MICHELE GIERCK is a writer, an inspiring speaker and an educator. Michele’s books include 700 Days in El Salvador and Peter Kennedy: The Man Who Threatened Rome (co-authored with Martin Flanagan). Her work has featured in The Age, The Australian, Eureka Street and many other publications, and Michele has spoken on ABC radio programs across Australia. Passion, justice, community and human spirit are central to her writing, her public speaking and her life.

A NewSouth book

Published by

NewSouth Publishing

University of New South Wales Press Ltd

University of New South Wales

Sydney NSW 2052

AUSTRALIA

newsouthpublishing.com

© Michele Gierck 2015

First published 2015

This book is copyright. Apart from any fair dealing for the purpose of private study, research, criticism or review, as permitted under the Copyright Act, no part of this book may be reproduced by any process without written permission. Inquiries should be addressed to the publisher.

National Library of Australia

Cataloguing-in-Publication entry

Creator: Gierck, Michele, author.

Title: Fraying: Mum, memory loss, the medical maze and me/Michele Gierck.

ISBN: 9781742232331 (paperback)

9781742241913 (ePub/Kindle)

9781742247175 (ePDF)

Subjects: Gierck, Michele.

Gierck, Jean.

Dementia – Patients – Biography.

Dementia – Patients – Family relationships.

Caregivers – Family relationships – Biography.

Memory disorders in old age.

Dewey Number: 362.1968310092

Design Di Quick

Cover design Sandy Cull, gogoGingko

All reasonable efforts were taken to obtain permission to use copyright material reproduced in this book, but in some cases copyright could not be traced. The author welcomes information in this regard.

This project has been assisted by the Australian Government through the Australia Council for the Arts, its arts funding and advisory body.

CONTENTS

Chapter One

Chapter Two

Chapter Three

Chapter Four

Chapter Five

Chapter Six

Chapter Seven

Chapter Eight

Chapter Nine

Chapter Ten

Chapter Eleven

Chapter Twelve

Chapter Thirteen

Chapter Fourteen

Chapter Fifteen

Chapter Sixteen

Chapter Seventeen

Chapter Eighteen

Epilogue

Reflection and resources

Acknowledgements

For John, who makes all the difference

CHAPTER ONE

Fraying at the edges

September, 2009 My mother is a woman who likes company. It relaxes her. Unfortunately, having reached eighty-eight years of age, she has outlived her husband, her siblings, and many of her friends. Yet she still enjoys banter, and a daily dose of brandy. If asked, she would deny drinking before 5 pm. But a bit of brandy in a glass, topped up with warm water, in my mother’s view isn’t really drinking. It’s medicinal. Drinking, officially speaking, occurs after 5 pm, when the brandy is served on ice with dry ginger ale.

This morning, however, it’s me who feels like swigging brandy. And it’s only 7 am.

The phone rings. The voice on the other end of the line is anxious. It’s Mum. (She doesn’t call me often, and never this early.) ‘Michele, I know it’s early, but …’ She has just remembered she has a 10 am appointment at a public hospital which is a little too far for her to drive to. But we already have a 9.30 am medical consultation with her general practitioner, a most important extended appointment, and there’s little chance of changing it without then having to wait another week.

Since I’m recuperating from injury, unable to drive, and my mother refuses transport by taxi, the solution is not simple. Realising I can’t get her to both appointments, I try to think of a remedy. However, a state of vagueness seems to have enveloped my brain.

Half an hour of early morning phone calls, waking friends only to discover the details of their hectic schedules, does little to alleviate rising angst. My mother, who has undergone many operations, from thyroid and caesarians to open heart surgery, understands the importance of keeping hospital appointments and how long you may be forced to wait in the public health system if you miss one.

Eventually, a volunteer is located; one who will drive Mum to the hospital and then collect her. Meanwhile, we agree that I will meet with her general practitioner and begin the conversation about my mother’s memory, which seems to be fraying at the edges like a poorly sewn seam.

My mother and I both know about seams. Mum was a milliner who began her apprenticeship at Melbourne’s prestigious George’s department store, on Collins Street, at fourteen years of age. Not content just to craft hats, she designed them too, fastidiously. Her belief that the inside of a hat, lampshade, curtain or dress – all of which she made and could be found in our family home – should look as smooth and stylish as the outside was one she routinely put into practice.

I can see Mum sitting in the kitchen, her back to the northfacing window, the curtains pulled back, the bland-coloured venetian blinds hoisted. Spread over the white laminex table with black edging is a plethora of pins and needles, a small cane sewing box with red lining, an old biscuit tin packed with buttons – some with a flat finish, others that sparkle or shine – and my mother’s treasure, her lime-green sewing machine. ‘Husqvarna Automatic’ is emblazoned across the front in yellow letters; Automatic is written in italics, as if emphasising the class of this electric machine. My mother, leaning forward in her chair, works the pedal and the four dials on the right side of the front of the machine with the agility of a racing car driver changing gears. Set the size dial, press the pedal, sew, stop, turn the zigzag dial to the left, foot on the pedal, sew, stop, twist the on-the-same-spot sewing button so the last stitch is extra sturdy, stop, pick up the scissors, cut any loose threads, and then repeat.

By ten years of age, under my mother’s strict tutelage, I made my tiny doll – half the size of Barbie – a blue-spotted pants-suit in which the inner and outer garment managed to pass my mother’s scrutiny. Now, however, decades later, Mum is under my gaze. And I’m wondering what is causing the relatively sudden fraying of her memory, and if there’s a way to overlock all those fine, intricate neural threads before too much of her memory unravels.

The half-hour walk to the doctor’s clinic through one of Melbourne’s picturesque parklands is calming. A pleasant background noise – the musical chatter of the birds – reverberates between the tall, sturdy trunks of the eucalyptus trees. My favourite, the gumnut trees, however, are outside the park. They line the street of my destination, standing like a natural guard of honour. With their umbels of bell-shaped seed pods that pop their tops and radiate a delicate skirt of red, pink or cream stamens, the gumnuts are exhilarating when in bloom.

The doctor’s waiting room, however, is not exhilarating. It is functional, with a profusion of pictorial matter, most of which has a bedraggled, often-flicked-through look. My mother is a regular at this busy clinic.

The doctor, whose advice my mother heeds without question, ushers me into his consulting room.

‘I was planning to come with Mum, but she accidentally double-booked appointments this morning,’ I begin.

My concern, I explain, is about my mother’s memory. The general practitioner listens and types.

‘Mum’s getting confused with dates and times.’

This morning is a fitting example. The doctor too has noticed that his patient has missed a couple of appointments.

‘Most unlike Jean,’ he responds in a considered tone. ‘Could you come back next week with your mother?’

‘I’ll tell Mum you want to see us both.’

I walk home glad that a first step has been taken. But down which path we are heading I can only speculate.

In the afternoon, I ask, ‘Mum, how are you? How did you go at the hospital this morning?’ It turns out there was no hospital appointment at 10 am, nor is there one scheduled.

Realising my mother is struggling to organise and attend appointments, and that this may be an ongoing difficulty, we decide that I will write all her medical appointments on a new calendar in the kitchen. Mum also moots the idea of me accompanying her to medical consultations. So long as they are on Wednesdays or Thursdays – days I work from home on writing projects this year – that’s fine. She seems pleased, perhaps relieved. (I do have an older brother, but perhaps because in my mother’s world view caring falls heavily within the female domain, it seems that I have been elected to accompany Mum on her medical sojourns.)

Although the day did not turn out as we had planned, it was the day on which the official investigation into the fraying of Mum’s memory began.

Getting to this point had required lashings of tact and diplomacy on my behalf – qualities with which I am not particularly well endowed. However, devising a strategy in which medical consultations were part of a ‘stay stronger and independent for longer’ campaign proved effective. It certainly appealed to my mother, a woman who has lived on her own for the last fourteen years, since my father died, and who continues part-time work. Remaining independent is an essential part of who she is. And she doesn’t just want her independence – she wants to enjoy her life.

Seven months ago, Mum drove herself to an afternoon tea at my home – a distance of about 5 kilometres from her place – arriving well-dressed in a lovely bright floral shirt and cream slacks. What’s more, she had made a trifle, carefully packed it into the car, and arrived at my front door with the delicious dessert in hand. She then chatted to the assembled array of friends and neighbours, laughed, drank a couple of glasses of wine and had a merry afternoon. One of my work colleagues, who had never met my mother before, was impressed by her exuberance and the fullness of her life, which she recounted without hesitation to any listeners.

The only hiccup that day was the trifle. Seeing that it hadn’t set properly, and realising that she had left an ingredient out, my mother was mortified. At the time it seemed my mother had just been in a hurry and forgotten. Now, however, I wonder if this was one of the first signs of fraying.

We need to be sure

My mother may have some confusion with dates and new appointment times, but Monday to Friday during school terms her morning routine is as regimented as an army drill.

At 6.10 am precisely, her bedside alarm rings. It is the acoustic cue to get up, put on her burgundy slippers and pale pink dressing gown, turn on the heating if required, then open the blinds and curtains in the lounge room and kitchen, before beginning a showering and dressing routine which is not to be disturbed.

Mum’s has retained her classic figure (petite waist, abundant bosom, luscious hips), yet her blonde, wavy hair and even her eyebrows are no longer natural attributes. Yet in an attempt to banish the claims that almost nine decades of life have made on her, each morning after a dose of bran and freshly squeezed orange juice, she stands in the kitchen where the morning sun streams in the eastern window, and, facing a westerly direction, she looks into a mirror on the shelf just above the kitchen sink. Staring across the bridge of her nose, she applies foundation, sketches on brown eyebrows that match her ‘saucy beige’ hair colour, then adds a fingertip full of eye shadow to each eyelid. A metal blue colour, the shadow extends from eyelid to eyebrow and is often smudged beyond the boundaries of the application zone.

At 7.55 am she drives her old green Laser from the backyard garage to the side of the house, near the front door. After making any last minute checks, she then drives along the narrow cement driveway, turns right and heads down the hill, navigating a maze of back streets that an astute paperboy would have difficulty committing to memory.

At 8.10 am, having parked the car as close as practicable to her workplace, my mother takes out a white coat with an orange sash and a white hat with the word SUPERVISOR imprinted on it, and puts them on. On a string around her neck is a whistle. Once she used to carry a STOP sign, but that was made redundant once she began working on a school crossing with traffic lights.

‘Hello, Mrs Gierck,’ the children call out as they approach their school crossing supervisor, whose hearty greeting and comments are cheerful, upbeat and, at times, inquisitive.

‘How are you this morning, Joshie? Where’s your little sister?’

Her sternness is reserved for those who transgress crossing rules. But there are few who dare.

When the crossing supervisor returns for her 45-minute afternoon shift, many of the children can barely wait to tell Mrs Gierck what’s happened at school that day. She knows most of the children by name – and their parents. Having accompanied so many primary school children across the crossing, my mother now takes care of the progeny of the children she first looked after decades ago.

Being a crossing supervisor is not just a job – one my father wanted her to give up when he retired, but she refused. Since his death in 1995, Mum’s been thankful to have something that makes her want to get out of bed each morning. It’s an integral part of her identity. This particular crossing supervisor has become a local legend. It’s official, at least according to two recent articles in the district newspaper.

In a photograph accompanying one of those published articles, my mother has a huge bunch of flowers (gerberas, lilies and irises) in one hand, and a round orange stop sign in the other. Dressed in a pale pink jumper, she has freshly applied her blue eye shadow. There’s a surprised look on her face; her mouth is gaping. The caption under the photograph informs readers that Jean Gierck was given a surprise thank you by the council which employs her.

However, if my mother is going to continue working with children, we need to be sure that she is healthy enough to do so and not putting any lives at risk.

The GP, Mum and I are in the same room at the medical clinic. The patient is pensive. It is time for her to submit to a mini-memory test.

The doctor, who knows his patient well, begins the test casually. What’s your full name? Where do you live? When these and other questions have been answered, the doctor asks his patient to fold a piece of paper and place it on the floor. My mother does so immediately. She is then asked to remember specific words, to draw, and then to recount the words. There’s also an opportunity to count backwards. Finally, she is asked to write a sentence.

‘What sort of sentence?’ my mother asks, in a nervous voice.

‘Any sort of sentence.’

‘I, Jean Gierck, hope I pass this test’ is the line that appears in blue pen in legible script on the sheet of white paper with the ‘I’, the ‘J’ and the ‘h’ looped at the top of the letters.

The doctor’s assessment is that Jean has a lost a little of her edge, but she’s reasonably good. He will send her off for a blood test and a brain scan, and, depending on the results, to a memory clinic. In the meantime, he thinks she’s fine to keep working and to drive within her local area. He also helps me complete the forms requesting an aged care assessment. Without it, Mum will remain ineligible for services which could assist her.

I think Mum has lost a little edge too, in a good way. She’s not quite so independent, so stoic that she has to battle on and do everything herself. She’s allowing herself to depend on others. She’s softening a little and it becomes her.

Protocols, policies, paperwork, jurisdictions …

October, 2009 My mother and I must navigate our way through a system full of protocols, policies, jurisdictions, paperwork, tests and queues. Mum is certainly glad I’m accompanying her. And so am I, which is most fortunate. However, I might not always have felt this way.

The mother–daughter relationship is so dynamic, so entangled, so prone to knots. Well, it certainly has been in our case, particularly during my teens and mid-twenties. But regardless of how tangled or tattered it became between my strict Catholic mother and I – like the time I brought home an Arab-African-Muslim fellow to our family Christmas celebrations, and months later announced our engagement – no matter how furious or frustrated I was with my mother’s reactions (including her joy when the engagement did not turn into marriage material), as soon as she was seriously ill, I immediately joined family, friends, and the local church community, supporting her.

Fortunately, as I made my way in the world, living interstate (in the corporate world) and then overseas (working in a war zone and later immersed in post-war reconstruction in El Salvador), sparks of camaraderie between Mum and me became apparent. And these days we actually enjoy each other’s company. Well, most of the time.

Now, however, since Mum’s health is declining, and my father is no longer alive, I am preparing for a significant role accompanying my mother. What’s more, I feel sure my father would have expected no less of me.

Mum now mentions the house getting too big for her (she means it’s too much to look after) and even raised the idea of going to a Catholic place to live. But she doesn’t know who to ring. Part of me wants to tell her that I don’t have this information either. I’m still trying to find out about the D word – ‘dementia’. Mum has not been diagnosed yet, and the doctor warned me not to sell her house and have her move now as she requires assessments to work out what type of living arrangement she might need. I tell her that in January, when I have holidays, we’ll go looking at places together. That should give me time to figure things out.

Speaking to a National Dementia Helpline counsellor is enlightening. The counsellor introduces herself and asks a few questions about Mum and her lifestyle. My answers create a picture that she’s soon able to interpret. While Jean has a wide community network, from the local church to friends and neighbours as well as extended family who often visit, I suspect most of her medical consultations and care will be my responsibility. With a wavering voice, I add, ‘Mum and I did visit her doctor a couple of years ago to discuss an advance care plan.’ (This plan would give doctors guidance if my mother was unable to communicate her wishes. In other Australian states they are also called advance health directives.)

‘She made it clear she did not wish to be resuscitated if there would be little or no quality of life.’ And with that I burst into tears.

The woman on the other end of the phone is reassuring. Feeling overwhelmed, I’m told, is quite a natural reaction. When I have calmed, she begins to answer all my questions, explaining the physical, social and emotional ramifications of accompanying someone through the combination of ageing and memory loss. Considering the density and volume of information explained, my handwritten notes are remarkably clear, even though they are full of dashes, dot points and arrows that sweep down the left margin of the page.

I have now figured out that there are different types of dementia: vascular (caused by damage such as a stroke) and Alzheimer’s (a disease); that people with the early stages of dementia are often fine with routine (like my mother working on the school crossing) but not with new things, like dates and appointments. The counsellor suggests an assessment by Jean’s GP and also promises to send out the guide to aged care facilities. (We used to call them old people’s homes, didn’t we?) What’s more, I’m informed about the services of the Aged Care Assessment Team (ACAT) and the Cognitive, Dementia and Memory Service (the memory clinic). My notes indicate that if dementia is the diagnosis, medication may be prescribed which can, in some cases, slow the process down. That in itself is enough reason to go ahead with all the tests.

There’s so much to make sense of: a new vocabulary, new acronyms, new services, and a new file for all my scrupulously taken notes. I will keep it easily accessible. While the volume of information I’ve recently researched has been massive, the relief of talking to someone who understands what’s going on, not simply reading information, is not to be underestimated. Yet not all of the assistance comes from institutions or organisations.

My cousin in Newcastle is a great source of support and information. And she speaks from experience. Her mother, my father’s youngest sibling, went into hospital for knee surgery. It was a straightforward operation with unfortunate consequences, my aunty suffering a post-operative stroke and permanent paralysis down one side of her body. She’s had to live in a high-care nursing home ever since. Sadly, her memory and cognitive skills have deteriorated too. And that deterioration is relentless.

My cousin has been so committed to her mother, at first visiting twice a day. How she fitted in full-time work I have no idea. However, when staff noticed her tiredness, they suggested visiting once a day instead. Now, five years later, she even allows herself to have every second weekend off.

When I describe how Mum gets confused with dates and times, my cousin immediately responds that money might be one of the next difficulties. (I like having an idea of what to look for; of what to expect.) I begin taking notes when my cousin mentions guardianship documents. My mother has organised her powers of attorney, but I doubt very much that guardianship has been included. Apparently many aged care residences require that document, and without it getting a place in care would be extremely difficult.

‘Michele, you need to make sure it’s organised while your mum is still capable.’

That evening the words of the counsellor from Alzheimer’s Australia – that primary caregivers often feel they are way behind where they need to be – reverberate.

A few days later, a pack of brochures about aged care arrives in the mail with enough information to swamp me. I’ll have to digest it little by little. However, now having an idea of the next step, I’ve already contacted an aged care assessment team and a memory clinic. I can start the ACAT application myself, and Mum’s general practitioner can streamline the memory clinic referral.

Investigations begin

There are two medical appointments on our schedule today, so there is no time to stroll, no time to take the longer, more relaxing walk to the bus stop through the park. My feet pound the cement pavement as I walk with some pace beside the main road, trucks roaring past less than 2 metres from my being, their noise and pollution assaulting my senses.

Travelling by bus from where I live to the eastern Melbourne suburb Mum lives in, where I grew up decades ago, takes only about fifteen minutes, depending on traffic. However, it’s a further fifteen-minute walk from where the bus stops to my mother’s home – a triple-fronted cream brick-veneer suburban house with a blooming pink and white magnolia tree beside the letter box.

Inside the family home, there are old black and white photographs of my parents’ home being built. In one photo, the house foundations have been laid, but only one wall of the wooden frame is upright. You can see through it to other houses way off in the distance, up on the undulating hills. No roads are apparent. Mum once told me that watching each part of the frame and brickwork take shape was like watching the building of her dream. Mum’s family had lived in rented accommodation all their lives, and even before she was married my mother never concealed her intention or determination to own, along with her husband, their own home.

I begin to wonder what’s going to happen to the family home if Mum is no longer able to live there. However, it’s a thought I keep to myself. As the doctor reminded me, it’s time for investigations, not decisions.

When I arrive, Mum is waiting in what she still considers to be the hub of her house – the kitchen. Her car is parked in the driveway near the front door. Today, with the aid of a back rest and another cushion to prop me up, I will drive. Our first appointment is a brain scan.

The medical centre is modern and the radiographer is a delightfully friendly woman who takes a keen interest in her patient. Although I am seated in the hallway as the test takes place, the door is open, the conversation audible. ‘I’m a school crossing supervisor, I’ve been doing it for twenty-nine years, and I’m eighty-eight, turning eighty-nine.’

Some grandmothers introduce themselves by way of their family and their grandchildren, or the work they used to do; but not my mother. She is committed to the present tense, talking about her job and her age with such absorption that, just as with this radiographer, she frequently receives delighted responses.

Mum’s real interest today, however, is the brain scan. After it is completed, we take the elevator downstairs to a café, to give whoever reads the scan time to review it and write the report. My mother, who never once drank coffee when I was a child, now enjoys a cappuccino. I suspect it’s the chat rather than the coffee which appeals to Mum.

In the course of that cup of coffee, I realise it is not only the radiographer who is undertaking investigations. Two things I would normally not have had the opportunity to notice about my mother become apparent. Firstly, Mum cannot quite get her bearings, even though it is a familiar area.

‘That’s Coles, just across the road,’ I point out. It’s a Coles supermarket my mother shops in from time to time.

‘Oh, yes,’ she responds.

However, I’m not sure if the oh yes is real recognition or a cover-up. Secondly, when she insists on paying for our drinks, she gives me a handful of coins which would barely cover the cost of one cappuccino. And immediately I think of my cousin’s words: that the next skill to wane might be calculations or money-handling. Not that I say anything. After all, they could be simple errors. However, it’s time to document some of my own observations, rather than simply relying on medical reports.

When we return, I collect the scan and the radiographer’s report in a large white envelope, and we walk towards the lift.

‘Have a look, see what it says,’ implores Mum, who, when standing, is now barely up to my shoulder. Age seems to be robbing her of precious centimetres.

It is only then that it dawns on me how concerned she’s been about a brain scan.

‘I’m not a doctor, I can’t read those reports.’

‘Go on,’ she says.

I pull out the report and read, trying to make sense of a language I’m not trained in.

‘Well, I’m not sure, but it seems to say you’re okay. There’s nothing unusual that they found.’

My mother seems thrilled. I’m not sure why. I thought it was a routine test.

Two hours later we’re back visiting her GP. Neither of us mention that I have skimmed the report. We wait while the doctor reads and then interprets the report for us. He announces that there is no tumor, no apparent vascular problem. We glance at each other like conspirators in a crime.

Before we leave, the doctor must also examine his patient’s foot. A lump on the top of her foot, close to her smaller toes, has been scraped by a surgeon to check if it’s cancerous. It’s a bit red and it must have a new dressing each week to protect against infection.

‘Let me see your foot,’ says the doctor, as Mum takes off her sock and thrusts her right foot forward.

The doctor is impressed. The wound has healed very well. With that, the patient puts her sock and her shoe back on and we head home.

That night, I wonder about the remarkable recovery of Mum’s foot. I have a fleeting thought – did she show him the correct foot? The thought, however, is soon expelled from my mind.

Next evening, while making vegetable risotto for my mother – a regular weekly event in which the day, but never the recipe, changes – she sits in her kitchen and we enjoy a glass of brandy. (Brandy and dry for my mother; brandy, lime and soda for me.) In the course of the conversation, as I’m stirring the zucchini and tomato risotto, TV blaring in the background, she pipes up, ‘You won’t believe it, Michele. Yesterday, I showed the doctor the wrong foot.’

