Week Two

Mammy was a great help this morning. She remembered the clothes business and was already dressed and downstairs when I trundled down.

‘Tree’ was there, grunting his way through his second bucket of cereal.  Then Conor came down dressed, washed and brushed too. What a morning. And it wasn’t even 8am.

Mammy was smiling when I greeted her. She knew she’d done well. I told her so.

Conor is being very good about me not doing all the school runs this week. Soon he’ll be like his brother and find it ‘highly embarrassing’ to have me anywhere near the school.

But at the moment he enjoys the Nottingham novelty of me being a Mum in the playground to walk him home. But it is ‘The Broad Glade Day Centre’ again today and they don’t come until after 9am on a Friday. They have to vary the rounds and give everyone earlier and later shifts – to be fair to all.

Time to ourselves, mother and daughter, and I have a delicate announcement to make. Shocking really, but because I dread the response and disappointment from Mum, I have also neglected to prepare myself for the weekend ahead.

(Extricate those guilty feelings, Dawn, and do what you have to do.)

“I have to get things ready for a wedding this weekend, Mammy.” Pause to watch the response, but clear.

“It’s somewhere up… Yorkshire way, I think. It’s in a house called ‘Sledmere’.

I showed Mammy the painting in the sitting room of a former ‘Sir Richard’ posing arrogantly in his hunting gear in one of the rooms at ‘Sledmere’; at ‘the Big House’. I’ve never been there.

“Will there be someone here then?” she managed.

“No, I couldn’t get anyone to come here this time, but you will be able to stay for the night at ‘The Broad Glade Day Centre’ – like you did at Easter. You will be well looked after again. Is that OK?”

What can she say?

I was dreading telling her.

“But that’s not until tomorrow and I have to sort out what I’m going to wear for such a grand occasion. I need your help. Would you mind coming to advise me?”

The power of words to build up or to tear down sometimes astounds me. And the way we use and abuse their magic astounds me still more. I got it right this time though and she was right up those stairs to give me her wisdom.

I got the go ahead for the outfit and we came outside to wait for the bus.

The rain has stopped and we survey the sagging garden. The smell of green is rich.

It’s already 10 O’clock. No, you don’t need anything else. You are not staying there tonight. I’ll see you at teatime, later, today. Have a lovely time. Ah, bless her. I’m so glad I’ve told her now.

As I wave, I soak in the smells. I love my garden. The vegetables are nearly flattened under the weight of rain.

I bought a beautiful ‘Calla lily’ yesterday with flowers of the deepest cherry purple and freckly leaves. It needs ‘partial shade’ and wants to be brought in for the winter (can’t blame it for that, can you?) otherwise I’d have put it in the front garden. It looks like a meadow out the front. I take so many photographs of the garden; I could probably show you some. But you couldn’t really see it, smell it and feel it, so…

When I’m gardening I am so very much me.

It’s been about 5 weeks since the front garden was shaved and weeded and it’s now the middle of June. I wanted to weed it and tame it a little, but I’m so pathetic, I don’t have the heart – I look at those little plants squeezing between the paving stones and think: “Ah, it’s worked so hard and it’ll probably have a little yellow flower on it.” So I clear away that which is obviously dead and wander around my mini-meadow, wishing I could see the overshadowed plants that were intended to be pride of place. Still, they’ll all have their glory.

The sky is brightening and a hazy sunshine promises another lick of warmth. The cobwebs are dazzling as they bounce with the weight of the raindrops. The buoyancy and strength of the webs are amazing, as they move to the rhythm of the ground, shaken by the trucks going along the main road.

But I’m sure my garden must reflect me, as does the house – always in a state of needing stuff doing; everything in it’s place, but I’m the only one that remembers where that place is.

‘Round-to-its’ – everyone needs them and in my house there’s always a shortage. Simon keeps threatening to get around to it, but they’re hard come by.

Isabelle, on the other hand, seems to have plenty of  ‘round-to-its’. She’s very ‘out with the old, in with the new’; ‘if it doesn’t fit, give it to someone it does’, sort of girl. She’s my best friend since we were 12.  She is straight talking, efficient, looks great, knows me and still loves me. .

