail saw this labour of love finally come to fruition - I offer you my sincere and heartfelt thanks.

‘Only connect the prose and the passion, and both will be exalted, and human love will be seen at its height’.

To be valued, cared for, needed and loved. Surely, it is what connects us all.

Lynda Tavakoli

Ireland May 2024

Useful links: https://www.alzheimers.org.uk/ https://alzheimer.ie

https://www.dementiauk.org/?gclid=CjwKCAjwrpOiBhBVEiwA_473dOZITn _6NibCauvTG8KCqkaj44q7s0znrPNPtO8vUTPKvWfSl8HicRoCqC8QAvD_BwE https://www.dementiani.org/ https://www.penguin.co.uk/books/305697/what-dementia-teaches-usabout-love-by-nicci-gerrard/9780141986432

Lynda Tavakoli lives in County Down, Northern Ireland, where she facilitates creative writing classes and has worked as a tutor for the Seamus Heaney Award for schools. She is a professional member of The Irish Writers Centre and was nominated for ‘Best of the Net’ in 2022 by Lothlorien Poetry Journal and The Pushcart Prize 2024.

A poet, novelist and freelance journalist, Lynda’s work has been published in the UK, Ireland, the US and the Middle East. Lynda has been winner of poetry and short story prizes in Listowel, The Westival International Poetry Prize and runnerup in The Blackwater International Poetry Competition and Roscommon Poetry Competition.

Her poems have appeared in The Irish Times, New Irish Writing and been included in numerous journals and anthologies. Lynda was winner of the Mencap International Short Story Competition and short-listed for both the Yeovil Prize and the Well Festival of Literature prize.

She has written human interest articles for the World Cancer Research Fund, The Belfast Telegraph, Slugger O’Toole and most recently, Central Bylines.

The Boiling Point for Jam, Lynda’s debut poetry collection, is published by Arlen House and has received wide acclaim for its raw honesty and authenticity.