I can’t believe it. And yet I can. I pick up the phone, ring the doctor’s rooms and the next appointment I can get is in two days’ time. This time it will have to be after work. And perhaps, if my partner is not away doing fieldwork, he can drive us there.

Ratings

Wednesday, 21 October 2009 ‘Do you know why I’m here, Jean?’ asks the nurse, who, seated in my mother’s kitchen, begins an aged care assessment.

‘To check my memory,’ is the instant reply.

It’s a natural conclusion. Mum’s memory has been the subject of conversations with her GP and her two children over the last few weeks.

‘No, to see what assistance you may need.’

‘Oh.’

A few minutes pass. The assessor’s laptop is now set up on the kitchen table.

‘I’m going to ask you quite a few questions so I can get to know you,’ says the nurse, who has pages full of blank squares and boxes to complete.

An unaccommodating spirit of bureaucracy begins to permeate my mother’s sun-filled kitchen.

‘Do you think you have a problem with your memory?’

Peering through her glasses like a professor giving a considered opinion on a controversial issue, Mum begins, ‘No. I don’t think so.’ Then, in a defensive tone, as a kind of verbal postscript, she adds, ‘Others might disagree, Michele might like to say something, but I think my memory is pretty good.’

Seated across the room in a self-imposed exile – I’m under strict orders to stay as far away from Mum as possible with my treacherous flu – I interpret the two faces now staring in my direction as a cue to contribute.

The dialogue between the nurse and my mother has reached an impasse. That is the problem with closed questions: there is a 50 per cent chance of getting the answer you want (in this case, yes) and the equivalent possibility of getting the answer you don’t want: no. And the latter was not the answer the nurse was hoping for.

As any sailor knows, when the boat’s not going anywhere, it may well be time to implement a new tack. My tack in the current stand-off focuses on lexicon – which words to use and, more importantly, which words to avoid. You don’t need to have done first year psychology to realise that any register in which the words ‘problem’ and ‘memory’ are partnered, prioritised and personalised can, for many people, not just my 88-year-old mother, be threatening. Mum’s memory is under scrutiny and she is in no doubt about the threat to her independent lifestyle that even the most benign of medical assessments might pose. Accordingly, her blood pressure rises.

‘Mum, remember how you went to work on the school crossing on the Sunday instead of the Monday at the start of term?’ A question bordering on the rhetorical.

‘Yes.’

‘And how, on my fiftieth birthday, in May, I had to write down the two dinner dates on your calendar, and you were a bit unsure about them. You had to ask me several times about when they were?’

‘Yes.’

‘Well, that confusion you feel at times, that’s what the nurse means.’

‘Oh.’

The interview proceeds. The nurse notes as much as possible, including the fact that Jean is totally deaf in her right ear. I don’t know if there is a column in the official documentation called ‘fabrication’, but if there were one, it would have a few ticks in it already. Mum is not one to let the truth inhibit a good tale.

‘Yes, I always turn the light on at night when I get up to go to the toilet … No, I don’t drink much at night … No, I don’t fall asleep in my chair at night. I always go to bed around 9.30 pm.’

Had the adverb ‘always’ been replaced by the verb ‘try to’ the account may have intersected with reality. Fabrication, I fear, soon becomes fact on the aged care record of Mrs Jean Gierck.

Mum is then informed that she will be given a mini memory test. In one part of the test, the nurse will say three words – ‘car’, ‘ball’, ‘man’ or monosyllabic words in that vein – that my mother must repeat immediately, then repeat minutes later.

Mum, however, cannot repeat the words after first hearing them. She tries, but cannot reproduce the sounds. (Although not an issue for me, there seems to be an aspect of the assessor’s diction my mother is struggling with.) And how can she reproduce a sound when she’s not sure what she heard? The frustrated tone of the nurse – ‘You’re not listening to me’ – does little to alleviate the situation.

Stress, I know, will only make any hearing difficulty Mum experiences escalate. ‘Ball’ is now becoming ‘mall’ or ‘call’ as my mother, who has to turn her head, looking away from the speaker, so that what is said is received in her good ear, has now lost all visual cues essential to effective communication. Under these difficult circumstances, by my own reckoning, if she gets two out of three correct, Mum should be awarded top marks.

When the test is concluded and the scores added, the nurse explains that my mother has scored twenty-two out of thirty.

‘That’s pretty good,’ Mum chirps with a sense of pride.

‘Well, no, it’s not … It indicates you have problems with your memory.’

The nurse has embarked upon a direct approach.

Yet it is plainly clear to my mother that twenty-two out of thirty is a good result; it is way past a pass in anyone’s language. So she lets her assessor know.

My mother is a woman who likes numbers. She has long understood what you can do with them; not simply adding, subtracting, multiplication and percentages, but the images they conjure. As a child I often saw her sitting at the kitchen table, the northern sun warming her back, trying to make thin numbers (like my father’s wage) cover immense areas like the home loan, the utilities bills and even holidays. She had a yearly budget, neatly planned and committed to paper, from which she dared not deviate. Her Sunday morning banking at the local church co-operative kept her securely within the bounds of her fiscal restrictions. Mum made manipulating numbers an art. Numbers were a testimony to her inventiveness and resourcefulness. If she hadn’t been so skilled in balancing family finances we might never have owned our own family home.

As the assessment draws to a close, not quickly enough for the interviewee, we go outside and walk around her car. The nurse is attempting to suggest my mother needs a driving test. But there is little point. After observing the low-intensity conflict between the interviewer and the interviewee over the rating attributed to twenty-two out of thirty, my mother and I are privy to vital information the nurse seems unaware of. The stoic, iron-willed eighty-eight year old is no longer interested in anything her assessor has to say. Soon after arriving at my mother’s home the nurse was advised that Mum was deaf in one ear. But that deafness, over the course of the last ninety minutes, seems to have increased dramatically. Anything the aged care assessment nurse says is now falling on two deaf ears. My mother has made sure of that.

CHAPTER TWO

The memory clinic

Late October, 2009 The memory clinic is a special diagnostic unit. It caters specifically for people with memory loss or changes to their thinking processes. And the hope is that the geriatricians and other medical specialists here will not only be able to diagnose Mum, but suggest strategies to assist and support her. I am not sure how my mother feels, but it is with some trepidation that I turn into the corridor leading to reception.

My mother hands her appointment letter to the receptionist then takes a seat, placing her old faded handbag beside her. I prefer to stand and read my book as I am struggling at the moment with prolonged sitting. The only other people waiting in the clinic are a husband and wife. They are far younger than my mother, perhaps in their early seventies. The wife is wearing a dark skirt and a cream cardigan. The husband, a man with a slight frame, is neatly attired in long pants and a check shirt. He begins talking to his wife in a low, accented voice, explaining that they will be seen soon. Does she want anything? She nods. It’s a negative nod.

I glance back at my book but my eyes refuse to scan the words on the page. Instead, they are wandering. How distressing it must be to watch the partner you have loved for decades deteriorate; one who, in a few years’ time, may not even recognise you, yet will require such love and enduring care through that progressive decline. What courage that must take.

That thought is interrupted by the arrival of the social worker. Her immediate response, after being told that Mum is deaf in one ear, is to turn down the sound on the television in the waiting room. She then checks that what she says is clearly audible to the new patient, before explaining what will happen this afternoon, and asking if we have any questions.

My mother, a veteran of the public health system, has two personal prerequisites when it comes to medical professionals – that they care about their patient, and that they listen. Should they fail to demonstrate these two essentials, they will most likely fail to earn my mother’s respect and trust. Yet after only a couple of minutes we realise the social worker meets these criteria. And in this clinic, she is not alone.

There is a specialist geriatrician assessing my mother. She introduces herself, seats Jean in a position in which she will be able to hear well and make visual contact with whoever speaks. In fact, the geriatrician and my mother are so closely seated that Mum moves back slightly, reclaiming a buffer of personal space.

The specialist, who speaks with an accent my mother is not accustomed to, asks in clearly enunciated speech, ‘Do you think you have a memory problem, Mrs Gierck?’

I want to step in and ask her to rephrase the question, to ask about Mum’s confusion of dates and times, but I sense this is not the moment.

‘I think I do very well,’ is my mother’s reply.

The geriatrician and the social worker glance my way.

‘Mum gets confused about dates and times’ is the best concise explanation I can offer. (She also repeats herself, tells me the same story over a week or so, but she’s done that for so many years that it’s normal.) I also add that she has had a mini-memory test with her GP which, he said, without giving us a numerical score, was not too bad, but that the one with the aged care assessment nurse was a struggle.

‘I did well. I got twenty-two out of thirty,’ my mother says emphatically. If there was any doubt about her memory, it’s not in relation to that score. She seems to have committed it to her long-term memory – the score, and her interpretation of it.

Soon we are separated. I am sitting in a consulting room with the social worker; Mum remains with the specialist geriatrician. However, before I can answer any of the questions the social worker has on her list, I find myself blurting out that I’m feeling pressured by the aged cared assessment nurse to get my mother a driving assessment, immediately. My mother doesn’t want that. She has agreed to do one early next year, in January. I can’t push her. The relationship between us has, over the years, had a number of troughs. Currently, if one considers trust, frankness and camaraderie, it is at a high point. My mother is so pleased to have someone accompany her.

The problem is not just about having a driving test – it’s about how stressed Mum gets when a ‘test’ or its modern equivalent, an ‘assessment’, has her name attached to it. That happened with the brain scan and the second mini-memory test, the one where the nurse came to my mother’s home. This is the dilemma: even if my mother can drive (and her local doctor and I think she can drive around the local area, within a 5-kilometre radius of home) she may get so nervous in a formal test that there would be little chance of her passing. To have the test would, I believe, rob her perhaps unnecessarily of her ability to drive and her independence.

My understanding of what I have been informed by the ACAT nurse is that if Mum, who scored twenty-two out of thirty in a mini-memory test, has an accident and the insurance company finds out she has a memory problem, she may not be covered for her car or the damage to any other person or vehicle. I had rung my mother’s doctor and left a message for him to ring me to discuss what to do, but he never returned my call.

The social worker duly informs me that I will not make this decision alone. The team at this memory clinic will make recommendations based on their assessment, in consultation with Jean and me. Hearing this news, a sense of relief consumes me.

By the time my mother, the geriatrician, the social worker and I meet up again, an hour has passed.

‘I think you’re very difficult to assess,’ the medical specialist says. ‘I know you were very nervous and that sometimes it’s difficult for you to hear.’

The geriatrician is also aware that her own accent may have made it more difficult for Mum to respond appropriately. And it turns out she has also done some detective work. She hasn’t just noted my mother’s nervousness, but in her gentle, inquisitive way, has found out why. To my surprise she is able to accurately describe her new patient’s experience of school, and its legacy.

The young primary school student with blonde curly hair reaches for a black lead pencil in her wooden desk. She’s anxious, so anxious she could shake. Her teacher has just announced it’s time for a spelling test. Another test; another opportunity to have her inadequacies made public, her inferiority declared.

She must write down each of the words the teacher says. But for some reason the words the teacher clearly enunciates refuse to appear on the page in front of the young Jean. It’s not that she can’t write. It’s just that she can’t quite get the correct sounds onto the page. Her work will be returned with thick red crosses right down the page. As if that isn’t enough, incessant taunting will begin the moment she steps out of the classroom. ‘Dummy. You’re a dummy.’ And then there are the teachers’ comparisons with her clever older sister.

It is years before Jean is diagnosed with deafness in one ear; years before she realises that she has so much difficulty spelling because she can’t hear the sounds clearly. But by then a fear of tests will be etched into who she is. As an adult, tests will automatically induce excessive anxiety.

The consulting geriatrician hasn’t simply ticked or filled in boxes. She has quite an understanding of the woman she’s meeting for the first time, and is honest enough to admit that she does not have the full picture. She also tells my mother that she thinks she is ‘pretty normal’. However, the geriatrician, who I can see Mum already has implicit trust in, is going to set up some appointments, one with a friend of hers, a neuropsychologist. At the moment, there is no diagnosis of dementia or chronic memory loss, no need for my mother to stop driving locally, and no need for her to stop work.

Mother and daughter leave the memory clinic relieved, my mother because she’s been told she’s ‘pretty normal’ and her daughter because she does not have to make decisions she’s not qualified to make alone about the well-being of her mother. When they get home, the daughter will open the bar, pour a regular brandy for her mother and a double for herself. After all, it is a double celebration.

The chairs, set up each morning in a soldier-like formation, have now been pushed and dragged into a disorderly arrangement at the local doctor’s waiting room. Mum sits in the uncharacteristically quiet room, waiting with increasing displeasure.

It is after 4.30 pm and the doctor’s tardiness only seems to exacerbate my mother’s edginess.

‘I have to go and see June and Harold and I’ll be late,’ she informs me.

My reply that these old family friends won’t worry if she’s twenty minutes late is met with an air of I’m-not-taking-any-notice-of-that-comment.

‘Anyway, I don’t see why the doctor has to see my foot again.’

‘You’re not here for your foot, Mum. You’re here because you tripped and fell in the garden a couple of weeks ago and your backside is so sore you want the doctor to check if you’re okay. That’s what you told me two days ago, so I made the appointment and came with you.’

‘Hmm,’ she murmurs.

I take it as a conceding hmm; an admission there is the possibility that I may be correct, not an admission of any giving up on my mother’s part.

Walking home through the park, the sun no longer casting shadows, I begin to wonder if forgetting why you are seeing your medical practitioner is ‘pretty normal’ or not.

The squares on the calendar

November, 2009 The squares on the calendar in Mum’s kitchen where we write down medical appointments are now filling up. I’m learning to record which hospital, which floor, which department, what the visit is for, the name of the building if applicable (since hospital mazes can be most confusing) and, most importantly, the phone number. Sometimes there’s not enough space in the squares so I only write essential information pertinent to my mother’s needs. I’ve also learnt to confirm appointments a day or two prior. However, there is one activity which is not on my mother’s calendar – finding a special clock.

For some reason, Mum has at least half a dozen clocks around the house, each one set on a different time. To an observer it may appear chaotic, but to my mother the clocks have an order and can be easily understood. The one beside her bed runs twenty minutes ahead of real time, therefore ensuring she is ready well before she needs to be. It is in the kitchen, however, that the real confusion begins.

The gold clock on the wall with a round face and black Roman numerals loses time each day but because it is a unique piece my mother refuses to ditch it. Instead, she stands in her kitchen and looks upon it as a piece of beauty. The clock on the oven has not worked for years. And to its left, the clock on the microwave is rarely reset after power outages and therefore remains unreliable. Meanwhile, the digital time displayed on the clock radio which blares out music each morning from the kitchen bench is often set on pm rather than am. What’s more, the hours and minutes get bumped forward with regularity as my mother reaches for nearby power points. And as for the lounge room, the clock on the mantelpiece may match an ornate lampshade, but it’s never actually ticked.

What I’m in search of is not just a digital clock, but one which also shows the date and the day of the week. The search has taken me far and wide, from the internet to spying in local shops. The local bank has one clock which would be perfect. But they’re unable to provide information as to where one may be procured. And they don’t wish to sell the one they have. My cousin in Newcastle suggested shopping at a major retail chain, but I’ve searched many and still the clock eludes me. So for now Mum will have to rely on me reminding her about each of her medical appointments – the night before, and that morning.

On Wednesday 18 November, we sit in another public hospital waiting room. These days one clinic is blurring into another. As we wait, I wonder how country people, especially those in remote areas, or elderly people without children, manage. (Not having children myself, the latter is a thought I try not to focus on.)

Just getting to reception at the clinic is difficult. The queue is at least a dozen people deep. In that queue there is a woman using a walking frame, a fellow with a walking stick, and several who look as if stability is a daily challenge. All are elderly. Nonetheless, with the exception of the fellow in the wheelchair, they must stand and wait. And the wait, just to get to see the receptionist, can take ten minutes or more. If you don’t see the receptionist, you don’t get ticked as being present, and consequently you don’t get called by a voice you can hardly hear over the collective, boisterous human babble that fills the expansive waiting area, which serves several clinics. Whoever designed this set-up failed to think about people with hearing problems.

It also appears that most patients have learnt to wait with resignation. Mum finds this an excellent time to enjoy a cappuccino and read all the magazines she never buys.

By the time we see the vascular specialist, a routine yearly check-up, and get the all-clear for another twelve months, I’m already planning Mum’s next hospital visit, which is the following week, for another brain scan. I’m calculating what time to get to her place by, where I’ll park at the hospital so that she doesn’t have to walk far, and which clinic it is in. On the way home we stop at the local hospital, in one of the few fifteen-minute parking bays, and I conduct a reconnoitre, eventually finding my way to where the brain scan will take place. That established, I’m now confident of getting Mum there next week.

We have timed the appointments so that I can go away for two weeks in December. We still have no news of the neuropsychological appointment the geriatrician is setting up, but that will not be in December. I’ve also arranged for a friend of my mother’s, Denise, who happens to be trained in aged care and is only a few years older than me, to check on Mum while I’m away. (I’ll be hiking in Tasmania, out of telephone range from time to time.) And Mum can also ring my brother if she needs anything between his regular visits. However, before I leave, my mother and I have one last appointment. And Denise has offered to accompany us.

A personal barometer

December, 2009 We stand at the front door of a residential aged care home, unable to figure out how to get in. Apparently it’s not unusual for such places to have security-coded doors. The woman who eventually greets us is bright and bubbly as she leads us along with two other middle-aged women perusing the place for their own ageing parents. The clean, carpeted long corridors, which often intersect, have an air of freshness and institutionalisation. Today we are told the more agile residents are out on an excursion.

The last time my mother and I visited a place where elders are cared for in a community setting, as far as I can recall, was visiting Mum’s father, the only grandparent I have vague recollections of. (The other three grandparents were deceased by the time I was born.) Pop lived with our family and then with my mother’s sister and her family before spending some time in a Catholic home, a couple of streets from my aunt’s house. Mum used to take me to visit him every Friday. But there is one incident in particular which remains more memorable than the ageing figure who shuffled around in his striped pyjamas.

It was the 1960s. Smoking anywhere was considered normal. Pop and the fellow in the bed next to him enjoyed a cigarette. One night, during his one-last-smoke-for-the-day, Pop nodded off, his drooping cigarette making contact with his blanket. It might have turned into one-last-smoke-forhis-life had one of the staff not wandered downstairs to where he lay sleeping and discovered the smouldering blanket.

That was nearly five decades ago. And now it is my mother who’s considering taking up residence in an old people’s home – or aged cared facility, as they are now known.

We are aware that Mum’s selection criteria are twofold: that it is in the local area so friends can visit, but more importantly, it must be Catholic. The latter narrows our choices considerably. If possible, I would also like to add other criteria: that it is reasonably accessible by public transport, and that it has what all the brochures describe as ‘ageing in place’ – which as far as I can tell means you are not turfed out if you become a high-care case. What’s more, it needs to have a good feel; and most importantly, Mum would need to be happy, eventually, to live there.

Peering in the lounge, I note the number of aged, barely mobile residents seated around the room, eyes glued to the huge TV screen on the wall. One woman is shooing us away. Another wears a look of glazed detachment. On the other side of the corridor is the dining room, which serves three meals a day, and down another hallway is one of the little rooms each resident makes their personal habitat, with just enough space for a single bed, a TV, somewhere to put their clothes, and their own small but functional bathroom. There’s also a prayer room where Mass is said once a month. However, it is the location of the facility, in close proximity to the Catholic church, which appeals most to my mother – a woman whose bedside table is replete with rosary beads, miraculous medals, holy pictures and other sacred Christian accoutrements.

Not that Mum considers herself so much Christian, as Catholic. Having grown up in the days of the great Catholic– Protestant social divide, where regular religious taunting was a part of life, my mother was raised, and has remained, a committed Catholic.

What’s more, she’s been going to church, or Mass as Catholics call it, on a weekly basis since she can remember. Sometimes she goes daily. It’s not just the ritual of the Mass and all the prayers, but being part of a vibrant community that appeals. Had my mother not been able to marry my father, a man who was brought up Church of England (a Protestant, no less), inside a Catholic church, she would not have married him at all. My father, however, was required to make two concessions: to stand with his bride at a side altar, rather than the central one, during their wedding nuptials; and to agree that any children were to be brought up Catholic. A man able to live a most ethical life without needing to go near church buildings or dogma, my father agreed.

If The Guesthouse, as I call this aged care home, were filled with writers and artists, I might book myself in. But it’s not. On first impression, it seems as if it’s brimming with old souls, their memories on the slippery slope of the forgettery, in need of community care. At that realisation, I find myself taking a few deep breaths. And I wonder what Mum is making of it all.

My mother is a woman who, with apparent ease, divides people, places and even TV commercials into those she likes, and those she definitely doesn’t like. Her demarcations, over time, remain as clear as they are sturdy.

Of one particular Liberal politician she declares, ‘I have to turn the TV off when he comes on.’ Tony Abbott certainly rates high on the ‘dislike’ side of my mother’s personal barometer. Yet the sight of Marc Murphy, a strapping young footballer for a team which is not the one our extended family is passionate about, has my mother oohing and aahing. On my mother’s personal barometer he is the epitome of ‘like’. And it’s not just due to his football or physical attributes.

When Marc Murphy was young, Mum used to accompany him across the school crossing. She reminds us of this with such pride, as if ensuring his safety at the school crossing made a significant contribution to his personal success. What’s more, if he were ever called before the tribunal to answer for untoward actions (surely not!), my mother would remain sure he did no wrong – certainly not intentionally.

What I need to know today, however, is if The Guesthouse appeals to Mum. Could she see herself living there? Or is it the kind of place she never wants to see again?

Once we are back at the family home, the jug boiled and the tea poured, Denise and I eagerly listen as my mother announces her decision. The Guesthouse seems to have met a number of personal criteria because not only does it appeal, but she speaks about it with enthusiasm. On her personal barometer it’s a really strong ‘like’ – a Marc Murphy!

I think that’s a relief, but I’m not sure. I’m still trying to come to terms with the scene I’ve just witnessed – that lounge room full of ageing Australians in the late autumn of their life cycles.

I don’t like to tell Mum there’s no guarantee she’ll be able to secure a place at The Guesthouse. I also don’t dare ask when she’s thinking about moving. I figure it’s not urgent. There will be time for those discussions later.

CHAPTER THREE

Unexpected movement

Early January, 2010 A glimpse of unexpected movement is captured in my peripheral vision. It all happens so quickly – my head turning, the body tumbling, and the sense of helplessness; of not being able to stop the inevitable.

Mum has fallen. She is on the white tiled floor trying to lift her thinning body, but unable to do so. My first instinct is to try to get her back to an upright position, as if that will take us back to the moment we were enjoying before the fall. Denise, who is with us at the Plaza, is telling me not to try to move Mum. She is checking her condition, whether she has broken anything, ascertaining what mobility she still has.