We both seek integrity in ourselves and share Christian values, vision and purpose. And I love her.

She is the sister I chose. When I was disowned by my own family, Isabelle and her father (‘Pa’) they took me in, and their home became mine.

Isabelle is married to Brian and they have two children, Bruno, aged nine and Violet, aged seven.

Her garden is years more established and about 4 times bigger than mine is and it looks out across a magnificent vista for miles. She pulls the weeds out.

I must go and do something domestic. No one noticed I’d done the tiles. I don’t suppose anyone would notice if I didn’t vacuum the place for another week. Isabelle would.

If anyone asks, I can now justify my day. I cleaned upstairs – well, not quite all the way up to Josh’s room – and did some painting and some gardening.

The gardening? You can’t really quantify it, can you? Not without sounding really nerdy (and I might just verge on that). I decided the indoor plants looked in need of a breeze and a bit of a photosynthesis boost. I needed some myself and stripped to my vest, but I seem to have embarrassed the sun again and now the rain’s back – just in time for everyone’s homecoming.

***

I have been brought up to love gardening and exploring the world of nature, especially as we lived in a tiny caravan space for nearly four years.

Fire damage and bad memories were probably as much why we left Nana’s house as anything. But I guess we’ll never really know now. Denial then and dementia now. It was a strange life at the caravan. The only time we were allowed to spend indoors was meals and bedtime. The caravan really was tiny. I’d say it was 12 foot by 5 foot, at the outside. My parents’ bed folded away into the wall and Debbie and I slept, head to toe, on a settee thing that ran the width of the back of the caravan. Debbie was sleeping with her knees bent long before we left the caravan.

But we learned all about the great outdoors. We climbed trees and lived in them. We scratched buckets in the well for water. One summer, the water was so low that Mum had to dangle me by my feet and I had to scrape the water and frogs from the bottom of the well. We made fabulous dens in the underworld of stream-side hedgerows – weaving doors, mats and shelves out of long summer grass – and had ‘parties’ of baked scones when our friend from the club used to come and play. Sometimes we would spend so long up the trees, that we wouldn’t notice the cows returning to the field. Once we were chased home – down through the field and under the barbed wire – by some excited bulls, after us dreaming in the branches for too long.

Long childhood summer days when we explored as many possibilities as young girls would dare and certainly wouldn’t have admitted. Daddy had a pick-up truck, ‘Marigold’, with stenciled flowers sprayed on, real hippie style. Mum would walk her bicycle to the village with us in the morning cycle home afterwards, but some days Dad would come to the square at home time, to meet us too, and us kids would go in the back of the truck with the bike, whilst Mum rode in the front. We loved that.

I am grateful for those unusual experiences we enjoyed, living in the caravan, and how we learned to work with nature, improvise, reuse and recycle. Nothing was ever wasted. I did learn to appreciate the value of things.

I wanted to be in the circus. I practised balancing a broom on my finger for weeks. I was good at hula hooping too. We had a ‘lean-to’ at the side of the caravan where much of our stuff was stored and where we often took shelter when the evenings were inclement and dark. There always seemed to be a mysterious glow around the caravan at night, that gave those long evenings a scary, but magical quality. My stilts lived in the lean-to. They were great – at least twice my height. I had to climb onto the roof of the caravan to get onto them. I would then totter like a peacock all over the campsite, then gracefully use the sticks to propel myself forwards until I could jump down. Anyone who saw me thought it was amazing, which encouraged me greatly. I loved to be a tomboy and to do clever circus tricks, or anything that might impress my dad, but I ended up quite impressed myself, so that was all right.

One day my stilt expeditions came to an abrupt halt. I was daring to ‘stilt-walk’ over the table and chairs in the lean-to, but the stilts were not quite tall enough to go that wide and they slipped – leaving me impaled on the ‘spire’ on the back of a chair. I was never taken to the doctor and I suffered a lot of pain for about a year. I don’t know whether it was that experience, or the fact that we had to go about 100 yards to the toilet blocks to use the loo, but I spent most of my childhood with headaches, nosebleeds and constipation. I hated going alone to the smelly toilet blocks. I dreaded the daddy-long-legs that flopped all over you as you went through the door and I hated the pain when I tried to wee.