The shop we are outside has a crate on wheels out front. Mum’s foot had accidently slid under it as she walked, and as she tried to steady herself by holding the back of the crate, having no brake, it rolled away – my mother sprawling with it.

The lightness my mother had over Christmas and in recent weeks has now disappeared. The woman we eventually get up and onto a sofa in the Plaza is so badly shaken she is in no condition to drive. Accordingly, we accompany her home. Attempts to take her to the doctor for a check-up fail. Mum’s regular doctor is on leave and she refuses to see any other. For the next few days she is slow in movement and barely leaves the house.

These days are difficult for my mother. When she’s forced to lie low she feels her husband’s absence – acutely. My father, Keith, the man six years her junior she first met at the Trocadero dance hall in his flared Johnny-the-Tailor suit, and fell in love with; the man she shared her life, her dreams and her illnesses with. Through each of my mother’s major operations – and there were over twenty of them – and her subsequent heart turns, my father cared for his wife, lovingly. Now, however, since his sudden death in 1995, Mum must face her recoveries without her lifelong mate.

My mother’s fall has not just had an effect on her. It also shocks me, catapulting me into making an application for Mum to get into The Guesthouse aged care residence, which we visited only weeks ago. Mum agrees. Another consequence of the fall is my heightened sense that my mother’s life could change instantly and dramatically. While this is a human condition we are all subject to, she now seems more vulnerable.

A corollary of completing The Guesthouse application form is that I am now required to negotiate fees with the aged care facility and to organise a Centrelink asset assessment. Having only a general idea of the parameters of my mother’s fiscal boundaries, I must now immerse myself in the fine details.

A note

My mother has always kept her financial affairs in a systematic fashion; however, it still takes some deciphering to establish her current financial situation. Some bills to be paid sit in a wire basket on the kitchen table, as do recently paid accounts. Others are stacked in piles on a kitchen chair. In a chest of drawers there are folders full of documents, some stapled, others with elastic bands keeping them clumped together. And some are in plastic covers, many with handwritten notes on them. Some of them date back years. Mum assists throughout my hours of fossicking through piles of paperwork.

Perhaps it was due to familiarity rather than veneration that I developed a similar system. Recently arrived bills are temporarily stacked in my kitchen drawer as soon as they are received. Then, once a week or thereabouts, when they are paid, notes are written on each, including date of payment or receipt number. Finally they are hole-punched, then filed in a series of folders.

In the late afternoon of Saturday 9 January, after spending six hours as a document detective at my mother’s house, the thought of returning home is enticing. However, as I’m about to leave, Mum hands me a small note on which the following is written: ‘Memory Clinic, Monday 11 January, 1.30pm’.

Furthermore, she is unable to tell me where this information comes from – a phone call or a letter – and why this handwritten note in my mother’s script says Monday, 11 January, when I have a copy of a letter from the memory clinic, written in December, stating that Jean Gierck’s appointment for the neuropsychological test is on Thursday, 14 January at 1.30 pm. What’s more, I rang the clinic about the appointment in December, asking for it to be changed, and they refused.

‘This can’t be right,’ I say as my calm demeanour gives way. When my mother offers to ring the clinic, I point out that it’s Saturday and no-one will be there; that I start teaching at 9 am Monday morning – I’m on summer school duty – and that there’s no way I can get her there. This is extremely problematic as the letter I received about the appointment for 14 January stipulates that a main carer needs to attend.

Two days later, on Monday morning at 8.31 am, I am on the phone to the memory clinic. Yes, Mum’s appointment is for today at 1.30 pm. Yes, they rang my mother on Thursday to change the date. I can hardly believe what I am hearing. Staff have rung and left a message with a woman who is a patient at the memory clinic, without consulting or copying in the person who is her main medical carer. And they expect her to remember.

If I had the time I would be furious, but with a four-hour class starting in twenty minutes and logistics to be organised to get my mother to her appointment, as well as getting myself there by 1.30 pm, fury is a luxury I cannot afford.

Fortunately I have Denise on standby. Denise first met my mother on the school crossing while waiting for her two young boys. She found Mum very friendly and often chatted to her. Over the years the friendship grew. Denise has become one of my mother’s trusted friends, and a person I can count on too.

Today, Denise will collect Mum and wait with her at the clinic until I arrive. I will also race out the door the moment I finish my adult English as a Second Language class at 1 pm, and if the 43 degree Celsius weather has not deterred taxi drivers from working, catch a cab to the clinic.

All goes to plan. Soon I am standing with Mum and Denise, gulping down a takeaway egg and lettuce sandwich, when a clinician arrives with the news that I can take my time to eat because they need to test Jean first, and that takes two hours. Two hours! I want to scream.

‘Excuse me. I’ve just raced from work in a taxi because I was told that I had to be here for the 1.30 pm neuropsychological appointment. I was not informed I could have come two hours later.’

The clinician’s suggestion that perhaps I should return to work is met with the unimpressed retort that having spent $30 on taxi fares just to get here, I’m not about to spend another $60 just to do an hour’s work.

Two hours later, when I speak to the neuropsychologist, she tells me that she has not yet rated any of Mum’s tests, and that the test results will be made available at the next appointment. She also informs me she will be part of the team at the memory clinic that will consult with my mother and me when all the test results, and hopefully a diagnosis, are in.

Logistics

Late January, 2010 Driving through the morning peak-hour traffic, there is no time to gaze at the trees, the birdlife or the simmering clouds in the sky. I focus instead on the three lanes of traffic, in particular the middle lane, which drivers cross ferociously, darting across as if gaining access to the right-hand lane has life or death consequences, when in reality all it offers is the most direct route to the city.

When I arrive at Mum’s she is waiting. Wearing dark slacks and a pale pink jumper with a matching scarf, she seems oblivious to the small stains at the top of her pants and around the sleeves of her jumper. She has applied her make-up in the usual fashion, so the blue eye shadow is well rubbed into the cracks and crevices that her deeply lined wrinkles have become.

‘Did you remember not to eat this morning?’ I ask.

‘I haven’t had anything since midnight last night,’ my mother replies, letting me know that she is still capable of following instructions.

The traffic en route to the hospital is not as congested as we had expected, and we manage to park in a short-stay car park near the entrance. We walk across the bitumen to the entrance and through to the lifts on the way to the 9.15 am appointment.

When I inquire, the receptionist informs me that Jean will be two to three hours, and that she will ring me when the patient is ready to be collected. The department we are in search of is, by my reckoning, well hidden. Although I manage to get us there, it takes me several attempts, after stepping out of lifts on the wrong floor, to find my way back to the entrance.

During the couple of hours Mum is having scans, my focus will be on logistics. My mother has always been meticulous with her payment of accounts and bills. But I have discovered a flaw in her system. The latest Visa bill – Mum could not find a copy of it – was not paid by the due date, so she racked up a late fee of $25. Decades of prompt payment could not override the computer-generated bank fee.

The woman at the bank is friendly, asks lots of questions, photocopies legal documents and fills out all the forms so I can check Mum’s statements and prompt her to pay them. In the longer term, it may mean this responsibility is taken over. But we are trying to live in the present – to deal with today. After some discussion, the bank clerk also agrees to waive the $25 bank fee.

While I’m still at the bank, my phone rings, and it is the hospital. It’s only 10.30 am, yet I’m advised that Jean is ready to be collected. I’m then asked if she should wait in the waiting area where I dropped her off, or go to the front entrance of the hospital.

‘Tell Mum to stay in the waiting room,’ I respond in the imperative, with some urgency.

I could be there all day trying to find her if she began wandering through the hospital maze, where even I was struggling to find my way around.

As I approach my mother’s car from the passenger side in the bank car park, I notice the car’s registration sticker. It has been put on incorrectly and doesn’t have any of the vital information – make, model and expiry date – that indicates the car’s current registration. It occurs to me that if Mum has forgotten to pay her Visa bill, she may well have overlooked paying the car registration too. I drive to the hospital, not far from the police station, hoping I’m not in possession of an unregistered vehicle.

When I collect Mum, she appears a little woozy. She tells me it’s because of the dye that was injected for the scan. But it could also be because of how anxious she gets about tests. In any case, she shuffles along to the car, holding my arm tightly. I wonder if she’ll be able to work tomorrow, but that thought I keep to myself.

Tomorrow is the start of the new school year. Mum looks forward to seeing the students again and meeting all the first-day-at-school children. ‘They’re so little,’ she croons. At this stage, any suggestion of not being well enough to return to work would only upset my mother. Besides, we can see if she feels better this afternoon.

When we return home, I check the glove box of the car for any evidence of the car’s registration. Unfortunately, there is none. I plan to ring about it but before we are inside the house I find a bright yellow note poked under the front door. It’s from the council’s Ageing and Disability Services and it says that someone came at 12.30 pm and no-one was home. We must have missed ‘someone’ by less than thirty minutes.

‘Mum, do you know what this is about?’ I ask, concerned that another appointment has not made it to our planning calendar. The phone call about the car registration is therefore preceded by a phone call to Ageing and Disability Services at the council.

As I wait on the phone line, a favourite saying crosses my mind: ‘When you’re up to your arse in crocodiles, it’s hard to remember you came to drain the swamp.’ That thought disappears when, after I’ve waited several minutes, my call is disconnected. Not to be deterred, I ring back. Apparently the person who wrote the note was the council cleaner who cleans Mum’s house every two weeks. (That’s another commitment to add to the appointment calendar.) The woman I’m speaking to also asks if I’m aware that Jean has a podiatry appointment on 9 February at 1.30 pm. (‘It’s 7 February,’ Mum is saying in the background, a date she has committed to memory, an incorrect one which has not made it to our appointment calendar either.)

Not one to miss an opportunity, I ask about getting a rail in the bathroom as Mum recently slipped in the shower. I am immediately informed there are two things that are required. First I must speak to a council officer who can do an in-home assessment. She in turn informs me that the services of an occupational therapist are required and gives me the number to ring. I try several times, but the line is busy so I decide to take the number home and deal with it later.

When I’m off the phone, Mum and I lament. When Dad was alive, we never had to ask anyone for home maintenance assistance. My father trained as a mechanic, and was like a magician with any type of motor – car, washing machine, even swimming pool filters. He also developed a wide range of fix-it and home renovations skills. Those days, however, are well past. Mum must now rely on others.

Returning to the planned phone call about car registration, I am informed that Mum’s old green Laser is still registered. For a small fee a duplicate notice to attach to the car windscreen will be sent out. And if Jean is questioned by the police in the meantime there is no problem. She just needs to explain that the registration sticker was incorrectly affixed to the windscreen.

Tasks taken care of, I can now sign off on logistics for the day. However, just before leaving, I inquire how Mum feels.

‘I’m much better now. I’m not woozy … It’s first day back at school tomorrow. I don’t want to miss that,’ she says with feeling.

And she certainly looks better, colour having returned to her face.

Soon after, I depart, walking across the ovals I used to play on as a child, then catch the bus to the swimming pool. Once inside, in less than a lap I’ve found my rhythm; arms, breath, body and water are one; the sensation of gliding through the water soothes. The sinking feeling that sometimes assails me – a feeling that whatever I do in relation to my mother, I am behind – dissipates. By the time I leave the pool I am refreshed.

Where are we meeting?

Mum has been back at work for a few days. I ring when I know she’ll be at home. It’s a reminder call. She has a 10 am appointment tomorrow morning. I tell her that I’ll come to her house at 9.30 am. Calls such as this are brief, not because I’m at work, but because I hope that focusing on one piece of information may assist her in remembering that particular detail.

At 8.50 pm that evening Mum rings me at home.

‘Michele, where am I meeting you tomorrow?’

‘Mum, remember the doctor at the memory clinic said it was better for you to only drive close to home, so I’ll come to your place at 9.30 am and we’ll go together in your car.’

‘Okay. I just wanted to check.’

The following morning, at 9.15, I walk along the main road to Mum’s. It’s hard to imagine as I walk along this wellmade four-laned road with traffic roaring past, a row of shops on my right, what it must have been like when my parents first moved here – the treeless hills with barely a house on them, and the old dirt tracks which served as roads.

My mother and father moved to a new, bare suburb. With the assistance of those who lived nearby, they laid the stones on the road so their homes could be accessed year round. My mother continued to play her part in local committees to build the school, the church and the tennis club. She is a contributor, and always has been. Over several decades she watched land that friends thought was only good for raising cattle become home to a vibrant community.

As if bringing me back to the present moment, my mobile phone rings.

‘Michele, where are we meeting this morning?’ asks Mum in a croaky voice.

She knows we have an appointment, and she also knows that I will accompany her there. But for some reason the time and the details of the arrangements seem to have vanished from her memory.

My mother’s memory is quite inconsistent. She remembers established routines, like the times and duties of her school crossing supervisor job, well. And I’ve noticed, surprisingly, that when her local doctor’s appointments are either before or after her crossing job she seems able to remember them without writing them down. However, her recall of new information about most other appointments, including dates and days of the week – although we have now bought her a clock that displays the day of the week, and it sits regally on the mantelpiece, so Mum often looks at it – is not so reliable.

CHAPTER FOUR

Knockout heat

February, 2010 The intense heat and sapping humidity which has enveloped Melbourne for the last few days is relentless. The azalea in my front garden now has burnt leaves and the entire plant is drooping. And it’s not the only species suffering from summer sag.

This February’s above-average temperatures are not good for school crossing supervisors, whose mandated attire includes a long-sleeved white coat. They must stand on the hot cement pavement waiting, and when the schoolchildren arrive, walk them across the furnace-like bitumen road. And the poor little ones, with only a couple of weeks of schooling under their belts, leave school almost as wilted as the exotic flora in nearby gardens.

My mother has always revelled in summer – the heat, and the long days of sparkling sunshine that seem to shimmer. She finds it invigorating. However, even though she assures me she is fine, I have my concerns about her standing at the crossing in this knockout heat.

Come Saturday morning, Mum is so listless she barely moves. When I arrive, she is lying in a reclining arm chair, eyeshades over her eyes. Although she worked yesterday, she has not eaten and it is extremely difficult to get her to drink. I figure the best thing is just to sit with her and encourage her to sip fluids until she dozes.

That’s my cue to begin scouring my mother’s records, checking that her house and car insurance policies are up to date. By late afternoon when my cousin (my mother’s sister’s daughter) arrives, I welcome her at the front door with the news that Mum is not well and I have just discovered that the insurance for Mum’s car ran out five days ago. Since it’s purchased through a broker I have to wait until Monday to pay it. What’s more, my mother has not put a stop on her Visa card, which she lost on Thursday.

As my mother’s listlessness refuses to budge, we pump her with oral rehydration drinks, then sit around and tell her funny stories. I’m not sure if it’s the company or the medicine, but her spirits seem to lift.

On Sunday morning my mother lies languidly in bed and is unable to get up. The oral rehydration treatment failed to sustain any recuperation, and although she dutifully swigs another dose, I’m wondering what to do. When moving to the bathroom she is now unsteady, and the threat of a fall is very real. That in mind, I decide to stay the night.

As I tuck Mum in for the night, I discover that the globe in her bedside lamp is missing. This means that when she’s been getting up in the middle of the night, as she often does to go to the bathroom, she is skirting the bed and negotiating the doorways in the dark. I tell her that I will keep the hall light on, just to be safe.

Around 9 pm, when I’m in the bathroom, which happens to be next to her bedroom, Mum is talking out aloud. ‘My beautiful little daughter. Yes, you were Michele.’ And then, as if making a mental shift from childhood to my teenage years, she adds, ‘But what stick you used to give me.’

I can’t help laughing.

‘Mum,’ I retort, ‘it’s the job of every child to give their parents a bit of stick.’

It is true that, unlike with my father, there was frequent tension between my mum and me. Not when I was small, but once I began forming my own independent thoughts and ideas, particularly when they related to things I really wanted to do.

One memory instantly comes to mind. It’s a cool Saturday morning, and I’m supposed to be at Brownies by 1 pm. However, I inform my mother that I’m not going. And I have good reason. My football hero, Peter Hudson, Hawthorn’s full-forward, is expected to kick his hundredth goal for the season this afternoon. One hundred goals! I’m a passionate Hawthorn supporter, and although I’m only ten years of age, the thought of hearing this moment live on my little black and silver transistor radio is so exciting that waves of anticipation engulf me.

My mother, however, has other ideas. ‘You’re going to Brownies,’ she says matter-of-factly.

And I can barely believe what I’m hearing. How can a mother who gives her children a football season ticket for Easter make me go to Brownies? Brownies, for goodness sake. It’s not like Cubs. At Cubs the boys get to go away on camps, and they learn how to tie knots. But what do we do at Brownies? Hold hands and dance around a painted wooden mushroom, singing ‘We’re Tintookies, what we do, is try to make your wish come true.’ It’s not fair. It’s just not fair. My wish is to listen to Peter Hudson kick his hundredth goal. If I wasn’t so hungry I might hurl my poached eggs on toast in Mum’s direction. But I don’t. I grudgingly accept my fate, finish my meal, then shine my badge and shoes for Brownies. As in so many battles with my mother, I am on the losing end. But the older I get, the greater my resistance.

Each of Mum’s stirrings – just after midnight, at 2 am and 5 am – prompt me to jump out of bed and accompany her to the bathroom or the kitchen. At 5 am, when she tells me she’s hungry, I make her some toast and sit with her for half an hour as she eats, morsel by morsel.

When I leave for work she is still in bed, and her assurance that she will be fine is far from convincing. In between classes at work, I update Mum’s car insurance and ring the medical clinic. The earliest appointment available is at 3.45 pm. I will leave work as soon as I finish teaching at 12.30 pm. Fortunately, a cousin and a neighbour keep my mother company while I’m at work.

When I return, my cousin advises that Aunty Jean has only eaten one piece of toast; that there has been no noticeable improvement.

I’ve booked Mum’s GP of choice, so I’m surprised when she says that she does not want to go. It takes some encouragement to get her to agree. My mother is so slowmoving that it takes a long time to dress her. I grab the nearest clothes, a pair of pink pants and a white T-shirt, and it is only once we are in the car that I discover both are stained.

At the doctor’s clinic we are thankful that our wait is only a few minutes. Mum takes my arm as she shuffles along the corridor to the doctor’s consulting room. Her doctor watches, noting her pallour, her languid look and her slow and unstable movement. Soon after she sits down, the doctor advises my mother that she will need to go to hospital. And after examining her further, he declares she also requires an ambulance. I’m relieved at this news, but my mother is shocked. She seems to have no sense of how depleted and physically unstable she is.

Paramedics

Lying on an examination table in one of the doctor’s consulting rooms, my mother has a blue blanket thrown over her. She is not in any condition to fight her doctor’s medical advice.

Forty minutes later, two men with an air of authority stride into the room in blue uniforms on the back of which is embroidered in red lettering ‘Paramedic’. They may be young, compassionate, and not without an appetite for humour, but you get an immediate impression these are the people you want in an emergency. The taller of the two asks my mother some questions.

‘What day is it?’

‘I think it’s Monday,’ she responds.

And what month is it?

‘February.’

‘And what year is it?’

‘1910.’

‘1910, are you sure?’

‘2010,’ she says, as a kind of self-edit.

The paramedic then asks me if Jean usually looks so pale, and if being this listless is out of character.

‘My Mum’s not like this at all. She’s lost her bite,’ I begin, and then correct myself. ‘She is usually quite dynamic.’

‘Dynamic. That’s a good word.’

Soon the paramedics put their patient on a trolley and wheel her along a corridor to the ambulance. If she wasn’t on an ambulance trolley you could have been forgiven for thinking it was royalty leaving the doctors’ rooms, all the staff waving her goodbye and wishing her well.

My mother is taken to the local hospital. We are fortunate because this is the hospital that has my mother’s medical history, and it was on ambulance bypass this morning. (Bypass happens when the Emergency Department is too full, and cannot take new emergencies.) When I arrive at the Emergency Department, I’m directed to my mother’s cubicle. She’s hooked up to machines and although I’m not sure what all the lines and beeps on the monitor mean, it is clear that some of her vital signs are not stable, including her oxygen level.

The doctor who is in charge of my mother wears a pink shirt that doesn’t show creases. He has a concerned yet calm demeanor – attributes one might expect of the Director of the Emergency Department. A series of tests are ordered. The nurse, not a regular in the Emergency Department, is in a tizz, letting us know she’s just had five patients leave and now has five new ones to respond to. The drip in my mother’s arm does not seem to function correctly and the nurse seems incapable of fixing it or admitting to the medical director that she needs help. So my mother must put up with her frequent attempts to jab the shunt back into her vein.

When the taller paramedic comes to say goodbye to my mother and to wish her well, Mum asks the young man with thick brown hair and a striking warm smile to show her his left hand. When he obliges she responds, ‘Oh, there’s no ring on your finger. You’re not married. Gee, all the girls will be after you.’

It seems whatever they have given my mother at the hospital is working already. She’s not well but she still recognises a handsome young man when she sees one.

Before I leave the hospital, the medical director explains that Mum has an infection and her oxygen and sodium levels have dropped. She’ll be required to stay in hospital until she can be stabilised.

Next morning at 7 am, on my way to work, I call in to see my mother. I know it’s not official visiting hours, but it’s a brief visit, just to say hello and that I’ll be back later in the evening. Although my brother works full time, he manages to visit during the day so my mother has some company.

Naivety

The events of the last few days have provoked an exhaustion in my body which requires immediate attention, so I sleep in. Once woken, I begin a 30-minute meditation. I haven’t meditated for years, but the idea of breathing well, particularly when life gets tricky, is one that makes sense to me. Although the ideal is to cultivate a calm mind, I suspect that if my thoughts were fireworks, the velocity, density and ferocity of them this morning could light up the Melbourne skyline at night.

With the hospital indicating that Jean is scheduled for release very soon, the rest of the morning is consumed by phone calls attempting to secure my mother a place in respite – a place where she can recuperate with 24-hour care. While the ACAT assessment gave Mum the right to governmentsubsided respite, I soon discover that reality overrides rights. After contacting half a dozen aged care facilities, I’m still in search of a respite bed for one week.

My idea, naïve as it now seems, was to contact The Guesthouse, the aged care residence we visited in December, and book Mum in for a one-week stay – a taster. But it’s mid-February and they cannot offer me a respite place until June. After contacting another eight facilities offering respite, all randomly selected from the guide to aged care facilities (I am unaware of any central booking system or register), I still do not have a place. Fortunately, a woman I speak to at one establishment lets me know that there may be a possibility at one of their other properties, and gives me the phone number.

By chance, the manager answers the phone. Yes, there is a space. Yes, my mother could come in the next couple of days. But, she warns, there is loads of paperwork, some of which has to be filled out by a doctor, and because of all the paperwork they prefer respite residents to stay two weeks. Some negotiations follow, after which a one-week stay is agreed upon.

I drive over in my mother’s car and soon discover a manager with a sense of humour and a can-do attitude, and a place that I think will be fine for a week-long stay. To be sure, I race to the hospital to discuss the idea with Mum.

‘Will they cook me meals?’ she asks in a croaky, low-energy voice.

‘Yes, and it’s for a week, until you get stronger,’ I reply, then add, ‘You’ll be able to sit outside and enjoy the sunshine there. They have such lovely gardens.’

My mother is happy with that.

‘Lovely gardens,’ she says, quietly impressed.

I also realise that it is Mum’s wedding anniversary. I don’t know if she remembers, and I don’t say anything in case it provokes a surge of melancholy.

There’s a photo of my parents that I love. The young couple is tobogganing together, or at least attempting to. My father, a strapping man with a barrel of a chest – who could almost hug the life out of us – is wearing a dark polo-neck jumper and cream long pants. Dressed for style rather than the slippery, icy conditions, my mother is wearing a skirt and short stylish boots. She’s leaning back into my father, who is 30 centimetres taller. In fact, she’s leaning back so hard, she’s actually kicking one leg in the air. Both are laughing. My father is holding the reins and cradling my mother at the same time. The joy of being in each other’s company is evident. It is joy which decades later they will still feel.

For the rest of the day I’m left to struggle with the pile of paperwork. Due to work commitments tomorrow, I have only today in which to complete it all.

I call the social worker at the hospital to tell her I’ve found a respite place and I’m filling out all the paperwork. She informs me that she’ll liaise with the doctors – they want my mother released tomorrow. Since my brother and I have to work, this is not a practical option.

There’s another problem too. It is with the medication form. It must be signed by a doctor. A staff member at the hospital advises me that their doctors do not have time to complete such forms. Mum’s GP can do most of it, but he may not be aware of any additional medications that the hospital doctors have just added. Even getting to see my mother’s GP is not without its difficulties. When I’m informed there are no appointments until tomorrow, I remind the receptionist that Mum has been a patient at the clinic for more than two decades. What’s more, my request will only take five minutes of the doctor’s time. The receptionist concedes and my mother’s doctor completes the form. However, I still need to get a doctor at the hospital to review it.

When I ring the respite place, now dubbed Lovely Gardens, and ask how to deal with this problem, the manager, who has years of experience in the industry, sets me straight, explaining that I’m new to the aged care mire, and that the only way to get anywhere is to act tough. When I let her know the advice has been noted, there is laughter on both ends of the phone line.

In the late afternoon, I approach the hospital. Once inside, a lift deposits me at the required floor. Finding it hard to distinguish the doctors from the nurses and social workers at the ward workstation, I ask to speak to one of the doctors and then prepare to wait.

One young doctor is most obliging. He scrutinises the form, adding the names of an antibiotic and some ointment. Within ten minutes the paperwork is completed. I am also advised by the hospital social worker that the hospital doctors have conceded a day. My mother can now stay until Friday, two days away, so I can collect her that morning and take her to respite.

That evening I’m filled with a sense of elation that somehow I have worked the system in our favour; that Mum will have the 24-hour care she needs. Elation, however, is usually short-lived.

Respite

The woman holding onto my arm as we shuffle from the hospital lift to the car park is a fraction of her former self. The walk of less than 500 metres has exhausted her.

As we arrive at respite, Mum comments on how lovely the roses are. That’s no surprise. My mother loves her garden. It’s a place where she finds so much solace. The southern side of her backyard is lined with roses: some soft pink, others rich red or bright yellow, and even a sole white one.

As we walk mindfully to the cream-coloured barred gate, a well-dressed elderly woman leaning over her red stroller is waiting on the other side. And she refuses to move.

The sign beside the gate advises that it’s unsafe for some residents to leave the facility. So please don’t let anyone out when you come in, and make sure the gate is shut. (Those residents who can leave, and are allowed to, can use a code to get out.)

After a quiet stand-off, I ask the woman – who seems to think only she is aware of her escape plan – as politely as possible to please take a few steps back so we can enter the sunny courtyard. She does so grudgingly. ‘It’s like a jail in here, I can’t get out,’ she mutters. Fortunately my mother does not hear – partial deafness has its advantages at times. I realise that this may be the first of many visits to an aged care facility and I’m hoping Mum’s first experience goes well.

Once inside, my mother glances at the main lounge and dining room, and then says she must lie down. A staff member offers to bring a cup of tea to her room so she can rest. And they even wake her for lunch at noon.

Later that afternoon, the manager rings me about my mother’s departure date. She also adds that the new respite resident is sitting up and telling them she might stay two weeks. How relieved I am to receive that news.

By the time I return, Mum is in the lounge room. Having just sipped the last of her pre-dinner drink, she informs me that she’s okay now and it’s fine for her to go home for the weekend. ‘They told me,’ she says.

‘Who told you?’ I retort anxiously and far too quickly, wondering if anyone has told her that, or if she dislikes the place already.

I speak to the nurse and the manager, staff who are attentive to what’s going on. They know nothing about it. They also advise that respite clients must stay in overnight. That settled, I tell Mum, in a cajoling way, that there is no food at home and no-one to look after her this weekend. She looks at me with implicit trust, and then agrees to stay.

The elation that I felt only two days ago has given way to a feeling of despair. Perhaps I didn’t judge it well. Will Mum be all right at Lovely Gardens? Does she really not like the place?

Back at home this evening, my partner, who had seen me at lunch time in fine spirits, wonders at the dramatic change in mood. He tries to calm me, to offer support, but I feel no consolation.

By 9.30 the next morning, Mum is up, dressed and delighted with the invitation to come to my place for a cup of tea. My partner is looking forward to seeing her.

My mother is unstable and lacking in confidence. She holds my arm tightly as she takes each slow, small step through the glass sliding doors, along the sun-filled courtyard, through the security gate and out to the car. At home, sitting at the kitchen table, she enjoys my partner’s company. But it is obvious that the strength she had up until just over a week ago has temporarily deserted her.

It’s nearly thirty years since my mother had open heart surgery. Before that operation, she barely had the energy to walk to the letter box. Afterwards, she realised she had been given another chance at life, and she embraced it. She was so determined. Over the years the family has watched Mum make many tremendous recoveries, so I can see no reason why this time should be any different.

It is while drinking her weak, black cup of tea that she asks me how she ended up where she is. From my mother’s questioning it appears that she has only vague memories of her four-night stay in hospital, and is unable to piece together the cause.

Later, I ring one of my mother’s nieces, who she is close to, so they can have a chat.

‘I’m in the right place,’ Mum says, speaking about respite. ‘They’re lovely to me.’

Discovering that my mother actually likes respite and that she is appreciative of having her meals and medication organised, as well as the caring staff, including a nurse who rubs her back or puts an arm around her, is like having a massive weight lifted from my shoulders.

The dread of the previous evening now subsides. And it is only after dropping Mum back at respite that I realise the reason she thought she was coming home the previous day may have been that one of the nurses in the hospital said something like, ‘You’re going home today, Jean’ – not realising the patient had been booked into respite.

CHAPTER FIVE

A magician

Late February, 2010 There’s a gauntness, a loss of the certainty my mother had about her life and her place in the world, a loss of personal confidence, which has become apparent. Mum has improved since she first entered respite, but a full recovery will take time. Nonetheless, she feels well enough to visit the memory clinic.

Today is diagnosis day, and when it is announced the diagnosis is not surprising. My mother has early stage Alzheimer’s disease. The geriatrician also points out that if it’s only beginning at eighty-eight years of age, chances are something else is far more likely to carry Jean out of her earthly existence.

What surprises me, however, is that in the neuropsychological assessment done in January at the memory clinic, my mother scored 27 out of 30. Since she scored above 25, she cannot be put on the medication which can hopefully slow down the advance of Alzheimer’s. It is also decided not to retest her today, as she will need a few months to recover from her recent bout of ill health.

The problem with the latter decision is that the woman who will, in two days’ time, begin living on her own again has clearly dropped well below the level that she was at in January. Yet official records will not indicate that, so extra home services will be difficult to procure.

An hour after arriving at the memory clinic, I suspect I have been privy to the work of a magician. Not only has the geriatrician given the diagnosis without alarming my mother, she has also managed to get my mother to agree to retire from her crossing supervisor job – effectively immediately – and not to drive again until she has a driving assessment. All of these life-changing decisions were arrived at in such a way that my mother felt they had been her own decisions.

‘What does the family think?’ the geriatrician asks.

I could mention that several of my cousins have been most concerned that my mother is still working; that my brother has talked to Mum about moving into an aged care home, which would require retirement from her paid employment; or that personally I am delighted the specialist has been able to achieve what no-one in the family could. However, recognising this is not the moment, I reply rather tactfully, ‘It’s fine for Mum to give up work, but she’s a very social person, and we’re going to have to find activities and networks she can be involved in.’

Returning home

As I will collect my mother two days later just after lunch, she will arrive home from respite on a full stomach. I’m also hoping we can keep her nutritional intake up to the standard that the respite centre achieved. But I certainly have my doubts. Getting Mum to eat substantially and regularly was a challenge before her recent illness, so there is little reason to suppose it will have improved.

Staying with my mother overnight is part of a strategy to help her build up her confidence in being back home alone. It’s probably not as much support as she needs, but my offer to ask a cousin from Queensland, one Mum is very fond of, to come and stay for a while receives a flat refusal.

Lounging in the camel-coloured reclining chair, Mum feels at home. That recliner once belonged to Dad. When my father died, Mum moved it to a position where she could warm herself by the gas heater, and for the fifteen years since his death she has found comfort relaxing in it. Today, as she reclines, she is reflective. My mother has only positive things to say about respite: the food was delicious, she made a few friends there, the exercise classes were fun, and she liked the staff. However, what concerns her more now is figuring out what she is capable of, and how to cope with the new physical limits that her body is imposing on her.

I tell my mother that her only job now is to rest and recuperate. To one who has survived many major operations and pushed her way through trauma and ill-health, the concept of a future full of rest and recuperation is not inspiring. However, even she admits, ‘I’m not as strong as I used to be.’

Less than a week after returning from respite, it becomes apparent that Mum is having difficulty with the self-administering of her medication. Denise, who visits regularly, has noticed. And so have I. Sometimes the medicine has not been taken; other times, some of the smaller tablets – like the most important little blue heart tablet – are left in the medication pack, or the medicine is taken on the wrong day or at an incorrect timeslot. I’m not sure what to do, but I suspect if I call the aged care assessment team they might have some suggestions. I’m certainly not in a position to be checking Mum’s medication every day. It’s getting harder to provide the increasing care my mother needs at home, and as such she is vulnerable.

An important phone call

March, 2010 It’s just over five months since I started accompanying my mother to appointments and the consistency of them makes it like a part-time job. Normally I work from home two days a week, writing. These two days are fast being consumed by the tentacles of the aged care beast.

This morning we are waiting for Mum’s accountant, who, not unlike the bus service I used to get to my mother’s house, demonstrates a proficiency for tardiness. Twenty minutes after the scheduled 10 am appointment, when his office advises that he is unable to make the appointment, my annoyance escalates.

There is, however, one important phone call mother and daughter must make, and it will be a team effort. When I explain to Mum’s coordinator that her long-standing school crossing supervisor will be unable to return to work, she is most understanding. My mother had been worried that her coordinator might try to talk her into coming back to work. However, having overheard my part of the conversation, and convinced that she will be allowed to retire, my mother then speaks for herself. Mum says how much she’s enjoyed the work, the children and the parents; how much she’ll miss it; and that she’s still planning to come to the morning tea they are having on 17 March to celebrate her thirty years of service. Somehow it seems fitting that my mother, born a Kelly woman, will have her own personal celebration on St Patrick’s Day.

Maintaining independence

Mum has only been home from respite for one week, but it is apparent there are certain organisations which need to be contacted; certain services which need to be procured; and certain provisions to be ordered. All of this is essential to ensure my mother’s independence.

For four hours this morning I swing into gear as a part-time, untrained, yet determined social worker. That, at least, is what it feels like.

Today there are a number of phone calls to be made, and the first is to Meals on Wheels. The menu has been emailed through, and we are required to select meals for the next week. Mum is not particularly interested in food or menus, but after ruling out the food she definitely does not wish to eat – pasta, pork, beef – we eventually arrive at a palatable selection.

Next in the phone call queue are a council administrator to work out my mother’s termination documentation; Centrelink, the government agency in charge of pensions, to advise the change in Mum’s income; and her accountant, who not only apologises but also provides a salient excuse for missing our recent appointment.

I also have an inquiry regarding an Alzheimer’s Australia course about living with the disease which Mum and I would like to do. I just hope I can fit it in around my work schedule, as classes like this are usually scheduled during the day.

Not so long ago I could cover the full distance of a day without any reference to a to-do list. Now, however, I plan, write, work through, tick off and add to one constantly. Next on the list is the local pharmacist. The pack he’s putting my mother’s tablets in is too difficult for her to use. Could he please transfer them to a Webster-pak (a seven-day pack that separates all of Mum’s medication into days of the week and time of day when they are to be taken), which is much easier to handle? ‘No problem,’ replies the pharmacist, whose business has had my mother’s patronage since it began decades ago.

Then it is time to do some research. My cousin, who lives just two suburbs away from Mum, has told me there are care packages available – my uncle has one – so I make a phone inquiry. When my call is returned, the nurse explains the care package menu, and also advises me to contact the Royal District Nursing Service about Mum’s medication.

The woman I speak to at the Royal District Nursing Service is most attentive. A nurse will come next Wednesday to do an assessment and a family member should, if possible, be present. What form might the service take? Morning visits for a week or two to help Mum get into the routine of taking the medicine and also to see if there are any other services they can assist with. Just knowing that Mum’s medication will be checked and administered correctly, and that she will have meals delivered next week, I feel like a burden is being lifted.

For three of the last four days, my mother has required my assistance, which meant I spent most of the weekend with her. Now it is 11 am on Tuesday, and my adult students are in class writing their journals when a wave of exhaustion, accompanied by soreness in the throat, engulfs me. Only too aware that I have missed a couple of afternoons at work to check on my mother, I drag myself through the rest of the day. But work is not my only concern.

At lunchtime there’s a message on my mobile phone. It’s from the co-ordinator at Meal on Wheels. She needs to speak to me.

‘Oh, it’s Mum’s first day of Meals on Wheels. I hope she accepted the service,’ I say in an anguished voice.

‘The fellow who delivered the meal thought Jean was a little disoriented. She had a piece of electrical equipment in her hand, and she asked him if he could fix it,’ is the informative reply.

My mother’s response is understandable, at least to me. She would not be used to the fellow who delivered her meal. What’s more, coming from a world view in which men are good at fixing things, as her late husband was, she would have asked, since he was already at the house, if he could help with something she was unable to fix herself.

Later in the day it is Mum’s friend, Denise, who leaves a message. She had called in to return some washing she had done only to discover a salesman in the lounge room signing Mum up for a new service. Realising the fellow was taking advantage of my mother’s vulnerable state, the wrath of Denise was stirred. She sent him flurrying, papers unsigned. My mother told Denise that the fellow had been nice and she just needed a bit of company.

Then at 4.30 pm a woman from Alzheimer’s Australia rings to let me know she has spoken to my mother, who did not seem to think she has a memory problem. Furthermore, she could not recall being at the memory clinic. Immediately I pack up and catch the bus to my mother’s house. And there she is, sitting with a couple of neighbours sipping brandy. They soon get the message to clear out. I need to speak to my mother, in private.

My mother says the Meals on Wheels fellow didn’t want to stop and chat. (I explain that’s normal as he has many other meals to deliver.) Then we talk about it not being a good idea to let people she doesn’t know into the house. Reflecting on the event in question, Mum can’t help laughing at the way her friend ‘got stuck into the man’ and sent him off whimpering. As for the conversation with Alzheimer’s Australia, my mother explains there was someone else in the kitchen and she couldn’t hear properly.

There are now two versions of the one day. What to make of it all? One thing stands out: my mother is vulnerable, and the question is how to prevent the exploitation of her vulnerability.

The following day, the district nurse, a vibrant young woman, is assessing my mother, listening intently even though my mother repeats information several times. I stand over the other side of the kitchen, near the sink, not wanting the flu or virus I now have to contaminate my mother.

In the course of that assessment, I learn that as people age, their taste buds dull and they tend to lose their appetite. That helps me understand why my mother is rarely hungry; why it takes so much encouragement to get her to eat proper meals. So many times I ask her what she wants for lunch and she replies that she hasn’t decided. It’s a ploy. Her hope is that I will leave thinking it’s a question of menu choice rather than her reluctance to seek nourishment. Company, however, is the antidote. When meals become a social event, she eats.

As a family, eating the evening meal together was a daily ritual. It was usually programmed for 6.30 pm.

It’s 5.30 pm. Mum’s standing in the kitchen about to peek in the oven. The potatoes are browning and the roast lamb is nearly ready. Her make-up is freshly applied, and she has just changed her top in readiness for her husband’s arrival.

Around 6 pm, Dad slides open the kitchen door and, leaning down towards his wife, kisses her as she reaches up, almost on tiptoes. She listens to his musings about his day, then lets him know how long until dinner is served. The wait is never more than thirty minutes. That’s just enough time for him to relax in his armchair and have a cursory read of the evening newspaper. When Mum opens the kitchen door to announce that dinner’s ready, we all make our way to the kitchen table at which all four family members and any guests – usually neighbours or relatives – gather.

Once the children left home, my parents continued that tradition of eating together at the kitchen table. But once my father died, my mother put a portable television on the end of the table and made sure it was switched on at lunch and dinner times. It was her way of having company.

The district nurse also gives my mother a memory test. Had I known, I would not have just been through the calendar with her, pointing out what day today is, and what is on the schedule. My mother, who is still debilitated from the condition that landed her in hospital, scores 29 out of 30. This result is incredible. (It’s better than she scored in October last year during the ACAT assessment – 22 out of 30 – or in January at the Memory Clinic: 27 out of 30.) How can a woman who struggles to take all her medicine, confuses dates and times, lets strangers into her house and, at times, cannot recall in the evening if she has been taken out to lunch that same day, score so well? It does make me question what indeed is being tested.

This test does not seem to cover what I consider to be practical, daily life memory skills. And it does not seem to reflect the very real situation that, since her hospitalisation, my mother needs so much more care.

It’s all been organised. Denise will collect the medicine which has been packaged into a Webster-pak. The pharmacist has been advised that Denise will collect it at around 2 pm.

Just before 11 am, however, my mother rings me. She wants the medicine – now. I could tell her that it’s all organised; that she doesn’t actually need it until tomorrow. But when I find out she’s already rung the pharmacy and one of the sales assistants has agreed to drop it in, I simply agree.

Sometimes it’s better this way, to let Mum use her initiative, to feel she’s in control. However, to make sure all is in order, I make two phone calls: one to the chemist to check the details, and the second to Denise to tell her not to bother going to the chemist.

A celebration

For the last few weeks Mum may have confused days and dates, but she has been clear about 17 March, St Patrick’s Day, not so much for the saint as for the morning tea that has been planned in her honour.

The room in which my mother, her boss (the big boss, that is), her supervisor and eight or so by-laws workers are seated is the council chambers. Her boss, a smooth-talking jovial fellow, seats her at the head of the large wooden table as if she’s holding court. He sits beside her. My mother may have struggled over the last few weeks since her time in hospital, but today she chats, answers questions, listens to the banter and the laughter, and basks in the attention. If they notice a change in their workmate, the council workers do not comment.

My mother, a woman with a grand capacity for bluntness, surveys those seated around the table and then pipes up, ‘Where’s that creep?’

She’s searching the faces of all gathered, looking for an old foe, a by-laws officer who felt the need to report her for what she considered to be a trivial matter.

One of my cousins, who’s come along for the ceremony, gasps, while I fail to hold back my laughter.

‘That’s right, Mum, you can say what you like now. You don’t work for the council anymore.’

After the morning tea, my mother’s eloquent boss thanks her for her service and her positive attitude. She is then presented with a plaque honouring her thirty years of service, a bonus cheque for $750, and such a large bouquet of flowers that I wonder how we’ll fit it in the car.

Mum was determined to make the thirty-year service milestone. That’s why she refused to retire at the end of 2009. And that service has now been recognised. It is an excited ex-employee I drive home.

CHAPTER SIX

Shopping locally

March, 2010 Mum is sitting in the kitchen, the sun streaming in through the window warming her back. She is wearing a pink top with a collar and short sleeves that are made out of a bubbly looking material. She has dressed herself in dark pink pants, applied her trademark blue eye shadow, and she is wearing earrings.

‘I’m feeling stronger,’ my mother says.

And she is. It’s as if she’s regained her verve, although not to the same extent as before her recent hospitalisation.

As my mother is not driving at the moment, and is no longer able to walk up the steep hill between her home and the local shops, being driven is now part of the new care regime.

I can recall the end shop once being a tiny supermarket you walked around without any room for a trolley; it was like finding your way through a high-hedged maze. The take-away shop was once a haberdashery shop – one Mum regularly sent me to with a note and enough money to buy a zip, cotton, a sewing machine needle, or some other sewing accoutrement. The milk bar, the chemist, the butcher and the newsagency remain. Nearly five decades of business has brought them a loyal clientele.

At the pharmacy the two sales assistants greet Jean by name. One even leans over the counter, arms outstretched, and embraces her. It is a hearty hug. In the newsagency the welcome may not be quite so effusive but it is genuine and personalised. We have come to the newsagency – also the post office and the Tattslotto shop – to pay a couple of small bills. And in this department Mum exudes an I’m-in-charge attitude. She insists she will pay.

My mother is fine with me taking over paying the gas, electricity, phone and water accounts, but she still wants to pay small bills locally – like the newspaper delivery account and the cleaning bill from the council. It’s the social interaction which goes with the bill paying that she enjoys.

In the liquor shop Jean is well known. Her purchase, always the same, is brandy – the $23.99 brandy, easily reached on the middle shelf. Mum needs some assistance handing over the correct banknotes, but shopping locally is reassuring. Here, none of the shopkeepers would take advantage of her.

A birthday card

Sending notes and cards by post is a one of my mother’s favourite pastimes. Every evening from mid-November until just before 25 December, you can find her writing another note, another how-we’ve-been-this-year paragraph for each personalised Christmas card.

Mum also likes writing and sending birthday cards: to her son, her daughter, her three grandchildren, nieces and nephews, and to friends. So I’m not surprised when I walk into the spare room and to find a ‘You’re 50’ birthday card.

‘How fabulous,’ I almost say aloud. Mum has remembered my partner’s special birthday. However, I’m surprised to find ‘To Dear Michele’ written in it. ‘Oh no, she’s remembered the fiftieth, but confused the person,’ is my initial thought.