Not having a bathroom, at night we shared a bowl of warm water, taking turns to wash our ‘top half’, then to stand in the bowl and wash the ‘bottom half’. This was a habit we continued right until Debbie left home at 17 years of age, despite the fact that the house we then lived in had a perfectly good bathroom.

Another vivid memory of the caravan was of Debbie and I being woken one night by Mum screaming, “No, Malc, please!”  When we dared to peep around the curtain, Dad had the hunting rifle up, threatening to shoot Mum. Shortly afterwards he came through to us with an offering of pickled vegetables and told us we were having nightmares. We certainly were. He was drunk.

Daddy used to get drunk at the club in Calverton and would still drive the car, after 14 pints. Twice he overturned the car (avoiding a dog in the road) and landed in a ditch. He smoked in those days too. One Christmas Mum bought him a cigarette-rolling machine, but he gave up smoking a week later – his New Year’s resolution.

Dad also once ‘left’ my Mum, and left me with a rare and beautiful memory – of Mum taking each of us girls onto her knees, eating ginger-nut cookies, with Mum crying and saying that she loved us and was sorry for everything. I was not sorry for that moment, I thought the good life had finally begun.

But he came back very soon. Daddy was formidable. He could be fun, but it was all so unpredictable. Unpredictable and with the power to kill.

early days at the caravan

Week One

Part One

Day to day; coming to terms with Caring.

Chapter 1   June 2007

Yesterday Mum did so well with the new regime: the clothes were left out in the right order (as discussed with the Occupational Therapist) and down she came – all dressed and smiling. (She hadn’t managed to change the underwear, so we’ll have to address that some other way. Donning clean stuff before bed is unconventional to me, but should work well enough) I felt so pleased.  ‘Breakfast Mammy?’

In the evening we tried another of  the O.T.’s  suggestions: I gave her a long broom and asked her to sweep the kitchen. She seemed happy and, after I moved precariously balanced potential disasters, I left her to it, to do my exercises before Simon returned.

 Mammy had swept the floor and there was a satisfying pile of debris to show for it. Full of praise, I issued her with a dustpan and, with lots of direction, she managed to finish the job. Success number 2.

Then she forgets and moans, “Can I do anything?” (I wish she wouldn’t phrase it like that.) “I’m just hanging about again!”

 “Conor is watching TV; I suppose you could find the sitting room and join him.” I suggested.

She found him this time.

But this is a new day. A screen of long hair sways behind another screen of cereal boxes: the boy is shoveling his way through a bucket-full of breakfast. The boy is Josh, my oldest son. He is 12 years old and enormous. He doesn’t have the same people-skills as others, but he is talented, clever and lovely. He has Asperger’s’ Syndrome, but it’s not always obvious. They call him ‘The Tree’ at school. He’s a handsome, hairy, 5’ 10”, size 11 shoe, hormonal, a ‘GREB’, apparently.

Conor is stirring, but he’ll have to go to school alone today, now Simon is working out of the house. Conor is 10 years old and an entertaining charmer. Simon now has a job at the Science Park, just a stone’s throw from Gibbons Street, where the mechanics’ yard used to be that my Dad and Grandad owned.

On automatic pilot I open the dishwasher to begin the ritual of emptying and making the lunches. 

It’s ‘Broad Glade Day Centre’ today and they collect anytime between 8.30 and 9am. ‘The Broad Glade Day Centre’ is a recently built Residential Care home and Day Centre, just a twenty minute walk from our house. Mum is taken there by minibus on Thursdays and Fridays, but she doesn’t like to go. I cannot leave Mum in the house alone and I need a break from her sometimes.

I’d better see how she’s doing with the dressing today.

“There you are at last!” she sighs with that inimitable ‘hard-done-to’ tone. “I wondered where you were. It was a long night.”

“Mammy, why didn’t you get up and get dressed? We left all your clean clothes there for you to put on when you got up; – like you did yesterday. You did really well yesterday!”

“But you didn’t come. I was waiting for you. And nobody came. So I went back to bed.”