But I’m mistaken. Mum bought this card for my fiftieth birthday last year. And she’s just found it. So in a moment of creative inspiration, I suggest she cross out my name and replace it with my partner’s. It’s an idea that instantly appeals. And seeing ‘Love Mum’ she quips, ‘Why don’t I put Mum-in-Law?’

Unsure how that might be received, my initial thought is to say it’s probably best not to. Thereafter, a mini brainstorm session ensues.

‘Why not put Almost Mum-In-Law?’

My mother thinks this is fabulous. In her characteristic looped lettering she adds ‘almost’ above ‘Mum’, and ‘in-law’ below it. And just in case he’s confused, she adds a comma and signs, ‘Jean’.

My mother may have Alzheimer’s, but it has not dented her penchant for humour.

On the morning after the start of football season, I arrive at Mum’s with a gift: a brand new Hawthorn football scarf that I’ve received with my membership. Mum is thrilled. When I show her a page of club stickers, she selects her favourite and it is soon stuck on the front kitchen window so everyone who comes to the front door will see she’s a happy Hawks supporter. I also mention that my partner will be going to see his football team play tonight.

‘What did he think of the birthday card?’ she asks, and is delighted to find that he enjoyed the joke. For myself, I’m impressed that Mum remembered the card and what she had written in it.

A special nurse

A number of district nurses attend to my mother, checking the patient and her medication pack. Each one has a distinctive presence: a way of approaching the patient and the task they must undertake. Among them are the task-oriented, the I’m-in-a-hurry few, the efficient, the courteous yet detached, and the ones who are really present, whose care is far broader than the medical task and accompanying paperwork they are required to complete.

The district nurse who arrives today has short red hair, an open-faced smile and a confident, earthy demeanour. And she is most interested in her patient. My mother interprets this as an invitation to launch into her own well-recited, life-defining stories: I worked thirty years as a crossing supervisor; my husband dropped dead in the kitchen – close to where we’re sitting; and I was a milliner in George’s department store. Mum has also learnt to pause long enough between stories to allow for audience reaction.

‘Ooh, a milliner!’

When the district nurse checks my mother’s blood pressure, she relates one of her own tales.

‘I really loved my grandmother. She was a milliner, too, who could make anything, not just hats. And she made such wonderful clothes,’ the story-teller begins.

And seeing she has our total attention, she continues, each word spoken clearly and slowly in a down-to-earth Australian accent. ‘When the clothes wore out I just couldn’t throw them away. They were too precious. Instead, I cut them up and made clothes for my teddy.’

Our visiting storyteller also happens to make some salient suggestions as memorable as her story. First, that I should check each of Mum’s medicine packs, as it’s easy for the pharmacy to make an error; second, that my mother requires ongoing weekly monitoring by the district nurses as one of her medications can have a cumulative toxic effect in which the heartbeat can drop to under fifty beats per minute. (I’m wondering why no other medical professional has passed on this information.)

The nurse who loved her grandmother also attempts to teach me how to monitor Mum’s pulse, but with an irregular heartbeat it’s a challenge. The two weeks of daily monitoring of my mother by a district nurse are now coming to an end. Provision must now be made for weekly visits and Tuesday is the appointed day. However, the nurse realises that it needs to be at a time that does not interfere with Communion, which is brought to my mother each week by a pastoral worker from the local church. (As Mum now finds it too difficult to go to Mass, she appreciates that an integral part of the Mass – Communion – is being brought to her.) This nurse’s presence, her genuine concern for my mother, and the information she provides, are impressive.

As the nurse packs up she says, ‘Just enjoy having your mother around.’ It is a comment which lingers.

Not attending

The last evening in March, I’m one of the guest speakers at a function centre which is only a five-minute drive from Mum’s home. It’s a promotion by the publisher of the latest book I co-authored. One hundred and eighty people have gathered. It’s the kind of event my mother used to enjoy.

I recall how proud she was at my first book launch; dressed for the occasion, she revelled in her respected place at proceedings. That was in 2006, a little less than four years ago. Now, however, she finds crowds and noise overwhelming, so I dare not mention the event.

Recently, a friend who lives only a few streets away invited Mum to join her and her sisters for lunch. Before they had finished the meal my mother asked to be taken home, immediately. She didn’t feel well. Later, when I asked how it went, she explained that there was too much noise; that it was simply too much for her.

Mum didn’t attend her niece’s daughter’s wedding outside of Melbourne on the weekend either. My cousins were so looking forward to seeing her. They have always loved my mother. Their own mother (my Aunty Marie), now deceased, was my mother’s older sister.

Living only two suburbs apart, the sisters had ensured that their families grew up together, shared their lives, their losses, their football team and their celebrations. They spoke on the phone nearly every day, and as old age made its presence felt, occasionally one of them would fall asleep during their evening chatter. (However, no offence was ever taken.)

Now, however, Mum feels a country wedding would be too much for her. And it would have been. Our side of the family danced until one in the morning, but the Irish contingent stayed up all night.

CHAPTER SEVEN

Plans

April, 2010 The question of Mum returning to respite was mooted by her GP some weeks ago.

‘Your daughter will have a much more relaxed holiday if she knows you’re being well looked after in respite,’ he said. He had been well briefed.

For my mother, this was not a disturbing conversation. She agreed, on one condition – that she stay at Lovely Gardens. (Fortunately I had already made a tentative booking to ensure the required dates were available.) However, to make the offer even more appealing, there was an added enticement: to have her kitchen and bathroom painted while she was in respite.

The kitchen may well be the centre of the house in my mother’s view, but if there’s one room she’s proud of, it’s the bathroom. The family home used to have a tiny room for the toilet – or ‘w.c.’, as it says on the house plans – and next to it a small bathroom with a shower, a pink bath and a wash basin, with just enough room to stand and dry yourself. Once my brother required wheelchair access, after an accident close to three decades ago, my father knocked out a wall, made it one large room, installed a French window, and with Mum’s selection of paint, tiles, gold tap fittings and a heated towel rack, it became the most stylish room in the 1950s-built house.

In recent years, however, courtesy of the drought, the bathroom wall has developed such a large crack that my mother almost curses each time she sees it. When my father was alive it would have been fixed immediately. However, I do not feel my do-it-yourself skills are adequate. And until now, other aspects of my mother’s care have taken precedence.

The plan was tightly scripted. I would settle Mum into respite and then meet with the painter, who would begin his labours in the bathroom. A few days ago, however, the painter rang to say he could not come on Monday – Mum’s first day in respite. The negotiations that ensued resulted in us agreeing to him coming the day before, on Easter Sunday. That meant Mum would have to put up with paint fumes for one night. Fortunately she agreed.

I thought we had bought a light-grey coloured paint with a touch of pink. Mum, my partner and I had gone to the paint shop together. It was important to involve my mother in paint selection – after all, she has a knack with colours and textures. But as the paint is being rollered on, I am shocked to discover it is blue. When the first coat has been applied, I ask my mother’s opinion. She stands at the doorway, perusing. It is clear her judgment will be a considered one – and a positive pronouncement keeps plans on schedule.

During the course of Easter Sunday, when cousins and friends ring, Mum tells them she’s going into respite and what a good place it is. I just hope she speaks as glowingly about it in a couple of weeks’ time.

Without much ado

The nurse at respite is busy. Since there are medications to be handed over and some instructions and contacts to be arranged, I must wait. Oblivious to all of this, Mum strolls into the lounge area and begins chatting to a silver-haired fellow, who, on seeing there are no vacant seats around him, offers my mother a seat on his lap. And sit she does.

‘That’s my mother,’ I say to myself.

Men have always found her attractive, and at eighty-eight whatever she has does not seem to have diminished.

Before departing Lovely Gardens, I tell Mum that I’m leaving for a five-day retreat in New South Wales tomorrow, but I’ll be back in six days’ times, on Saturday, to see her. I’ll get her kitchen painted on the Sunday and then I’ll be away with my partner camping in a national park for the following week. Mum can ring my brother if she wants anything, or Denise, who’ll be happy to help out. My mother nods. Message understood. Then without much ado, Mum waves me off and returns to her newly acquired friends.

Both laughing

It’s Dad’s birthday – 10 April – and I think he would have turned 82 today, had he been alive. He would have hated going into respite, and detested the thought of living permanently in residential aged care. But Mum – well, she enjoys company.

In the communal lounge room, my mother is sitting with three friends, a new fellow seated beside her. This is no mean feat in a place where women outnumber men by around four to one. It is 8 pm, and they’re watching the Bombers versus the Blues AFL football match on the big screen. Mum’s delighted to see me and I’m more delighted to find that she’s not in a hurry to leave respite.

Mum looks well and is in fine humour. Apparently she’s been telling the staff and residents she’s only in respite while her kitchen and bathroom are being painted. When we move to her bedroom for a private chat, the topic swings to the man who was sitting next to her.

‘He always wants to hold my hand, and he kisses me,’ she says, then adds with some authority, ‘but I know how to handle him.’

‘Is he married?’ I ask. ‘Does he have a wife?’

Mum’s not sure.

‘Mum, I notice he has such a beautifully ironed purple shirt on. Do you think his wife might be at home ironing for him?’

I then suggest being careful, just in case the fellow in question is two-timing her. And with that we’re both howling with laughter – the daughter who has taken on a mothering role, and the mother who is free to be as carefree as an adolescent.

Another sign

It’s Mum’s first full day home since leaving respite. While she speaks glowingly about her two-week stay at Lovely Gardens and the staff and residents there, she’s also sure she’s not ready to sell her house and move in. Not yet. However, she’ll miss the company. Home is so much quieter.

My brother will take Mum out this afternoon for coffee. It’s a regular Sunday outing. He often visits on Wednesday evenings too, with a couple of his daughters, who are now galloping out of their teenage years.

This morning, however, I take my mother to an open garden close to my place. She enjoys meeting my neighbours, the picturesque garden and the bright sunshine. However, she’s struggling with her walking. It’s her vascular system. When she tries to walk up an incline, no matter how slight, the blood just doesn’t seem to pump fast enough through her legs. It really tires her.

It’s another sign that Mum is ageing; that parts of her body, not just her memory, are in decline. Parts of her are simply wearing out.

Important information

When I arrive at my mother’s, she’s sitting at the kitchen table wearing a pair of old green slacks and a pink top. Her eyebrows are yet to be pencilled onto her face, and no eye shadow, foundation or lipstick have been applied. Nor has her hair been combed. This is not the way my mother wishes to present herself to the world.

‘Mum, we have an appointment with the occupational therapist at the memory clinic this morning. We have to leave in five minutes.’

My mother has completely forgotten. The two phone calls I made to her yesterday, reminding her, have failed to spark the correct memory connections. And the pressure to reduce her get-ready routine from forty-five minutes to five has her in a flap.

Taking command, I tell her to draw on her eyebrows as I select an appropriate top for her. While she changes and then brushes her hair, I find her Medicare card and driver’s licence, make her a slice of raisin toast to eat in the car, and make sure she has shoes on, not slippers. As we’re about to leave the house, she’s so flustered she looks for her Valium.

‘No, you can’t take that. It’ll upset all your reaction times that are being assessed this morning.’

I’ve been away for a couple of weeks and am out of the rhythm of going at Mum’s dawdling pace, and, more importantly, of making a reminder phone call to my mother early in the morning on appointment days.

The question of driving has been delicate. Until the end of last year, my mother’s GP and medical professionals at the memory clinic were happy for Mum to drive within a 5-kilometre radius from home. However, after Mum’s recent hospitalisation, she was advised not to drive until she was feeling a lot better and had a driving assessment. That’s why we’re here today – there are formalities to be completed prior to the practical test next week. One of those formalities is checking Mum’s reaction times.

The occupational therapist, a lovely warm woman with a heartening smile, is talking to Mum, getting her to fill out some paperwork. The occupational therapist will accompany my mother as she drives a dual-control car with a driving instructor beside her. Mum vacillates between wanting to drive and giving it away. I think it’s worthwhile going through the process to find out if she has the skills or not.

Between appointments, we order toasted sandwiches at Mum’s favourite local café.

During lunch Mum pipes up, ‘That fellow, Joe, we met on Sunday – he was lovely wasn’t he?’

She is talking about my neighbour who had the open garden. Mum only met him once and I am astounded that she’s committed his name to memory. Other information – like the time we’re to meet – can be repeated many times but is not retained.

This afternoon, when we’re both in the car, I broach the subject of respite. Mum says if anything happens to her in the future and she’s unable to return home, Lovely Gardens, which she’s now familiar with, is the place she wishes to go. She doesn’t mind that it’s not Catholic.

‘The lady from the Church of England came and she gave me Communion,’ she says.

I think Mum means the Uniting Church.

Ever the pragmatist, she adds, ‘If she’s good enough to come, then why not take Communion from her?’ Besides, my mother tells me, ‘Once you’re over 70, you don’t have to go to church anyway.’

Going to a Catholic place to live is no longer Mum’s top priority. This is important information. It gives me an idea of what her future care plan might entail.

And she’s not the only one giving this subject some consideration. I thought it was a priority to find an aged care residence where Mum could ‘age in place’ – meaning it can accommodate low-care and high-care residents. But after consultation with Mum’s doctor, we now hold the view that if she’s happy with Lovely Gardens, even though it’s only low-care, then let her enjoy that. As the doctor pointed out, with my mother’s vascular condition, there are no guarantees on her living another few years. (I laugh at that remark, as I’ve been told that since I was a small child. The plan was to send me to boarding school if she didn’t survive.)

CHAPTER EIGHT

A lump

Late April, 2010 The morning sun showers its light over my back garden. The ornamental grapevine, which grows with gusto from November until March, has an upper layer of green leaves with a red tinge, and a lower layer of large rusty red ones dappled with green, both catching the morning light. The wind blows, the leaves rustle, and there’s a sprinkle of yellowish autumn leaves from the tall trees bordering the fence. A carpet of reddish, brown and yellow leaves covers the back patio. It’s one of those days where all I want to do is sit and watch. Watch and wait. Wait and wonder.

Not to be outdone, the gumnut tree, regal as ever, has burst into bloom. Pods of umbels have popped their tops all over the tree, and skirts of pink stamens are tantalising the bees. They cannot resist. It’s bliss for the bees and natural beauty to the human eye. Soon clusters of empty umbels will be all that remains of this spectacle.

This morning I have time to write, to reflect, to be. In the afternoon however, the rhythm of my day will change as I’m accompanying Mum to the doctor to have a viciouslooking lump on her lower left arm removed. Hopefully it’s not cancerous.

Afterwards we retire to her home. Mum requires someone to stay the night to check the wound for bleeding – doctor’s orders. While the patient rests, I begin trawling through an old stack of papers in the kitchen and soon discover a letter from the local hospital about a forthcoming appointment which happens to be on a day on which my work commitments must take precedence. What’s more, there’s a bill from the pharmacy department at the hospital threatening legal action if the account of $48 is not paid promptly, and the due date was two weeks ago.

I’m beginning to wonder if I must contact and advise each hospital department individually, including the pharmacy, that I need to receive a copy of all of the patient’s hospital correspondence.

My other task today is to talk to the broker who arranges Mum’s home insurance to check if her house is underinsured. The negotiations with the broker are drawn out, so much so that the painter who has come to fix a few spots in the newly painted kitchen is standing in front of me waiting for instructions while I try to extricate myself from the phone conversation. It is while this is happening that Mum appears in the kitchen, a sense of urgency in her voice, announcing that the washing machine has blown up.

‘Mum, I’m on the phone to the insurance company and I need to talk to the painter. You’ll just have to wait,’ I respond with more than a flicker of irritation.

Five minutes later, insurance organised, painter having received his instructions, I ask Mum to show me the problem with the washing machine. Having just replaced her microwave last Saturday – the day she came out of respite – because her old one blew up, I’m beginning to picture myself back in the electrical store. Luckily, when I turn the switch on at the power point and twist the washing machine dial, the machine kicks back into spin mode.

That evening, we have two weak brandies. My mother, however, does not realise she has had two. ‘When did we have the second one?’ she asks, looking for it in the glass on the side table next to the armchair in which she is reclining. Her second drink, made at half strength, is long gone. Monitoring Mum’s alcohol intake has been one of the issues discussed at the memory clinic, and to date, an appropriate and effective strategy is yet to be determined.

Mum and I watch TV until she decides that sleep beckons. But sleep is short-lived. Her arm is now throbbing. Soon she’s rummaging around the kitchen desperately looking for Valium. It’s not in the medicine box, not in the medicine cupboard, the fridge, the bathroom, or by her bed. Nor is it in her bedside drawer, in the spare room or the lounge room. Finally, it is discovered. It’s in her new handbag. No prizes for that discovery, just a relieved mother.

Shoes

I’ve been writing most of the day, even though it’s a Sunday, and I need a break, so I ring my mother.

‘Mum, would you like to come with me to the nursery?’

‘Yes, that would be nice,’ she responds enthusiastically.

We walk on the gravel path surveying the greenery: herbs and grasses, shrubs and trees, natives and exotics. My mother, a woman who takes great pride in her garden but is no longer able to toil in it, loves the roses, while I prefer native flora. As we edge our way along the aisles of greenery, Mum’s movement is slow, and at times unstable. And I’m wondering why she’s chosen to wear shoes with a heel.

‘I haven’t got any flat shoes,’ she responds when asked.

Surely the flat pair of shoes with holes in them that I threw in the rubbish last week weren’t the only ones she had.

That idea seems preposterous. At times, I must admit, I’ve thought of my mother as a mini-Imelda Marcos, since her wardrobe is neatly stacked with boxes of shoes, four or five columns wide, and five boxes high. When we return to Mum’s, I push aside the clothes hanging in her wardrobe and delve into the shoe stack. Inside the shoe boxes are pink, white, silver, gold and even black shiny leather shoes, all with heels. What’s more, many of the boxes are empty. I must therefore conclude that my mother is correct: she does not have any flat shoes. And she most certainly needs them.

At this thought, I curse. I don’t mind accompanying Mum to medical appointments, checking her medications and meals, cooking, or even organising logistics, but I detest shopping, most of all for shoes and handbags. And the thought of being dragged reluctantly around a shopping centre at the pace of a lumbering echidna is almost too much to bear.

To drive or not to drive

There’s one thing about being your mother’s daughter: you can instinctively interpret her moods. This morning I can tell Mum is tense. She barely comprehends anything I say, and there is a mention of Valium, although she’s not to take one before her 10 am driving assessment.

We try not to use the word ‘test’ as it only serves to heighten my mother’s stress levels. Still, whatever name the drive-and-let’s-see scenario is given, Mum realises that if she doesn’t pass she’ll be barred from driving and her licence will be handed in. For my mother, this is not an appetising thought.

The test will take place in a driving instructor’s car, a vehicle she has not driven before; the instructor is a man she has never met. They will be accompanied by the occupational therapist, who will sit in the back seat. It is the occupational therapist’s assessment which is crucial.

My mother will drive around her neighbourhood – to the doctor, the shopping centre, and her favourite bakery. All are places she has driven to for more than four decades. All are locations imprinted into her long-term memory. To begin the assessment, she will navigate herself. Later, she will follow instructions.

It is a relieved 88-year-old female driver who returns home. The occupational therapist says she’s fine to drive. And Mum will repeatedly tell me – and anyone else she happens to speak to over the coming weeks – that the driving instructor said she was a good driver.

My mother has now been restricted to driving in a 2-kilometre radius from home, which by her own reckoning is all she needs. The driving assessment also provides reassurance, not just for motor vehicle insurance but for my mother and others out on the roads, that she still has sufficient skills to drive – safely.

The key

The following Sunday afternoon, my partner and I are cutting down creepers and bushes that have become entwined in Mum’s old sagging backyard fence. We’ve been slashing, sawing and clipping for a couple of hours, making way for the new fence. My brother will soon arrive to take Mum out for coffee. It’s a weekly ritual that my mother prepares for, making sure her clothes, scarf and bag match, and her hair and make-up are just the way they should be.

At around 3 pm, Mum stands on the back step and peering out towards the boundary of her property yells out, ‘I’ve locked the front door. I’m going to wait out the front. Can you lock the back door on your way out?’

Her voice arches over the mass of purple bougainvillea which grows with abandon over the brickwork dividing the garage and the paved part of the backyard from the lawn area.

‘Sure,’ her gardening team replies in unison.

Ten minutes later, my mother walks back down the driveway and up the four cement steps to the back door.

‘I’m going to wait inside,’ she says, opening the wire door.

My mother is still inside when, fifteen minutes later, I make a cup of tea. But our break from cutting and slashing is not a tranquil one. Mum soon realises she has misplaced the front door key. It’s not in the door, in her purse, in her bag or in the pot plant. Nor is it anywhere to be found in the kitchen, the meter box, the bathroom or any other room. What’s more, I can’t lend her a key, as I didn’t bring one with me. The solution, I suggest, is to keep the front door locked and use the back door until we can locate the key, or get another one made. Mum’s fine with that, and heads out the back door as soon as she catches a glimpse of my brother’s car in the driveway.

On the way home, it occurs to me that while Mum was not able to drive over the last couple of months she always had someone accompany her when she went out; someone to check that she had the front door key, that the house was properly locked and that she had her bag, and more than coinage in her purse. Now, however, as she begins driving herself, and ventures out on her own, that added level of security disappears. Until this afternoon, it was an aspect of Mum’s return to driving that I hadn’t contemplated. And it is one that I am now forced to face with more than a tinge of dread.

Mother’s Day

May, 2010 ‘Mum, there are some shoes at a chemist near my house. They look really comfortable … nice and flat. Would you like me to take you there?’ I ask over the phone.

‘Yes, that would be good,’ she replies.

I relented. I had to. Mum needed new flat shoes, and who else was going to get them for her? Besides, there was a shoe sale at the chemist I often walk past.

Arriving at Mum’s house, I notice that the old key is in the front door.

‘Where did you find it?’

‘It was on the step, near the garden,’ says Mum, pointing towards the front yard. She found it the day after it was lost, when she went out to collect the mail.

On the way to the shopping centre, a journey of no more than 4 kilometres from my mother’s house, Mum inquires, ‘Where are we going?’

‘To the chemist near my place, to get you some flat shoes,’ I reply.

‘Oh,’ she says with a gentle shake of the head. ‘Sometimes I forget.’

A few minutes later, watching the traffic, noting how heavy it is, my mother says, ‘Michele, I had a driving test last week and the instructor said I was a good driver.’

‘Yes, Mum, I know. I was there when you had the test. I spoke to the occupational therapist afterwards.’ I tell her the truth because I’m not sure what else to say.

‘Oh yes,’ my mother replies, with a detectable tone of tiredness. I suspect she’s tired of not being able to remember things, although I’m still not sure how aware she is of the degree to which Alzheimer’s affects her life. Recently we were having a chat with one of the district nurses who visits my mother. When Alzheimer’s was mentioned, Mum piped up, ‘It’s just at a very early stage’, as if it didn’t really matter.