“Remember the Occupational Therapist? You want to be independent with getting yourself up and dressed in the morning, so you don’t have to wait for anyone. Yesterday you did it really well. Here are your clothes for today… I’m making sandwiches; you get these clothes on and come down for breakfast. OK?”

Grump. Sulk. She’s not happy. But I’m not going to let anyone get to me today.

Josh is late – why do children hate wearing waterproofs? I suppose Josh loves the rain and can’t see what’s wrong with wearing it all day. And Conor just likes to be stubborn and contrary.

Mum’s not down yet, so I’ll intervene.

Good, the nightie is off, but the top is inside out and she looks upset.

 “Shall I put that the right way round, Mammy? It’s a bit tricky like that!”  We’ll try teamwork today. I’ll leave her to don her slip-on shoes independently and I’ll put the landing light on.

“I’ll go and make your breakfast, Mammy. Come down when the shoes are on.”

Conor is very cuddly this morning; he’s been good and got dressed, shoes on and hair brushed.

“Conor, when Nana comes down, go and greet her, cos. she’s a bit grumpy this morning!”

“Morning Nana?” he beams, sidling up and giving her a warm hug.

Conor is so good with her. He’s a bit cheeky, but he gives her so much time – mutually beneficial of course, as he needs an audience and she needs entertaining.  It couldn’t have been better really.

***

I feel guilty.

Why? Not doing something for somebody else I suppose. The boys are at school, Mum is at the day-centre, Simon is at work and I am ‘free’. Cleaning the house, cooking or shopping – these are guilt-free, but reading a book, swimming, even making coffee just for me, seems – naughty? Self-indulgent? Selfish? And now I’m writing, just for me – a day of indulgences.

I want to justify myself. You see I did sort the washing and tidy the breakfast stuff. I also made up a black grout to replace some loose tiles and cleaned the hall. Is that enough?

‘Guilt’, but not a ‘guilty conscience’, not about these issues. I have done nothing wrong.

Conscience kicks in when my brain, heart and spirit know that I’ve done something not loving – which is more often than one would hope. But ‘guilt feelings’ seem almost masochistic – they are not helpful, as far as can see, so I should choose to ignore them, I think.

The really big, bad thoughts are about coping, or not, with Mammy.

I can’t fetch Conor from school today because Mum gets delivered home any time after 3pm on a Thursday and I have to be here. I can do the shopping locally when she’s back, as she’ll enjoy the activity and that gives me more peace now – it’s OK Dawn, go and make that coffee.

***

My husband Simon and I met on ‘the Internet’, on a ‘Christian Connections’ website. We both knew that we were looking for a serious, long-term partner and marriage. He is hoping for children. I am prepared to honour that, God willing. Simon is a gentleman with (undiagnosed) Asperger’s Syndrome, like Josh, which presents itself, when his guard is down, in a repertoire of peculiar physical habits and mannerisms. I can trust him, respect him and love him. At the time we met he mostly worked from home, writing computer software programmes for large scientific installations. He’s an ‘electrical engineer’. He had his own home and was clearly practical as well as a computer whiz. Josh didn’t want me to get married to anybody, but thought Simon was cool; Conor was looking forward to the whole thing – especially the outfits and the party.

I was living in Kilburn, London, but had been considering moving back to Nottingham, so during the wedding plans, we also searched out a property in Nottingham.

Mums are supposed to be at weddings – especially your own. She said she wanted to come, so we put lots of thought into it and she came, with an escort, to our wedding, staying with me in my little flat – along with uncle-tom-cobbly-and-all.

the mother of the bride

It was hard work and fun, with all the last minute vanities and butterflies.

If Mum was at a loss as to what to do, she’d be in the loo, and as we only had one loo…

It was a wonderful wedding  – everyone said so.

We moved into a house in Nottingham on August the 15th 2006. It is a lovely Victorian house with traditional features: high ceilings, cornices, fireplaces and little tiles. And here I am:-

Changed.

Married.

New schools, new home, new family member/structure/dynamics.

New role for me as a house wife and carer.

No income for me.

Challenges, losses, gains, freedoms, promises, hope…

“I know the plans I have for you. Plans to prosper you and give you a future.” (Jeremiah: 29. V.11)

I’m holding on to that.

Chapter 2

Mum was born in April 1946, Dad in December 1945 – both of them just after the war, but in the days of rationing and frugality. Mum grew up in the Meadows area of Nottingham and would have been eight years old when rationing came to an end. Both of Mum’s parents had been involved in the war effort – Nana was in the land army and Granddad was a panel beater for the air force.

Mum had a passion for music – loving the Rock n’ Roll – especially Elvis. Like many young people at that time, Mum bought as many of the latest records as she could afford. She had to sell her records a few years after she married as Dad did not share her passion for Elvis and, besides, they really needed the money. I think it nearly broke her heart.

At 16, Mum – Avril – was pregnant with Debbie. That was a terrible shock to her mum, who was known as ‘The Duchess’, because she was ‘a bit above the norm’ and wore fancy clothes. (Dad didn’t like her much and called her ‘fir coats and no knickers’.) Mum had been working for six months as a typing clerk in a small office at Raleigh Industries. Being pregnant and unmarried was still considered very ‘shameful’, although Nana herself had had Mum before she was married.  Anyway, Debbie was born in May 1963, just as Mum had turned 17. They got married that Summer – all three of them. Then they moved into Dad’s mum’s house and Monica (Dad’s big sister) moved out.

Less than 2 years later, after the birth and loss of Mum’s second baby, Avril, I was born.

Dad rarely worked and what he did earn he often drank in those days. Mum was busy with us and Dad was too proud to claim any benefits. It was not a healthy pride, it was a snobby, arrogant pride that he learned from his mother, who would rather make her daughter work two jobs than claim help for herself. I remember as a child being almost proud of the poverty that they had endured in their early marriage, and loved to hear of their diet of dried NHS milk (which presumably was for us babies) and the molasses, cod-liver oil, salad-cream and bread. Mum hated salad-cream.

I knew that there had been a fire. Mammy wore polo-necked jumpers for most of my childhood, due to the severe scarring all over her chest, neck and upper arms.

The story was that she had been painting a reclaimed dolls pram in front of the open fire and had knocked over the bottle of turpentine, which had brought the fire over to her and up she’d gone in flames. It was an horrendous story, but Daddy was the hero that heard her screams and came to the rescue. He threw her to the ground, wrapped her in a large rug and saved the day. Apparently his hands were terribly burned and wrapped in bandages too.

A couple of weeks ago, Conor said to me that “Granddad had burnt Nana.” Somewhat surprised, I told him the story that we all knew, of Granddad, the Hero. He insisted that Nana had told him, so I asked her how the fire had started. She must have forgotten the original story, because she became very sorrowful and told us how Daddy had deliberately set fire to her himself. (He must have soaked her in turpentine, for the story they later used to have been believed.)

She said that he had set her alight and stood to watch her burn.

How terrified must she have felt to have the man she adored, crazed in such an atrocious act, in front of her, whilst the heat of the flames were all around her?

Why she didn’t leave him then – for her own safety and that of her little children, who must have been upstairs sleeping – is part of who she is and her weakness (or strength?). She says that he was hurting more than she was and that he didn’t want to live. Somehow she doesn’t seem to have taken it as personally as one might expect. She stuck by his story and she stuck by him. But then, if he tried to kill her once, I guess he might do it again if she upset him or got him into trouble. So at everyone else’s expense, she protected him. Always.

***

“HELLOA!” someone calls.

Mum’s back and they need to speak to me. I’m on the receiving end of behaviour reports now.

“She was a bit out of sorts today. She was teary this morning. Thought you might know what it was about?”

“Not really, she had a bit of trouble getting ready this morning and got a bit upset…”

“And she seemed to have trouble with her lunch, co-ordinating everything…couldn’t pick the glass up properly?”

What do I say? Co-ordination is definitely a growing problem.

“Well… thank you very much!”

And I am very grateful for those precious few hours when there is just me and no one hovering behind me or waiting for me. I am so selfish.

She was back in time for us to go and meet Conor on his way home from school and get the bits-and-bobs from the ‘Coop’ as well. I did ask first and she said “No”, but I really should have insisted that she used the loo before we went out. It can be very distressing for us both when she suddenly needs the toilet in the middle of the street…

***

Lost Down Memory Lane: Early-Onset Alzheimer’s: A Carer’s personal story.