At the chemist, once the shoes are tried on and selected – a lovely pair of stylish, flat burgundy shoes – we tender payment. With Mother’s Day looming, my mother cannot restrain herself from inquiring if the sales assistant has children.

‘Yes, a daughter, seventeen, and a son, twenty-three,’ is the reply.

A boy and a girl. My mother can relate to that.

‘It’s not easy with my daughter,’ the saleswoman says with an aspirated, if not exasperated, sigh. My mother’s fleeting interest is the only cue the saleswoman requires to unleash her tale of exuberant frustration.

‘My husband can say anything to my daughter and she stays calm. But me, I hardly say anything and she blows up.’

‘Mum knows that story well,’ I say. Soon Mum and the saleswoman are comparing notes. When it comes to female progeny, they have much in common.

Today is Mother’s Day. I’ve selected a card I’m sure will appeal to my mother. There are three roses on it, all a gentle shade of pink. Underneath the roses, printed in white, are the words Happy Mother’s Day. When I give it to my mother she comments on how pretty the roses are, then opens the card. My wording is simple: ‘Mum, Happy Mother’s Day. Thanks for being my Mum. Love, Michele.’ She reads it, and then bursts into tears.

‘That’s so lovely,’ she says.

There are many times I would not have been able to write this sentiment – meaningfully.

And I have cultivated a habit of not expressing what I do not sincerely believe. But I can say this honestly now, so I do.

I recall the last Father’s Day card I sent Dad. I was living overseas at the time, and being unable to find an appropriate card, I made one, then wrote a poem inside, about how much I’d learnt from him – how much he meant to me.

I never actually saw my father after he received the card. (He died suddenly when I was in the US, on my way back to Australia for a visit, after eighteen months living in El Salvador.) But Mum told me how thrilled he was with my creative piece. How it went straight on display in the centre of the mantelpiece in the lounge room. Now, seeing Mum so happy with her card, I cannot help but wonder if this is one of the last I will write for her. That thought is definitely lurking.

I’ll check

It is the Tuesday after Mothers’ Day, and the evening is well advanced as my partner and I arrive at Mum’s house. As we turn into her driveway we notice two things. First, my mother’s car is parked in the driveway, not in the garage. Second, my mother is sitting inside her car, the rim of her glasses shimmering under the glare of my partner’s vehicle’s headlights.

‘Mum, what are you doing?’ I ask, totally perplexed as I jump out of the car.

‘I didn’t think you were coming, so I thought I’d put the car away,’ she replies, then adds, ‘but I couldn’t work out how to turn the headlights on.’

‘Hop out and I’ll have a look.’

The difficulty Mum is having with the car is that the automatic stick shift she needs to use does not light up until the headlights are turned on. And since she cannot remember how to turn the lights on – she hasn’t driven at night for well over a year – she has no idea if once she moves the gear stick out of park, the car will be in drive or reverse.

I’m collecting my mother’s car to take it for a service, so we are keen to get going. However, just before leaving I decide to check if there’s any new mail in the kitchen. But as I open the door, all I can see is a room full of thick smoke. Where is this coming from? What’s going on?

Mum had left her satin-looking nighty and her dressing gown to warm on the kitchen heater while she went out to move the car. Each minute she was delayed outside, the heater became hotter. Now, the nighty is singed all over, and it’s only when I turn the heater off and open the doors that the smoke dissipates.

‘Mum, it’s best not to leave your clothes on the heater,’ I say, to which she immediately agrees. It is a new rule which will require frequent winter-time repetition.

CHAPTER NINE

Happy birthday

May, 2010 It’s a brisk morning. Winter is on the way. The shiny reddish-brown autumn leaves on the ornamental grapevine that skirt my balcony are now faded and blotchy. Some are crinkled; all are dying.

When I ring Mum this morning to remind her that I’ll be over to collect her at 12.30 pm to take her out for lunch, she wishes me happy birthday. She has remembered. We now have a usual place to eat, and we’re often served by a sturdylooking Italian woman with a gusto for life, a love of laughter, and a gift for soup-making. Her minestrone is enough to take away the winter blues. ‘I cook for the customers like I cook for my grandchildren. No preservatives. All fresh,’ she says, as proud of her culinary traditions as her cultural ones.

Today Mum recognises the woman who works in the kitchen, but says she’s not sure where she knows her from.

‘You know her from when you used to collect the milk money,’ I respond.

Year ago, when Clydesdale horses clomped down the street predawn, the milkman running behind them, scurrying from house to house delivering milk in glass bottles, my mother walked the same streets. During daylight hours she went from house to house collecting payment for the milk accounts on a regular basis.

‘How do you know I know that lady from collecting the milk money?’ my mother asks.

My answer that the woman told us last week silences my mother, but only for a short time.

About three minutes later she asks, ‘How do I know that lady?’

Meaning seems to move across the words my mother hears, and then, like stones skipping across a river, suddenly sink.

Perhaps because it is my birthday it’s easy to recall who Mum was only a year ago: school crossing supervisor, legendary family cook and independent mother. And to recognise which parts of her life are fading. There’s a withering of part of who she is, or at least, who she used to be. I am reminded of the philosophical notion that we are always in the process of losing everything we have.

The week after my birthday, my partner and I pop in to see Mum before we go out for dinner.

‘We’ll just check how she is, and have a wee brandy with her,’ I suggest on the way over.

My partner often visits Mum with me on the weekend. They really like each other. He enjoys joking and bantering with his almost-mother-in-law, and Mum is so thrilled I’ve found a delightful, caring partner. She prayed to St Anne for years to find me a husband. How gutted she was when one of her friends informed her she’d been praying to the wrong saint. And for a while she even resorted to St Jude on my behalf – the patron saint of hopeless cases. (It seems in the Catholic culture there’s a saint to suit most requests. And on the list of saintly service, my mother seems to know who does what. Well, at least for most of them.)

Today, upon our arrival, the bar is opened. It’s a mirrored, well-lit cabinet in the kitchen – undetectable until the wooden cabinet doors, with the same veneer as every other kitchen cupboard, are opened. As I pour the brandies, my partner notices a wad of $5 and $10 notes tightly squeezed into a large glass. There’s so many they’re fanning out over the edge of the glass like the top of a palm tree.

‘What’s this for, Jean?’ he asks ever so innocently.

‘That’s the money for Saint Anthony. Every time I can’t find something I pray to him to help me. And just to make sure he does, I put $5 in the glass. Sometimes, if it’s really important I give him $10 … It’s money for the poor box,’ she adds.

‘There must be a couple of hundred dollars in there,’ my partner notes.

And I can’t help thinking about the lucrative trade Saint Anthony may now inadvertently be doing with elderly, dementia-affected Catholics.

Wiggle room

June, 2010 By my own reckoning, Mum is on the point of requiring medication to stabilise her memory. And I’m advocating stabilising it at the highest possible point, which I believe means that she has to score less than 25 out of 30 in the mini-memory test at the memory clinic today.

At 1.30 pm, taking a break from gardening, I discover a message on my mobile phone.

‘Michele, I’ve cancelled the memory clinic. I don’t feel well,’ Mum is saying.

I’m shocked and stupefied as much by this news as by an instantaneous explosion of frustration and anger which overwhelms me. Taking a few deep breaths, then a few more, acts like a blanket of calm. I attempt to extinguish the unexpected fury before calling my mother.

‘Mum, I just got your message. What’s going on? Why did you cancel the memory clinic?’ I ask, an unmistakable edginess in my voice.

‘I don’t feel well,’ is the one reply I cannot accept.

‘Listen, Mum, we’ve waited months for that appointment. We have to go. Otherwise it will be months before we can get in again. Let me ring the clinic and I’ll ring you straight back,’ I say with an air of authority.

The receptionist at the clinic says Jean rang and said she couldn’t get there; she can’t drive that far and she didn’t have anyone to take her. ‘I did wonder about that, but I knew you had a copy of the appointment information, so I didn’t cancel the timeslot. I thought you might be on your way.’

I ring Mum back, tell her I’ll be over soon, and if she’s really unwell I’ll help her get dressed. When I arrive, she’s dressed and out the front of the house checking the mailbox.

In our meeting with the consultant geriatrician and the social worker at the memory clinic, my mother is given another memory test. At one stage she is asked, ‘What month are we in?’

‘April,’ my mother responds, pausing to consider her answer.

A few seconds elapse. Then she reconsiders.

‘No, it’s May.’

The geriatrician reconfirms my mother’s response, but Mum is still working on her answer. Then, as if having had a sudden breakthrough, she says, ‘It’s my birthday tomorrow. It must be June.’

Technically, the answer is correct. (My mother is aware of her birthday. This morning I reviewed the calendar with her, pointing out the dinner I’ll have with her on Thursday night, and the morning tea we’ll have with a few friends on Friday morning.) Peering over paperwork from the other side of the room, however, I have the sneaking suspicion that my mother has been given maximum marks for her answer. The question I have is this: how much wiggle room is allowable? It seems the answer to this question could, in part, account for the wide range in memory test results that my mother achieves (22 out of 30 during the initial ACAT assessment, 27 at the memory clinic in January, and 29 with a district nurse in March).

When the score is tallied, there’s some discussion about Mum’s answers. And I’m keen to point out that knowing it’s her birthday tomorrow has significantly helped my mother answer two questions. Being on the borderline between being medicated and not being medicated, the interpretation of these answers may swing the outcome.

What is also difficult is that my mother is sitting in the room with us. I’d prefer to speak privately to the medical assessors, but that option isn’t provided. Not this time. So in the middle of my discussion with the memory clinic staff, I turn to Mum and explain that if she were medicated, it would hopefully stabilise her memory – all part of our ‘stay stronger for longer’ strategy. My mother listens.

Of this I am sure: Mum trusts me and believes I’ll advocate for what is right for her. And I will – as well as I can. But I’m new to all of this too – the unravelling world of memory loss. I’m trying to make sense of it all. And sometimes I just hope I’m doing the right thing by her. It’s a burden I’m not unaware of.

Finally, it is decided by the geriatrician that Jean qualifies for medication. There is, however, one concern – her heart. Recent ECGs will be checked before giving the all-clear for my mother to begin the medication.

‘What’s the process from here?’ I ask.

If the geriatrician thinks Mum’s body can cope with the medication she’ll send off the prescription for government approval, and then in a couple of weeks I’ll receive a prescription in the mail. Furthermore, my mother must be monitored every day for the first month that she takes the medicine. She’ll then come back, around September, for review.

‘And if the medication isn’t suitable, what’s the process?’ I ask the medical specialist.

‘Well then, there’s nothing more we can do.’

Mum does not seem worried by the last comment, but for me it’s like being stuck at a border crossing in a dicey part of the world without the necessary visa. No-one cares. No-one helps. You’re just on your own, desperate for some creative inspiration. And the thought of being mostly on my own again through Mum’s unpredictable journey with Alzheimer’s is crushing.

My partner, with whom I often debrief, is more upbeat.

‘They’ll probably put your mum on the medication, Michele. Just wait and see.’

Later, I speak to a friend, a retired psychiatric aged care nurse, and tell her I’m a little perplexed. The morning of the appointment at the memory clinic, Mum had seemed fine when I spoke to her over the phone, and she appeared composed at the appointment and afterwards. My friend suggests that deep down Mum probably didn’t want to go to the memory clinic appointment because it was threatening to her. She didn’t want it proven that she has memory problems, so she gave an acceptable excuse to the clinic – she couldn’t get there. And to me, the only acceptable excuse she could come up with was not being well. And, in fact, tension about the appointment may have caused her to feel unwell.

‘But you have to be firm with her, be definite and not give too many choices, not too much wiggle room. After all, she needs the security of knowing you’re taking charge, and you’ve got things under control.’

Memories

The view from my back balcony, which frames my morning glance at the world, is well past its fecund, verdant season. The leaves on the vine have thinned, and although some still cling to the wooded branches, there’s a skeletal bareness that pervades. Even the pride of my garden, the gumnut tree, is replete with well-faded, drooping stamens.

Mum and I have been drooping too this last week, our intestinal systems thrown into chaos by a bout of gastro. The only time I dragged myself out of the house was to check on my mother, primarily her intake of fluid and medicine. Fortunately we’re slowly recovering. However, this morning she still requires a blood test.

We sit in the local clinic waiting area, and Mum spots an old friend, Faye.

‘How are you?’ is followed by a laugh and an acknowledgement that being octogenarians it’s best not to ask. Reading one of the well-flicked-through magazines, I can’t help overhearing their conversation.

‘Remember St Penguin’s?’ Faye says with a hearty laugh.

Over five decades ago these women of Catholic faith and upbringing wanted a church community for their families. And since there wasn’t one, they set about creating it. Not having a building did not deter them. Church services soon began at the back of the Penguin Dry Cleaner’s shop – hence the name St Penguin’s. It’s a memory that Faye and Mum enjoy. And it’s reliving these memories in her local community each time she goes out that makes Mum sure she’s not yet ready to leave her home and move into an aged care residence.

‘Your mother has been so active in the community,’ Faye says when Mum is called to her appointment.

Faye would know. Like my mother, she worked on the committees to build the church and the school. They also served in school tuck shops, drove the religious sisters back to the convent after school, and organised fundraising events.

There is more, however, that Faye and my mother have in common. Mum lost her firstborn – my eldest brother – soon after birth; years later, paraplegia laid a claim on my other brother; while Faye lost the youngest of her three sons in a car accident. I hold Faye’s hand as she speaks about her youngest – tears welling.

‘When God wants you, he takes you,’ she says. It is a belief my mother shares.

The beauty of shared memories is that they can mirror back our lives, in a congratulatory way. ‘Job well done’ is the unspoken theme of interactions my mother often has when reminiscing with treasured friends.

Mum and her old neighbour, Lee, or Aunty Lee, as I call her, are admiring the bright yellow tulips at the nursery café where we’ve gathered for a birthday lunch for Mum.

Aunty Lee is one of my mother’s closest confidants. Their bond of trust precluded gossip or giving advice, unless the latter was sought. Aunty Lee, her husband, Uncle Alex, and their three children were the family next door we grew up with; two families that became so entwined it was often difficult to tell where one family ended and where the other began – especially at mealtimes. We came to know and love Aunty Lee’s family just as she came to know and love ours.

These days Aunty Lee no longer lives in the same street as my mother, but they do share old stories – often innocent day-to-day happenings involving their children, which over time have taken on a life of their own. Some of those stories, regularly recited, became family legends. And my mother is often a central character.

Raised during the Great Depression, stern discipline seemed as natural to my mother as fun and pranks to her progeny. One summer holiday, Simon, the boy next door, and I were playing with our prized possessions – Lego blocks. As mealtime approached, Simon dutifully packed his blocks into a shoebox and headed home. Next morning, reports came filtering through that some of his blocks were missing. While I wouldn’t say I was the accused, my mother’s voice left no doubt that ‘culprit’ was not a word, needless to say a person, she would stand for in her home. I can’t remember stealing anything, but this particular day, tired of bowing to disciplinary forces, I jacked up. At eight years of age, with the temerity of innocence, and much to my own surprise, I spat out the words, ‘I didn’t steal his bloody blocks.’

Within seconds I was standing over the laundry sink, braced in a headlock, having a cake of Velvet soap rubbed and scrubbed in my teeth – chunks almost choking me.

‘Just remember,’ my mother intoned, ‘this was for swearing, not for stealing.’

Mum’s eighty-ninth birthday lunch is the perfect place to reminisce. But today, neither Mum nor Aunty Lee are able to tell any of the classic family tales. Their memories are too depleted. Memory loss has robbed them of the ability to recall a sequence of fine details.

‘I can’t even remember what I did yesterday,’ says Aunty Lee in good humour, now resigned to the constraints she must endure, and equally miffed by them. Miffed because, an avid reader, she can’t recall what she’s just read in the previous chapter. However, Mum and Aunty Lee laugh vigorously when a couple of the old neighbourly tales are told.

Both of these women are determined. Both are still living independently. And I’m not sure if they’re aware of it, but in a planned trial concocted by Aunty Lee’s son, Simon, and me, both will be in respite together at the end of the month.

A present

Joy can come in many shapes, sizes and moulds. This morning it arrives in an oblong shape, coloured white and black, made of durable plastic, and takes the form of a clock that shows, in sturdy lettering, the day, the date and the month, as well as the time. After months of searching, and putting up with inferior versions which had so much information on them Mum got confused, I finally procured one – not from a store, but from a colleague at work. Her mother has been moved into high care, and can no longer use it.

Now Mum will know not only the date, but what day of the week it is. Now, perhaps, she will be able to better follow the instructions and appointments written on her kitchen calendar. When I take over the new clock, she is thrilled. Mum’s memory may be faltering, but she can still recognise something worthwhile.

CHAPTER TEN

Handball

June, 2010 Mum was born into a family steeped in the Aussie Rules football tradition. It included her uncle, William Kelly, who played for Fitzroy, and her cousin, topranking Carlton player Joe Kelly, who went on to coach Footscray and South Melbourne. As a youngster, going to the football each Saturday with her father and older siblings was a Jean Kelly rite of passage.

‘We used to sit on the boundary right up against the fence,’ Mum recounts with delight.

And I can just imagine them: barracking passionately, jumping out of their seats, screaming; that pulsating sense of being a part of something so much bigger than yourself.

When Aunty Marie, Mum’s older sister, recounted family history it was often so entwined with football that we dared not attempt a separation. No surprise then that football parlance is a natural part of our family’s speech and storytelling. Just by listening I learnt that art.

For example, today begins with a ‘handball’ – a form of disposal which, historically speaking, was used as a last resort for getting out of trouble.

My partner is having a medical procedure which requires a general anaesthetic. Afterwards he will require care. And Mum has an annual check-up, which the local clinic kindly reminded us about. Today, however, my partner is my priority. Therefore I must handball responsibility for getting my mother to her medical appointment.

On the end of the bench in my mother’s kitchen there’s a feint-lined exercise book which now serves as a communications book. Most people who visit – like the district nurse or the church pastoral worker – or anyone who takes her out, are now accustomed to jotting down notes. (And sometimes Mum writes who she’s going out with.)

The communications book serves several purposes. First, it reminds my mother of recent events. Second, any things to be done, appointments to be made, or comments to be noted, are listed for Mum’s perusal, and for mine. Third, I can write a message about something – for example, a change of schedule – that those who visit need to be aware of. Fourth, if Mum’s not home, I know who’s taken her out, and where she is. Fifth, I can note if anything is lost – like Mum’s wedding ring – and ask if anyone has seen it. It’s a very simple system, and so far it’s going well.

The morning after my partner’s medical procedure, however, it’s not handwritten notes but a wad of A4 typed pages in the communications book which beckons my attention. It’s my mother’s annual health assessment, signed by her doctor. Denise, who accompanied Mum to the appointment yesterday, has clipped a note to the document which reads: ‘Michele, please give these forms to an ambulance officer in case of an emergency.’ In it are patient details: name and address, social history, family history, and a medical history, from allergies and gastrointestinal conditions to cardiovascular and respiratory findings. It also lists the name and strength of medications my mother is on.

In the fine print, however, under suggested changes on page three, is a note to reduce one of my mother’s medications to half. That comment is noted again on the last page of the document, page nine. However, there’s no note to me; no letter or phone call to tell me to alter my mother’s medication pack. And I’m wondering why not. What if I hadn’t read the fine print?

Another week passes and there’s another appointment with Mum’s GP. Today he writes out a prescription for Mum’s medication. However, this is not the end of the consultation.

I hand him the list of all the incorrect information on the annual health assessment, completed one week ago at his clinic. First, Mum does not live with her daughter part-time. She lives independently. Second, under medical support, it fails to list that my mother attended the memory clinic in February and June this year. Third, Mum often has problems sleeping, which is why she’s prone to wandering in the middle of the night, making her way to the kitchen to pour herself a mixture of brandy and hot water. Fourth, my mother does not eat three meals a day. Her idea of breakfast these days is a freshly squeezed orange juice with bran in it. Fifth, her weight is not stable. She has lost a significant amount of weight over the last six to twelve months. (Even the memory clinic staff, who only see her every few months, have commented on her weight loss.)

Yes, I understand the nurse took the information. Yes, the doctor is aware Jean has been to the memory clinic. However, what I’m struggling with is that under psychological assessment, it says my mother’s memory is ‘good’. How can that be when the memory clinic has just assessed my mother as requiring medication to stem – perhaps only temporarily – memory loss? Isn’t there the danger that if this document were used in the case of an emergency, it could give misleading information in a vital matter? And if the doctor knows the information is inaccurate, why did he sign off on it?

When the GP says he wondered why I didn’t attend the appointment for my mother’s annual health assessment, I point out that if a main carer is required, the protocol of most other medical establishments is to let the family or the carer know in advance. I would appreciate if his practice would do the same.

Another upshot of the annual checkup is that Mum now requires three other tests to be done, one of which will take a couple of hours. Hearing that, I could almost scream. Why does my mother need all these tests? Why does she need to be checked out by so many medical professionals? Wasn’t the hospital thorough enough? And why, for example, does Mum need a bone density test when she was on a bone density research program at the hospital? Aren’t there other priorities at the moment?

I never planned a life based in Melbourne looking after Mum. I lived an international life, working in human rights with refugees. At the moment I’m trying to recuperate from injury, which has changed my trajectory. While my partner could certainly cope with me coming and going, my mother can’t. She needs consistent care. Care and advocacy. And who else will provide that?

What’s more, pushing myself to drive Mum everywhere is taking a toll on my body. Driving seems to undo a lot of the good work that exercise creates. And the head space that caring consistently takes – not just the hands-on care but all the phone calls, developing strategies, and working out ways to deal with issues – is wearing. It would be so much better if there was a routine. But it all feels so ad hoc. And the one time I don’t take my mother to the doctor creates so many other complications that I may as well have taken her.

A question

Two days later, the daily phone call to Mum is later than usual. It’s between morning classes at work and I’ve already made three phone calls to the pharmacist about my mother’s new medication.

The geriatrician from the memory clinic has organised a prescription for the Alzheimer’s medication for my mother. I received it in the mail last night. The name of the drug is Aricept, and stamped on the prescription in red ink in a circle is the word ‘APPROVED’, in capital letters.

There was no note, just the prescription. Reading it felt like a major victory. The task now, however, is to get the medication made up so Mum can begin it on Friday. She could start taking the new medicine later, but the advantage of starting it immediately is that from this Sunday she’ll be in respite, and with a nurse in attendance, she’ll be monitored. (I will also request regular blood pressure tests while she’s there.) However, when I ring Mum’s pharmacist this morning to check that he can make up the medicine pack by Thursday, he asks me about the dosage.