Lost Down Memory Lane: Early-Onset Alzheimer’s: A Carer’s personal story.

By Dawn Fanshawe

Contents

Acknowledgments

Introduction

Prologue  (pg 5-7)

Part 1 (pg 8 – 55) Day to day; coming to terms with Caring.

Chapters 1 – 10                       

Part 2 (pg 56 – 74) Making a decision – Mum in a ‘home’.

Chapters 11 – 13                              

Part 3 (pg 75 – 124) Sectioned! Hallucinations, drugs and laundry

Chapters 14 – 21                            

Part 4  (pg 125137) Sunny Meadows Nursing Home

Chapters 22 – 24                         

Epilogue  (pg 144 – 148)

Chapters 25 -26

Notes/Bibliography (pg 149)

Appendix 1:  (pg 150)

Early, middle and late stages of Alzheimer’s

More information about Dementia

Choosing a care-home

Appendix 2: Where to go to for help  (pg 154)

Things to find out about.

Useful websites

Helpful Organisations

Financial support/benefits

Lasting Power of Attorney

Appendix 3: Mum’s funeral tributes (pg 158)

Acknowledgements

Firstly I thank my mum and my dad, for giving me life.

I thank God for protecting me and giving me new life in Him.

I thank all my family and friends, whose love and encouragement have given my life joy and purpose – particularly Simon, Joshua, Conor, Monica, Debbie, Catherine and family and Julia. And I thank my Church family for their love, support and prayers.

I also acknowledge my gratitude to the NHS and Council Services (in Orkney and Nottinghamshire); I thank the agencies and Voluntary Organisations and Support Groups that have supported my mother and supported me, as her carer, over these years of her increasing need. Particular acknowledgments go to the residents of the island of Graemsay, who loved and supported Avril in her own home and the place she adored.

I also want to acknowledge the commitment, sacrifice and practical love shown by all you millions of carers, who make such a profound and positive difference in our society – especially to your family.

You carers are the heroes. I dedicate this book to you.

Introduction.

Carers Trust 2012 – key facts:

  • There are almost seven million carers in the UK – that is one in ten people. This is rising.
  • Three in five people will be carers at some point in their lives in the UK.
  • Over the next 30 years, the number of carers will increase by 3.4 million (around 60%).
  • The number of people over 85 in the UK, the age group most likely to need care, is expected to increase by over 50% to 1.9 million over the next decade.
  • Alzheimer’s disease is the most common form of dementia affecting around 496,000 people in the UK.

Over these past few years I have met some fantastic carers – ordinary people who have answered ‘yes’ to a call of duty and compassion for a loved one. Many have sacrificed careers, livelihoods and their life as they knew it, to care for parent, child or spouse.

This book is an in depth picture of the journey through dementia. This is the main focus.

I wanted to record what it was like to be the main carer for a person with Early-Onset Dementia – a carer’s memoirs, about ordinary, unique people and their very special relationships. It is a snapshot of the journey, not just of the sufferer and carer, but of the dynamics and issues faced by the whole family and friends mourning the gradual loss of the loved one.

My mother – Avril – will be the main focus in this story, but you will become briefly acquainted with some other fabulous people. The fact that they do not feature in detail in the book does not mean that they do not feature in a big way in my life.

It is a story of tragedy, guilt, loss, hope, forgiveness, love and choices. It focuses not only on what the carer sacrifices, but about what else they gain as they embrace such a journey.

My mother and I were never very close. She disowned me when I was 17 and kicked me out of her home. Now I have taken her into my home and become a mother to her.

It is important to say that this is not a story of blame or gossip, but one of forgiveness, healing and an acknowledgment of the frailty and beauty of what is to be human. There are no real villains in this story.

Whether it is Mum’s story or mine doesn’t really matter. It is our story; our journey, but you obviously discover it through my eyes. It is precious and written with love. It may make you cry, but I hope it will make you laugh too and give you hope.