‘Five milligrams for the first 28 days, then 10 milligrams after that.’

‘No, you can’t have different dosages on the governmentapproved prescriptions,’ he says in an authoritative tone.

‘What do we do?’ I ask, desperate to figure out a solution. (I’m being transferred at work to another campus at the end of the week, and have so much work to do that there is little chance of me taking time off to visit a pharmacist 12 kilometres away, just to show him the script. But when I hang up, that seems to be the only solution.)

I’m trying to figure out – between classes, meetings and a farewell dinner – how to solve this conundrum, when a close colleague who’s been privy to the conversation suggests I fax a copy of the script through.

‘What a brilliant idea!’ I exclaim, wondering why I couldn’t work that out myself.

Five minutes later, the pharmacist, fax in hand, says the change in dosage is fine because the prescription is a hospital one. Yes, he can make it up, so long as the original prescription is brought in when the medicine is collected. Problem solved. Back to class.

My mother didn’t answer the phone the first time I rang this morning, but she does by lunch time. The conversation is typical of my daily calls.

‘Hi, Mum, how are you?’

‘I’m good.’

‘Did Meals on Wheels come today?’

‘Yes.’

‘And Trish?’ (The woman from Mum’s church who brings Communion.)

‘Yes … No, she’s not coming today.’

I also tell Mum that the memory clinic is putting her on new medication to stabilise her memory, so it won’t drop very much. I’ll bring it over on Thursday night.

‘Michele, do you really think I have a problem with my memory?’ Mum is asking in a voice which seeks an honest answer.

‘Yes, Mum, I do.’

A pause follows, as if it’s difficult for her to absorb what I’m telling her.

‘A few people, family and friends, have talked to me about your memory; about how it’s not as sharp as it used to be.’

‘Really.’

I take Mum’s comment and subsequent pause as an invitation to explain.

‘Sometimes you tell me something, and then you tell me again a minute or two later. And then again, five minutes later. And remembering dates and times is tricky. Well, you’re eighty-nine. We have to expect that different parts of your body slow down a bit.’

‘You know, I don’t really notice it,’ my mother says.

Reflecting on that phone call, I realise that doctors might tell her she has a memory problem, but it seems, to be sure, my mother needs to hear it from her daughter.

It’s my last day at the campus where I’ve worked for the last three and a half years. The move to another campus is not voluntary. It’s the result of an institute contract not being renewed. The choice is simple: move or lose your job.

The consequences of the move that I focus on are not career- or work-oriented – they are about Mum. Moving to the new campus, 10 kilometres away, means I can no longer pop in to see my mother on the way to or from work. Another disquieting aspect of the transfer is that the exercises I do in the nearby swimming pool at lunchtime, which refresh my body and keep pain and muscle tension at bay, will stop. (There’s no pool easily accessible at the new campus.) Part of the care I give, and the support I need, are no longer possible, certainly not in the way they have been. And because of this, a sense of foreboding has found a firm hold in my mind.

Please

Late June, 2010 Trying to get Mum to respite this morning is like pushing a big round rock up a hill.

Two days ago, when I visited my mother, she was lying in bed exhausted. ‘It’s just a bit of diverticulitis,’ she said; it’s a condition which regularly robs her of energy.

Depleted, she dutifully drank the oral rehydration mixture I handed her, and nibbled on her favourite dry biscuits before resuming the prone position.

‘I’ll be fine,’ she said, in a croaky voice with a tone that indicated she just wanted to rest.

When I returned the following day, she was weak, but improved.

This morning, however, she still is not well. She cannot concentrate on one thing, so selecting clothes to get dressed in, finding where she has put her shirt, having breakfast, putting on her make-up and adding last-minute things to her suitcase becomes a lengthy, scrambled scenario.

Keeping my mother focused on one task is a challenge. When I insist she sit down to eat and say I’ll get all her clothes, she wants to stand up to do her make-up. When I bring a piece of clothing for her to wear, it’s not the one she wants.

There had been a plan for the morning. It was, as I remind Mum several times, for us to be ready to leave her home by 10 am, when the painter was scheduled to arrive. He’s supposed to be painting the hallway and the spare room. The painter has indeed arrived; however, he can’t begin putting covers over my mother’s carpeted floors – first step in the painting process – because this would only create an obstacle for my mother to trip on. Aware of this, he waits.

When we finally get to respite, it is well after 11 am, and the nursing staff are advised that my mother is not well.

‘She hasn’t got gastro, has she?’

‘No, it’s one of her bouts of diverticulitis.’

The cook, who happens to be in the nursing administration office, pipes up in a voice that modulates as if in song: ‘Sorry, but she can’t stay if she has it. We’d have to send her home.’

‘That’s lovely,’ I think to myself, as the nursing staff ask more questions. My mouth may be articulating words, but in the back of my mind I’m picturing my partner, who’s currently driving to South Australia, the car packed with all our gear for our week-long break. Not being privy to this respite discussion, there is no doubt in his mind that I will fly over and meet him in Port Augusta tomorrow evening.

Of this I am sure: my mother does not have gastro. However, attempts to reassure staff fail to get the affirmative response I require. Dissolving into tears might be appropriate, but tears will not serve any purpose. Not in this situation. It is my mind and my mouth which must launch into persuasive overdrive.

Searching the faces of the two staff who will make the decision, I finally spot a glimmer of possibility. Hopeful – perhaps ‘desperate’ would be more accurate – I describe the regular symptoms my mother has that I doubt are contagious to anyone around her. Yes, I understand the elderly are more susceptible, and staff must consider the other residents. But I’m sure it’s not gastro. Finally, my mother is permitted to stay. It is with great relief that I leave respite – alone.

A discovery

As personal discoveries go, this one is not insignificant. And it’s not about the Australian outback where I’ve just been. It’s about respite.

Respite is not for my mother. It’s for me. And how grateful I am for it. Before Mum went into respite I felt so exhausted, so emotionally raw. Now, having been in the wide open spaces of outback Australia, having hiked over hills and mountains, having experienced the ephemeral Lake Eyre, its vastness and voids, its creatures and characters, there’s a feeling of replenishment, of life being expansive, energetic, even exciting.

Being a carer is not unlike being an interpreter. The interpreter experiences a giving way, a letting go, of self. As such, the interpreter exists only to serve others. The task is to listen intently, to catch not only the words but the spirit of the message that is being given, and then to immediately pass that on. So, too, the carer, who is required to listen, to catch the spirit of what is needed, and then to set about getting those needs met.

CHAPTER ELEVEN

Do I have to do anything?

Early July, 2010 ‘Do I have to do anything?’ I inquire reluctantly.

The nurse from respite has rung to chronicle my mother’s medical history over the last week while I was away. Her response that she’s only ringing to keep me informed – without any demands – seems positively luxurious. It’s my first day at a new campus tomorrow, and the idea of Mum staying in respite another nine days to give me time to settle in and focus on my work is most attractive.

This evening my mother looks old, gaunt and tired, the clusters of lines and wrinkles that characterise her face accentuated. The respite nurse was correct. Mum is not her usual self.

‘Michele, it’s good to see you. I didn’t think you were back ’til next week,’ she says, attempting to turn down the volume on the TV in the corner of her room.

When I inquire if Aunty Lee is in respite, my mother confirms it, saying, ‘We’ve spent most of the day together.’ Then adds, ‘We should visit her.’

That’s an idea I’m delighted with. Aunty Lee has always been special to me. Warmth and motherly instincts aside, she introduced me to aspects of life my mother couldn’t: a love of reading and a passion for politics. She even took me to my first political rally when I was only seventeen years old. However, in more recent times Aunty Lee has one other distinction.

It was her idea to matchmake me – four years ago – with a close friend of her sons. Not that I was aware of it. Nor was the fellow in question. (Had either of us known we might not have accepted the invitation to attend Aunty Lee’s oldest son’s fiftieth birthday celebration.) Ignorance, however, can have its blessings. Not only did we meet, but we’ve been together ever since.

My mother heads off down the long corridor, turning left, then left again and again before turning right. She sets a remarkably sprightly pace, touching handrails along the way to check her balance. Our journey does not follow the most direct route, but when we reach our destination Aunty Lee opens the door in her nighty. She’s been reading in bed and is thrilled by her surprise visitors. I’m soon enveloped in a squeeze-the-breath-out-of-you hug. The visit may be short, but Aunty Lee is most appreciative.

Two days later, when I arrive at Lovely Gardens, Mum is seated in the news room, an area with tables and chairs where residents can read the newspaper, and – should they be capable and have the inclination – use the computer.

‘Oh, Michele, you’re here. We’ve been out for lunch to the RSL,’ says Mum with an I’m-on-top-of-the-world attitude, as she swings around to introduce me to three of the residents seated at the table. And just in case they’re not sure who I am, she repeats the introductions several minutes later.

‘Yes, we know who she is,’ one woman replies, in an attempt to ward off further repetition.

I cannot help thinking that the party girl is back. What a change from only two nights ago. Has the medication kicked in already? I drop off the blanket my mother requested – the colourful crocheted blanket she’s been using is not as warm as she’d like – then leave. Mum is happy, and not just because of my visit. Pre-dinner drinks are about to be served.

It’s nice enough but …

Lovely Gardens and the swimming pool I frequent are within a couple of blocks of each other, so it’s easy to visit Mum. Today she’s not quite as sparkly as she was last night, but even so she displays more zest than she did three nights ago.

This evening I visit Aunty Lee, who is far more introverted than my mother. At home, she’s happy to sit and read, her trusty dog by her feet. She’s also in grief. Her husband died only two years ago. I imagine that being at home keeps the spirit of her husband alive: the photos, the lounge chairs they sat beside each other in, even the wooden doorstop he handcarved. Respite, on the other hand, removes her from all that is so familiar, all that stands as a testimony to the people she loves – present and past tense – and who love her.

‘It’s nice enough here,’ she confides, ‘But it’s an institution. I think I’ll go home tomorrow.’

Hearing that, I can’t help wondering if her family is privy to this information.

Respite may not feel so good to Aunty Lee, but fortunately for Mum it certainly does. Winter at home on her own can be so bleak. But here, there’s loads of social interaction; the friendly staff always chat and joke with her and enjoy her company; and then there’s the delicious meals. Besides, it’s only short-term.

Ring Simon

It’s a big day. Hawthorn, my football team, is playing Geelong: hope versus success. And I’m backing hope. Not just backing them, but sitting fifteen rows from the fence at the MCG, trying to will and scream my team on to victory. One of the people I sit with during this epic is Aunty Lee’s son, Simon.

Today, however, there’s no time to talk about mothers, respite or care. This match demands total immersion. In one of the greatest matches I’ve ever seen, I’m witness to hope falling two points short of success. I leave the stadium proud, passionate and slightly disappointed. However, I’m not the only one to harbour disappointment.

When I arrive at Lovely Gardens wearing my brown and gold team scarf, Mum’s still finishing her dinner, so I sit in the lounge and chat to Aunty Lee, who has failed to fulfill her threat to return home. It becomes apparent she’s frustrated because she believes her children don’t come to visit her.

‘Yes, they do. Your eldest son brought you over here, and Simon visited you last weekend.’

‘I can’t remember,’ sighs Aunty Lee. ‘My memory isn’t good. I can’t remember what I did yesterday.’

On the way home I make a note to ring Simon. I also lament this memory loss, and how isolating it can be. Frustratingly so.

Going home

Just before midday, I receive a surprise phone call from the manager at Lovely Gardens.

‘Is your mum going home today or Saturday?’

‘Today,’ I reply.

‘Your mother told me that she’s going home Saturday, and that she’s going to the memory clinic today. I thought I’d check.’

‘She’s definitely going home today.’

Aware that lunch is served in respite at noon and that I need Mum ready to leave by 12.30 pm as we have a Royal District Nurse assessment at home at 2 pm, I ask the manager to remind Mum to pack by lunchtime.

Then, just before I’m about to collect my mother, there’s a phone call from the district nurse. Can we change the appointment time? Yes, sure, anytime later would be fine. No, she’s ringing at 12.30 pm to try to make a 2 pm appointment earlier! I promise to try, but cannot offer any guarantees – unless it’s a guarantee to swear.

When I arrive at respite and see my mother waiting at the sliding glass doors with only her handbag, the realisation that she’s not ready almost causes me to hyperventilate. What follows is a chaotic few minutes in which an assistant helps us get all of Mum’s accumulated gear – touch lamp, dressing gown, shoes, clothes, toiletries and blanket – into the car. I must also get the rest of her medicine from the nurse, who’s tied up in a conversation with someone else. Racing like this puts pressure on my mother that she doesn’t handle well.

‘I’ll need a bit of brandy in warm water,’ says my passenger, whose increased heart rate is slowly returning to normal as I drive her home.

Today, for some reason, there was a sense of chaos that seemed to slather the day. And I’m not sure why, because I made a booking in writing with respite so they had the departure date. What’s more, on Sunday night I sent respite an email asking them to make sure Mum didn’t go on an excursion to a restaurant in the hills on Wednesday as I’d pick her up straight after lunch. And yesterday I rang the Royal District Nursing Service to make sure they had the doctor’s referral, and to check the assessment time. As I hadn’t heard otherwise, I assumed all was okay. Now, I just pray that Meals on Wheels come tomorrow.

CHAPTER TWELVE

An agreement

Mid July, 2010 It’s a cold, bleak, wintery day. The tall trees which line the fence in my backyard are now bare, which should allow the softened afternoon winter sun to shine right into my kitchen. However, for the last few days the sun has refused to appear. Because of this, nestling inside by the heater is preferred to bracing against the elements. Day after day of bleak, overcast weather can be depressing. It’s not the kind of weather that brings out the best in Mum or me. We are summer women: enticed outside by sunshine, warmth, gardens and company.

This evening, however, I must go out. I’ve promised to take my mother her favourite Chinese meal – sweet and sour chicken, and spring rolls. When I arrive, she has the table set with placemats, bowls and cutlery, and the bar is open. Sweet and sour and spring rolls aside, she’s keen for a brandy.

Four days later, Mum tells me over the phone that she has so much food she rang Meals on Wheels and cancelled for today. They’ll come tomorrow instead. I’m a little surprised that she’s taken this initiative, since I usually do the Meals on Wheels bookings. However, I’m also impressed with her logistical skills. (Perhaps the new medicine is working in unexpected ways.)

Later, at Mum’s, I inspect the fridge. There’s a lot of food but on close inspection most of it is from last week. (The Meals on Wheels food has a clearly printed use-by date.) And one piece of gourmet pie has specks of mould on it. I throw them all out. No problem with that – Mum has enough for tonight, and she has organised food for tomorrow.

The message from the co-coordinator at Meals on Wheels the next day is urgent. Apparently Jean has rung this morning saying there is nothing in her fridge and she certainly needs something to eat today. (She seems to have forgotten about the meals in the freezer.) What’s more, she’s told the woman at Meals on Wheels that she needs a meal delivered every day. (This can’t be right. Mum’s been telling me she wants to try some other food a couple of days a week which my brother suggested.) Has she forgotten this too?

It becomes clear that things are not quite as orderly as I’d thought. Or hoped. We make an agreement. If Mum wants to change any aspect of the service she’s to ring me first. The Meals on Wheels co-ordinator seems pleased. I just hope we can both stick to our side of the agreement.

A free day

Late July, 2010 My life has changed dramatically. I know because today is what I consider a free day. No appointment with Mum, no appointments with doctors, community centres, respite or assessors. No paid work either. And what do I do? Catch the train and the tram to Alzheimer’s Australia in Hawthorn, which, by my calculations, is only three tram stops away from where my mother grew up.

I know the building where Mum lived – the residence at the back of a shop – because one of my cousins owns it and used to run a business from there. One day when I was inside, I tried to figure out which window my mother must have crept out of to meet up with the American sailors during World War II. Later, when I spoke to her about it, she confirmed my conclusion.

Looking out the tram window, I wonder if anyone else in Mum’s family has had dementia in general, or Alzheimer’s in particular. I can’t recall any, but being the last of my generation in the family I might have to speak to one or two of my older cousins to be sure.

Visiting Alzheimer’s Australia would not have been within the scope of possibilities in my life just over a year ago. Back then, I didn’t even know how to spell Alzheimer’s. Now, however, I can spell it, have a mother living with it, and I’m trying to make sense of it. That’s why I’m visiting their library. By the end of the afternoon it seems Alzheimer’s will also be the theme of my reading material over the next few weeks. Two of the five titles tucked under my arm are Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir and Who Can Decide: The Six Step Capacity Assessment Process.

It crosses my mind that the day didn’t turn out quite as free as I’d anticipated, but it felt relaxed. There was one phone call from the district nurse informing me she had terminated the service to my mother, and another phone call from the coordinator at Meals on Wheels. She was concerned that Mum can’t always hear the doorbell. After some discussion, a solution is found: install another doorbell that rings up the far end of the house.

The grab rail

Early August, 2010 Last night I wrote my to-do list for Mum’s affairs so I could start on it first thing this morning. It read: buy a new doorbell; get council maintenance to install it; change Meals on Wheels next week to only two meals; take Mum to lunch, then to the doctor.

At 8.30 am, I ring the fellow in charge of the maintenance team at the local council.

‘We’re already going to your mother’s today, at lunchtime.’

‘Are you? What for?’ I respond, a little confused since Mum and I are supposed to be having lunch together.

‘To install a grab rail in the shower.’

‘Oh,’ is all I say. I started organising this back in January so it comes as a surprise that it’s finally being done. I do recall a letter about it a month or so ago.

‘What colour grab rail would you like?’

‘Do you have any gold ones?’

‘No gold. We’ve got silver or cream.’

‘Cream sounds good. Just check with Mum. She’s good with colours.’

I’m also told that if I can buy a new doorbell and get it over to Mum’s by midday they’ll install it today. That’s an offer I’d like to accept, but I’m waiting on a fellow to fix the roof at my place so it depends what time he turns up.

At 10.45 am I ring Mum to remind her about the doctor’s appointment later today, and to speak to her about the fellow from the council coming to install a grab rail in the shower.

‘He’s not coming today. I cancelled him,’ she responds.

(I’m beginning to wonder if she has a new theme song called ‘I Cancelled That Today’.)

‘When?’

‘I’m not sure.’

‘Why?’

‘Because I didn’t want him to come today …’

I guess that means she prefers to accept my offer to take her out to lunch. My heightening frustration means I miss the fine details of what she’s saying.

‘Mum, we need that appointment with the council fellow. It’s taken since January to get the grab rail.’

Pause.

‘No, hang on a minute,’ says Mum. ‘He’s coming on Friday the sixth, I think … Let me check the calendar.’

The subsequent pause takes minutes.

‘I can’t find the note.’

‘Mum, leave it to me. I’ll ring the council and double-check.’

There are no human beings available to talk to at the council maintenance department, so I leave a message. ‘Michele Gierck here. If Jean Gierck happens to have rung you this morning to cancel the appointment, please disregard the message. Your services are required and she’ll be at home.’

At 10.50 am I ring my mother again.

‘I know,’ she says, in an I’ve-got-it-all-under-control tone. ‘He’s coming next Wednesday to clean.’

‘Mum, I’m not talking about the cleaner. I mean the fellow from the council to put in the grab rail in the bathroom … Best not to go out for lunch today. Just wait at home and I’ll pick you up at 2.30 to go to the doctor.’

I can’t help thinking that today has all the makings of another adventure with another unknown destination. And it’s not even 11 am.

Write it down

I’ve had the last two days off work. I had to. My body refused to get out of bed. It seems that no amount of cajoling by my head could entice my body to move. So I didn’t. However, this morning I’m feeling guilty. With time on my hands, perhaps I should visit Mum. Or perhaps I should just curl up under the bedcovers.

It’s 8.45 am when I ring Mum from the phone beside my bed and discover that Trish, the woman from the parish church who brings her Communion each week, is taking her to Mass with all the primary school kids, followed by a luncheon for the parents. Mum is thrilled. So am I. By my reckoning, I’m free.

I can’t help thinking what a great initiative it was asking the parish priest from Mum’s church to visit his faithful parishioner. Since then we’ve had Trish bringing her Communion each week, and another woman who lives around the corner pops in twice a week to see if anything is required. Not only are they delightful people, they’re trustworthy and share a deeply meaningful part of what’s important to my mother – her faith.

When I ring Mum later, she’s in fine spirits.

‘I had such a good day,’ she says, and then goes on to impersonate the priest, who always jokes and laughs with her. He’s such an animated character, he mesmerizes my mother.

When I brief Mum about tomorrow’s schedule, I suggest she write down that she is to be ready by 10 am. ‘Are you writing this down?’ I inquire.

‘No. Do you think I’ll forget?’ she replies, in a tone which assures me that will not be the case.

‘Best to write it down, as we have other things to discuss.’

The subsequent chat rolls along. Then, just before I hang up, Mum asks, ‘What time do I have to be ready tomorrow?’

Hmmm. I wonder if it’s written down. I’ll make a reminder call in the morning.

How am I going to get there?

I’m hoping the 8.45 am phone call I made to my mother, reminding her to be ready to leave the house by 10 am this morning, will be effective. When I arrive, however, although she has the central heating on, she’s standing by the kitchen heater, naked, warming her clothes, about to get dressed.

Estimating the amount of time dressing takes Mum, then adding extra time for applying make-up and tooth-brushing, I reckon we’ll be lucky to leave by 10.30 am, the precise time of our appointment at the council-run centre.

As if reading my thoughts, and anticipating how she’ll be urged along, my mother lets me know she’s been a bit off in the stomach this morning, and this is as quick as she can go. So back off.

‘Fine, take your time,’ I say, hoping she’ll go faster with encouragement than with berating.

When we leave the house at 10.20 am, mother and daughter are well pleased.

Soon after, we’re seated in the bright yellow office of a community worker who’s about to assess Mum for a day activity class for people with Alzheimer’s. Once again I can feel the cloud of bureaucracy envelop us: questions to be answered, forms to be filled in and signed, and an additional form to be completed by a doctor. Outside, a group of elderly citizens are sitting around a large table, enjoying morning tea. Their laughter pervades.

I close the door so Mum has a better chance of hearing the questions she’s being asked. This morning she’s looking a little ragged. The sun spots that were burned off her face and hands last Wednesday are dry and scabby. What’s more, the only make-up she’s applied is drawing on her eyebrows. (There simply wasn’t the time for eye shadow and lipstick.) Still, she’s able to impress the intake officer with how highfunctioning she is.

The aim of today, from our point of view, is to get my mother into a suitable day activity, preferably one with exercises. However, the intake officer seems more intent on briefing us about overnight respite. We listen, and then get back to information about the day activities. The Wednesday group sounds excellent: morning tea followed by an exercise class, then lunch and some afternoon activity. My mother, however, has a question.

‘How am I going to get here?’