Not all of you will be caring for someone with dementia, as I am, butI want to encourage you, if you are a carer, to find all the support that you can get, to make your life, as a carer, as comfortable as is possible.

Appendix 1 contains an array of facts about dementia – like who gets it and what it is.

In Appendix 2, I have given information and contact details to help you to navigate some of the invaluable support services that have made this part of my journey much more bearable.

Appendix 3 contains some of the personal tributes written for her funeral.

The story is true, but most proper names have been fictionalised for their privacy.

            It is not how we die, but how we live that matters.

Prologue

We all forget things from time to time. We forget a birthday, lose the keys, walk into a room and forget what we came in for. It is normal. We ‘rack our brains’ for that word ‘on-the-tip-of-our-tongue’ – we know it’s in there somewhere, but sometimes we have to ‘dig deep’.

So we write notes, keep diaries, calendars, tallies, address books; we write memos, take photographs, buy souvenirs – a whole industry of ‘aide memoirs’ available to make sure we remember those things that are important to us. But that is not because we have dementia, or because we are stupid; it is because our lives and brains are so busy and so preoccupied with processing such immense amounts of information. Dementia is very different.

So I am trying to determine now, in retrospect, when Mum’s dementia first became apparent.

Mum was by nature a bit scatty and nearly always late for something. She was “four foot eleven and three quarters” and always a slightly bonny lady, with short legs, a pretty face and long brown wavy hair. She was outwardly friendly, quite capable practically, always busying, stubborn, long-suffering and self-contained. My father was comparably very tall, also handsome, fair-haired and dangerously unpredictable. Outwardly a quiet man, a ‘dark-horse’, he was a depressive, who avoided the company of others. He was very talented as a mechanic and a maker of things, but was uneducated and had no confidence in his abilities.

Mum and Dad moved from Nottingham in 1987 to a little croft on Graemsay, a small island in Orkney.

The Good Life on Graemsay

Having started a family very early in life, by the age of 36, their two children, Debbie and I, had both left home.

There were about 23 people living on Graemsay when my parents moved there. They had a two roomed croft, land (including some of the beach), a huge barn, byers, ‘bothies’ and a well. There was no running water or electricity at the croft, and no shop, church or amenities (except the Post Office) on the island. There was a boat running three times a week over to Hoy and to mainland Orkney. In the middle of the island near the school (which was open for only one child at that time and has since closed) there was a telephone kiosk. For provisions, one had to phone an order from the Mainland shops and wait for the boat to bring them over.

Mum grew vegetables and they lived a frugal ‘good-life’ in this remote corner of the world.

In April 1995, aged 49, Dad died, just 5 days before Mum’s 49th birthday. They had been married for 32 years.

Dad’s sister Monica went to keep Mum company in 1996 and lived there for two years. She found Mum ‘very mean spirited and childish’, but in retrospect she thinks that it was the first signs of the disease affecting Mum’s behaviour.

When it began I am not sure.

“Not firing on all cylinders”; “The wiring has come loose”; “Not the full ticket”; “muddled” – these were some of the expressions used to describe a noticeable change in Mum by early 1999. She began to lose everything, even herself on several occasions. She was 52 years old. 

Her sister, Julia, first noticed that something was wrong with Mum as early as 1996, when Mum stayed with her in Nottingham. In total Mum missed five connections on that journey from Orkney to Nottingham. Several times that week Mum went visiting friends, but forgot to come back for dinner or say she was going out. Julia did not suspect Alzheimer’s, but she knew that Avril was not her usual self. That was already 11 years ago.

In February 1999, Mum came down to London to help me look after my children. I was a single mum and a full time primary school teacher. Mum stayed with me for a couple of weeks. One very rainy day in school I was distracted by a bedraggled sight out of my classroom window – Mum was standing in the playground with Conor in the pushchair – both of them soaked. Mum was crying because she had not been able to get in my front door. At the end of her stay with me she was to catch the late coach up to Nottingham. A friend dropped her off in Victoria, but three hours later, in the early hours of the morning, my doorbell rang and I found a very frightened, tear-stained Mammy.  She had the wrong day. Instead of phoning me, she had started to walk the streets of Victoria, her luggage in hand, with no idea where she was going. After being stopped by a few  strange men, she began to panic, but fortunately had had the wherewithal to hail a cab.

Back in Nottingham she was staying with Julia again. It was quite obvious to her by now that there was definitely something wrong with her Av. Julia returned from work on two occasions to find her front door wide open. One evening Mum did not return from her day out, but eventually, about 10pm, a kind man unknown to them phoned Julia to say that a very lost Avril had knocked on his door. A few days later Mum did it again, this time knocking on a different stranger’s door. She clearly had no sense of direction and was struggling with coordination.

She would get very frustrated with her mistakes and would chide herself constantly for being ‘a stupid woman’.

I didn’t see enough to be concerned from that distance. Mum did not sound troubled in general and usually spoke on the phone with humour and sense. In Orkney she was safe. I always thought that dementia happened to ‘old people’. My definition of ‘old’ changes year by year as I grow older, but I never suspected that dementia could begin in someone in their 50s.

I did not see her again until I went to Graemsay in the Summer of 2001. By then Mum’s ability to balance the books was suffering. Mum had had the job as Post Mistress on Graemsay for several years. One morning whilst I was there, the total morning’s business had been the sale of one stamp. Instead of dealing with that logically, she tipped the whole bag full of stamps onto the floor and began to count them all. She repeatedly lost count and spent several hours becoming more and more frustrated with the task and with herself. But she would not take any advice.

Over the next few months a friend on the island began to take over the book-keeping, as Mum would have the day’s accounts thousands of pounds wrong.  The people of Graemsay were very patient and good to Mum. I am very grateful that they enabled her to stay in her beloved home for so long. Eventually she was asked to resign from the Post Office.

I don’t know when Mum was actually diagnosed with Alzheimer’s, but she was already taking Aricept, prescribed by a consultant, in 2002 (aged 55).

I visited again in 2003 – Mum could still just about play the guitar and we enjoyed a memorable sing-along. I also witnessed the demise of her treacherous driving. She refused to wear her glasses, despite seeing nothing through the windscreen. I got into the car with her and as she reversed up the path, foot down hard, wheels screeching, suddenly the front of the car strained and ripped off, pulling half of the lodged dry-stone wall from its ancient site. I was not sorry to see the end of the driving.

Mum could no longer follow the rules of the game

After that Mum began to exhibit more signs of confusion and disorientation with time and space. I began to get phone calls from concerned residents on Graemsay, informing me of peculiar incidents.  She would wander the island and turn up at other houses in her nightwear, sometimes ‘just visiting’, in the middle of the night. She had lost all sense of time and would forget to eat or drink, or forget that she had just eaten. There were reports of stores of food gone bad. Were it not for the cats, the place would have been infested with vermin.

As Mum’s condition became more desperate, I finally began to wonder what I should do. Her writing was deteriorating, cards becoming a thing of the past. She no longer called us, we phoned her.

I arranged Community Care Services for her on the island, providing her an hour’s daily home help. There could only be limited resources on an island of 23 inhabitants. I knew they were a little ‘put upon’ and worried about her, but what could I do? She always said how lucky she was to be somewhere so safe and quiet and beautiful…I could hardly stick her in my flat in London could I?

What was the worst that could happen? She could leave the gas on; put something on the storage heater at night; go out in her nightie, fall in a ditch and die of hypothermia…

Lots of potential dangers, as there are for all of us. It was easy to minimise these concerns a thousand miles away. Mammy was happy there.

I went up again in 2005 – she was unkempt and smelly and quite dependent on others to cook, clean and order her life. But I still felt unable to help. It was her life and I had nothing better to offer her.

In August 2006, two months after our marriage, Simon, me and my family moved into this large Victorian in Nottingham. We invited Mum to stay for Christmas. She was fully escorted, by Roger and myself, door to door. Whilst she was here, Orkney Social services phoned me to say that Mum would now have to go into a home.

Mammy could not even pour herself a glass of water.

I had no excuse and no choice but to keep her with us.

She had to stay here until we could find somewhere local and safe.

She would not be able to return to the home she loved.

Like the rest of humanity, I have no idea what the future holds, so we have to take one day at a time and do our best…