I would have thought if the council had gone to all the trouble to build a lovely community centre for people with Alzheimer’s, they would have had a community bus to pick them up. But no, it seems we’re expected to have a driver at the ready, or organise a taxi. The latter is difficult because Mum keeps saying that she has had a bad experience in a taxi and has not been in one since, not on her own. Furthermore, she’s unable to handle money effectively these days, so ensuring she has about the right amount adds another worrisome dimension to the day.

A discussion of options ensues. My mother and I cross each one off as it is mentioned. Finally, the intake woman steps outside to discuss the problem with a colleague. When she returns it is agreed that a worker will collect Jean and drop her home.

‘It’s just for the first month, and then we’ll see,’ I’m told.

‘We’ll see,’ I say to myself.

Appointment over, I drive Mum to our favourite café for lunch.

We chat about where we’ve just been. My mother likes the centre. She also enjoyed seeing the exercise class that was in full swing. It appears she’s been thinking about things, mulling them over in her mind. And so have I.

‘We probably won’t need to use overnight respite, but it’s good to know about it; to have it as a backup,’ I say.

‘I’m really lucky to have someone who cares about me, who wants to take me around and find things out,’ says Mum.

‘Hmmm. Well, you are. When I get older, who’s going to look after me?’

It is a reference to my lack of progeny. Ever the optimist, my mother assures me that something will fall into place. Yes, I think to myself; it’s called an old people’s home.

A freezing cold winter’s morning

It’s a freezing cold winter’s morning; the southerly is carrying a mighty chill all the way from Antarctica. I’m driving over to my mother’s house, most concerned that she hasn’t answered any of the three phone calls I made to her this morning. A feeling of anxiousness invades my being.

When I arrive, Mum is standing outside near the front door, the summer jacket draped over her shoulders failing to insulate her from the biting wintry conditions.

‘Why are you standing here?’

‘I’m waiting for someone from the council to pick me up.’

Two questions spontaneously arise in my brain. 1) Why are you waiting outside, instead of inside in the warmth of your house? 2) Don’t you remember you said yesterday afternoon when I spoke to you that you didn’t feel well and asked me to cancel your activity for the day? I ask the first, and point out the second as a statement.

My mother’s response is that she read the note on the fridge this morning, the one I put up days ago. The note says clearly: Wednesday 18 August, be ready at 9.30 am. You will be picked up by a driver to take you to Day Activities. As soon as I glance at the note, I understand why Mum was waiting. However, it’s only once we’re back inside the house, the heating turned on and a cup of tea made, that I ask why she’s wearing a summer jacket.

‘I couldn’t find a winter one,’ she says.

I delve into the hall cupboard, pull out a lovely camel-coloured winter coat and present it to her.

‘Oh, I forgot about that,’ she replies, thrilled to have discovered such a stylish piece of attire.

As to why my mother was waiting outside the house, she explains that sometimes she doesn’t hear the doorbell, and she didn’t want to miss out. All I can do is reiterate that a second doorbell has now been installed so she can hear it all over the house.

Four hours later, we’re visiting Mum’s doctor. There are forms to be filled out, all needing a medical practiti- oner’s signature, and my mother needs a check-up. She’s not feeling well and has had more bouts of what she refers to as diverticulitis. The doctor prods her stomach and, finding no detectable painful spots, types a note on his computer, then sends us off. I do hope my comment that Mum seems to have too many bouts of this debilitating condition has also been noted.

Voting

The federal election campaign which has been running for over a month has been endured by all and found tiresome by most. Now, only two days remain until election day, on Saturday, 21 August.

‘Mum,’ I ask, ‘would you like to vote?’

‘I certainly do,’ she responds with enthusiasm. ‘I can’t stand that Tony Abbott.’

When my brother and I were growing up, Mum never told us who she voted for. It was part of a wider strategy of fostering independent thought. In retrospect, it would have been easy enough to figure out. But as a child I was not aware of being working-class. Now, however, with only the slightest mention of the election, my mother will rant and moan about Tony Abbott, as if doing so is part of her civic duty.

CHAPTER THIRTEEN

I need to go to hospital

August, 2010 Mum felt well enough to vote last Saturday, but today, three days later, her steps are doddering, and her pink dressing gown hangs off her diminishing frame as she drags herself along the carpeted hallway to the kitchen.

I haven’t seen her for four days, just prior to a medical procedure which took more of a toll on my being than I had anticipated. Rest was therefore imposed upon me. And rest is exactly what my mother says she needs, even though she’s been in bed since Saturday afternoon. I spend most of the day plying her with cups of tea, little snacks and medicine. Evening is well advanced by the time I leave, and my mother is sleeping soundly.

By the following morning, Mum has deteriorated. She can no longer walk to the kitchen and she’s extremely unstable. The house call by a locum doctor does little to relieve her worsening condition. His assessment that she just needs to eat after each bout of diarrhoea does little to assist or to instill confidence. My mother can no longer be alone.

Accordingly, I stay the night. However, each time Mum wishes to go to the bathroom, I must swing my whole body weight behind her to keep her upright and thereby reduce the risk of a fall. At 3 am, she is unsettled and requests Valium, and brandy mixed with a little hot water. While I doubt it would gain medical approval, this is a cocktail my mother has long sought refuge in. And in the hope of her getting a few hours’ rest, I oblige.

The first phone call in the morning is frustrating. My mother’s usual doctor is not in, and the other GP can’t make a home visit because her car has broken down. My offer to come and pick her up is refused as she says my mother needs to come to the clinic to have some blood tests. And I can’t get my mother there. She’s too debilitated.

Of this I’m sure: my mother is deteriorating and I can now barely manage her. It’s in light of this that I ring the ambulance service and speak to a paramedic.

‘You’ve done the right thing. You’ve spoken to your local doctor and had the locum visit,’ says the paramedic after asking a series of questions.

‘I don’t think Mum’s a super-emergency, but it would be good to get her to the hospital soon.’

The paramedic agrees.

Within an hour the ambulance arrives. The local hospital is on pre-bypass, but since my mother has a history there, they agree to take her. That’s a relief, because the medical team who look after her will have access to all her medical notes, including recent operations, tests and procedures.

Once she is in the Emergency Department, Mum has a room of her own. Hooked up to monitoring machines, this veteran of the public health system is in familiar surrounds. And she’s not the only one. I bring along my favourite book, To Kill A Mockingbird, and my back rest, in anticipation of a lengthy stay.

It doesn’t take medical staff long to realise Jean is suffering from heart medication toxicity, and her oxygen levels aren’t stable. A young doctor who’s studied Mum’s extensive file comes into the room to ask her a few questions. He’s read the Alzheimer’s diagnosis and says Jean has deteriorated very fast over the last few months. This, he believes, is cause for investigation. He advises that a family meeting may be called, and hints that Mum might not be able to return home. At that point I suggest we chat outside the room, as my mother doesn’t need any further stress. The thought of leaving her home would not aid any recovery.

The difficulty with the Emergency Department is this: it’s hard to know if Mum will be sent home later today, transferred to a ward, or will remain where she is overnight. It’s not until late evening that the decision is made – Jean will stay in the hospital and be transferred to a ward as soon as a bed becomes available. Thirty minutes later I’m at home, asleep. It is a deep, deep, I’m-knocked-out, don’t-you-dare-wake-me sleep.

‘I think I need to go to hospital,’ says the pale, drawn, confused patient my mother has become.

‘But you are at hospital, Mum. You came here yesterday by ambulance.’

‘Oh,’ she replies with a little laugh.

I’m duly advised by nursing staff that Jean’s condition is not stable and therefore she’ll remain in the cardiac ward for a few days. Hopefully when she’s stable she’ll be less confused.

Almost as soon as Mum is admitted as a public patient, plans for her discharge begin. Suspecting my mother will need respite immediately after leaving hospital, I speak to the social worker. His suggestion that returning home alone is not a given is not surprising.

Broaching the subject of respite or rehabilitation requires delicacy. Encouragement rather than commands. When the subject of not returning home is mooted – I don’t mention forever, just for now – it becomes apparent that Mum has been doing some thinking of her own. She wants to return to Lovely Gardens, which is understandable enough. It’s familiar territory.

However, I must break the unfortunate news.

‘Lovely Gardens doesn’t have any spare beds at the moment.’

At that news, my mother glares at me as if suggesting anywhere else would be absurd, then replies, ‘Michele, just pull a few strings.’

Perhaps it was the events of the past week that motivated me, or the fact that Hawthorn, my football team, was playing arch rivals Collingwood, but today at the Hawks versus the Magpies match at the MCG, I scream and hurl myself around with such passion, adrenalin pumping through my body, that when the final siren goes and we win, tears fill my eyes.

Meanwhile in the hospital, Mum is sitting by her bed watching the delayed telecast of the match, turning it off when it gets too exciting, for fear of requiring additional coronary care.

Waltzing into the ward, swinging my gold and brown scarf, I capture the attention of the only two residents in the room. Then I burst into song, ‘We’re a happy team at Hawthorn.’

‘We won?’ asks my mother, accurately interpreting her daughter’s behaviour.

It is only then that I look up at the TV screen and realise the match has a few minutes to go on the delayed telecast. So we watch the final minutes together. Afterwards, I re-enact some of the plays of the day. And reliving them only serves to inspire more elation.

Mum is thrilled. I always ring her after winning matches, breaking into a toneless rendition of the club song. Being in hospital shouldn’t deprive her of that.

A thought

The following day, the last Sunday in August, my partner and I visit Mum. She looks weak. Exceedingly so. And the thought crosses my mind that she may well be on the losing end of a major battle for survival.

Next morning, however, my mother is moved to a general ward. I’ve been told over the phone that medically my mother is okay to leave the hospital, but not socially. (I’m not sure how to interpret this information.)

By the time I arrive at the hospital on Monday afternoon, Mum is most distressed. She’s unable to get out of bed, and remains reliant on her oxygen mask. My mother is a tough character, but something has the better of her, something which the medical staff seem unaware of.

‘What is this?’ I ask myself, so frustrated, as I leave my mother’s bedside. Something is obviously wrong with Mum and it seems only I can see it.

By late Tuesday morning, a lot of medical staff have seen Jean. That’s what I’m told when I ring to check on her condition. By the time I arrive at the hospital, after leaving work early, my mother is being wheeled out to have further tests. Meanwhile, I speak to the head nurse, who arranges for me to speak to a doctor who knows my mother’s file. After the tests, Mum is returned to the cardiac ward. She is no longer medically stable, and the medical team is trying to find out why.

CHAPTER FOURTEEN

The moment

Early September, 2010 The voice on the other end of the phone is clinical yet apologetic.

‘Has anyone from the ward rung you yet?’

‘No.’

‘Your mother had a fall this morning in the bathroom and split her head open. It’s quite deep and it had to be stitched,’ says the day shift nurse from the hospital.

It’s the moment anyone with an aged parent dreads – the fall. In non-professional medical parlance, it’s interpreted as the beginning of the end.

All the questions I want to ask seem to crash into each other inside my brain. ‘When? How?’ are the only words I manage to articulate. It’s now after midday and the incident happened almost five hours ago. ‘Why did you wait so long to tell me?’

The nurse attempts to assure me that my mother is okay; that scans reveal she has not fractured her skull. But how could such a serious fall not have consequences? What about the shock and the pain?

Fortunately, it’s Wednesday, a day I work from home, so I don’t have to extricate myself from classes.

‘I’ll be there in fifteen minutes,’ I respond anxiously.

Head wrapped in a bandage which refuses to stay in place, dried blood stuck to her hair, the 89-year-old patient is very glad to see her daughter.

‘I had a bit of a fall,’ she says in an understated way.

‘Yes, twelve stitches in your head. It must have been a bit of a fall.’

The following day, my three visits to the hospital confirm that it is not only Mum’s head which has suffered a blow; so too her back. As the waves of pain are relentless, we ask for painkillers strong enough to induce relief.

Guilt is the one remnant of a Catholic upbringing my partner has salvaged. Thirteen years of Catholic education failed to etch Catholic catechetic principles into his brain, but a sense of guilt is as central to his make-up as are gills to a fish. And he’s not alone.

Guilt for a carer, at times, stifles self-preservation. It casts shadows over the deeply felt need for time away, time out, time anywhere but in a carer’s role. That’s how I was feeling, laden with guilt, when I spoke to my mother.

‘Mum, it’s Friday today. I won’t see you tomorrow, Saturday, but I’ll be in on Sunday.’

I’m a guest speaker at a book fair about three hours from Melbourne. It seems futile to speak to my mother about my deliberations – to go or not to go. I know what she’d say: ‘You go for it.’ She has often said that to me.

My partner agrees with this go-for-it mentality, particularly in this instance. Knowing my brother is away, and that no-one else is likely to visit Mum this Saturday, I agree, albeit reluctantly. But that agreement is laced with a thick, dark thread of guilt. And that thread is prone to knot.

Come Sunday, feeling refreshed and reinvigorated, my partner and I return from our weekend away. Mum, however, has deteriorated. Lying in bed, exhausted, she is barely able to open her eyes. It takes a while before she actually says anything. Perhaps because I’ve witnessed so many of my mother’s recoveries, I’m surprised she’s not looking better.

I cast my mind back to when I was fourteen. It was 4.20 am when Dad woke me up.

‘Your mother’s having another heart turn, Michele.’

I jumped out of bed and raced to my mother’s bedside. Mum was paralysed down the left side of her body and her heart was beating so fast, perhaps twice its normal rate. Under my father’s instructions I had to try to get her to swallow a special tablet without choking her. Meanwhile, Dad was in the hallway ringing for an ambulance. Like me, my father was full of fear. I know because he was down on one knee as he spoke, the lilting desperation in his voice palpable.

Mum was trying to tell me what to do but the partial paralysis was robbing her of recognisable speech. I couldn’t understand what she was saying. It was such a relief when Dad was finally back by my side. And there was even greater relief when the ambulance arrived, and Mum was taken to hospital.

Once Mum was under the paramedics’ care, I turned towards my bedroom but I just couldn’t reach my bed. My body refused to take another step. The fear and the shock, delayed and overridden so I could do what had to be done, overwhelmed me. I passed out, smashing my head on a wall as I collapsed. And I would pass out another four times before I made it back into bed. (For some reason, my brother, who was three years older, was not called on to help during this episode, or its frequent repetitions.)

Five years later, I had saved up and bought a round-the-world plane ticket. My desperation to be immersed in other countries and cultures was relentless. There was only one problem: Mum was suffering; her heart was not providing the oxygen she needed. Surgeons were debating what could be done. Even so, Mum didn’t want me staying home to care for her; she wanted me to travel. As a young woman my mother never had this opportunity, yet it remained an idea she relished. And with an intuitive understanding of her daughter’s nature – the natural curiosity, a love of accents, a fascination with foreigners, and dreams of distant lands – she refused to tether me to home territory.

In spite of a severe heart condition, Mum never gave up. She always believed she would find a way through ill-health, and she eventually did, thanks to the advent of open heart surgery.

Now, three decades later, my mother is once again in hospital care.

‘She’s hardly eaten,’ comments the nurse, concerned her patient may need to be on a drip.

My partner and I sit by Mum’s bed and tell her about our weekend. When I mention that we made $600 for the Red Cross Pakistan Flood Appeal by speaking at the book fair and selling books, my mother is delighted.

‘That’s wonderful,’ she says, a spark igniting her life force. Then adds, ‘Tell the nurse.’

‘No, I don’t think she’d be interested … But guess what? I met a lovely artist and she talked about doing a kids’ book together.’

Mum is pleased with this news, and not so pleased that our football team lost the first round of finals yesterday.

When dinner arrives my gentle coaxing begins. ‘Now, Mum, you need to eat. Let’s see what’s on your tray.’

‘Encourage not command’ is my mantra as I spoon the food into her mouth: first the vegetable soup, then a small amount of mashed potatoes and finally some custard. And I wonder how many times, over and over, Mum did this for me.

I am now of the view that as soon as Mum is stable, we need to get her into a place that specialises in aged care. All the technology for measuring oxygen saturation, heart rate and a myriad of other physical conditions is fine, but no-one in the hospital seems to have the time to make sure Mum is eating.

No goodbye

The doctors are on Monday afternoon rounds. They have promised to see me soon. That’s what the social worker and the nurse in charge told me. Other information the head nurse supplies is that ‘they’ are thinking of giving my mother a pacemaker. I’m not exactly sure who ‘they’ are.

‘The doctors will explain it to you,’ I’m advised.

I’ve already had a phone conversation with the social worker from the memory clinic today. She wanted to know if we were okay for Wednesday’s medical appointment.

‘No, we are not.’

Taking advantage of someone who understands the medical system well, and the trajectory of people with Alzheimer’s, I talk through with the social worker two possibilities for my mother: transitional care or an extended care service, which I get the impression is a rehabilitation centre. As she points out, the difficulty is that since Mum is medically unstable, the level of care she will need once she leaves hospital is unable to be determined. And this makes planning difficult.

While I wait at the hospital to meet with the doctors, my mother and I chat. Mum is having a low energy day, and can barely sit up.

‘Aren’t you working today?’

‘Yes, but I left early to come here … Actually, I’m thinking about looking for another job.’

‘I’m sure you can find one just as bad,’ she responds, rubbing her sore red eyelid.

I can’t help laughing. I’m sure it’s not quite what she meant.

Eventually three doctors arrive. They want to know what Jean is usually like.

‘She’s feisty, not lacklustre like this.’

Hearing this, Mum nods in agreement.

‘Good for you,’ says one of the medical specialists – I think she’s the cardiologist – who has let me know she has a soft spot for my mother.

They ask questions, then stand over by the nurse’s station absorbed in conversation. Then, without any we’ll-tell-youwhat’s-happening, without any mention of a pacemaker or any diagnosis, they quietly exit. There is no goodbye.

Oh, Mary!

One of the Catholic accoutrements my mother has in hospital is a 10-centimetre diameter fridge magnet of the Virgin Mary. Holding it close to her, sleeping with the Christian icon under her pillow or resting it on her chest, in Mum’s view is as essential as the line of oxygen she is now relying on.

‘Where’s Mary?’ I inquire, unable to spot my mother’s beloved icon.

‘Oh my God … Michele, I went to the toilet and Mary fell in the bowl. And I wee’d on her,’ my mother blurts out, an incredulous look on her now gaunt face.

‘Did you wash her?’ is my immediate response.

‘I sure did. I hope Mary doesn’t curse me,’ says Mum, worried that her years of devotion have now been nullified.

‘Mum, accidents happen. Mary knows that. She wouldn’t love you any less,’ I respond, giving the fridge magnet a liberal dose of hospital strength de-bug. But I begin to laugh. And when I look at Mum, she starts laughing too. Soon we are cackling and snorting together. (Yes, my snorty laugh must be hereditary.) And we cannot stop. It’s as if a valve has been released.

‘I’m so happy to see you,’ Mum says.

Take me home

Next morning, my attempt to inquire by telephone about Mum’s condition is foiled. Transferred three times before being left on an unanswered line, it looks as if I’m going to have to haul myself into the hospital today.

My mother is still in bed when I arrive in the cardiac unit.

‘Your mother won’t eat and I can’t get her to sit up,’ says the frustrated nurse in an I’ve-given-up tone, to which I reply with a back-off-and-leave-it-to-me look.

My mother is lying down, a soft purple dressing gown covering her body and her face.

‘Mum, Mum. It’s me, Michele.’

At the sound of my voice, she peers out from under the gown, almost suspiciously. She’s not wearing her oxygen mask and her nose has been bleeding, most probably from the clips which hold the oxygen mask in place.

‘How are you, Mum?’

‘They’re trying to kill me. They are,’ says the desperate voice of the once feisty mother who is unsure of her whereabouts. ‘What am I doing in this barn?’

‘You’re not in a barn. You’re in hospital.’

‘Michele, take me home with you. They’re trying to kill me.’

‘Mum, I can’t take you home. I don’t have any spare beds.’

Her snappy retort – ‘Why are you siding with them?’ – surprises me.

Mum has been confused a number of times but she’s never been delusional. I sit there and pat her hand and her arm, but I’m unsure how to console her. However, it’s consolation I’m soon in need of when, in an I’ve-barely-got-any-energy voice, my mother looks over at me and says, ‘Just leave me here, Michele. Go off and have your life. I’ll die.’

Suddenly I find I have to make a rapid exit and seek refuge in a corridor. There, out of Mum’s view, head down, hands covering my face, I sob.

That is when a lovely angel, a nurse who has looked after my mother a number of times, spots me.

My chest and heart heavy, the tears will not stop and my speech is spluttered.

‘Mum just told me to leave her to die.’

This angel is so consoling.

‘I just need a few minutes before I go back in to see Mum,’ is my attempt at assuring her I’ll be fine.

When I return, the angel has cleaned my mother’s bleeding nose and blood-stained hands, and reconnected her to oxygen.

‘Where’s Keithy?’ my mother asks.

The angel and I look at each other. The patient is now asking for her beloved husband. I dare not say he’s in heaven for fear that’s where Mum will say she wants to be.

Mum asking for Dad is natural. Dad always accompanied Mum through her operations, and this began even before they were married. He was the one who, pre-wedding, had to break the news, as Mum lay recovering in hospital from a thyroid operation, that her mother had died; and a few years later, after she woke up from an emergency caesar-ian section, it was Dad who told her that their first child had died.

Dad nursed Mum, accompanied her, and enjoyed being in her company. And he loved the way she doted on him. He really felt he was the man of the house, even though Mum organised so much on the home front. Together they loved dancing, visiting relatives, working around the house, gathering friends, neighbours and family for celebrations, having holidays, and going on picnics. I’ve often wondered if Dad appreciated Mum so much because, unlike most of us, he regularly had to face the prospect that his other half may not survive.

But in this present moment there is no Dad. It’s just me and a compassionate nurse who breaks the silence.

‘You met Keith at a dance, didn’t you, Jean? And he was over six feet tall?’

I am utterly amazed. How could she know that story? As if aware of my thoughts, she tells me, as an aside, ‘I nursed Jean a few days this week.’

When I eventually tell Mum that Keith is in heaven, there is no show of angst, no I-want-to-join-him, no comment. My mother is too exhausted. When the angel signals it’s time for Jean to rest, I take my leave. I’ll return in an hour.

Diving into the water at the swimming pool is the antidote I’m desperately in need of. Never did I imagine Mum would speak to me like that. Never has my mother given up on life. She’s always been a fighter. She’s survived several times when many others wouldn’t. That’s the character I’m used to. That’s who she is. So who is this imposter? Where did she come from? The pool may not provide any answers, but it is refreshing. And it offers much needed time out.

Just over an hour later, it is my mother of old, somewhat tired and subdued, who greets me. When she lets me know that her back is giving her great grief, I race home and bring a range of back cushions and a hot water bottle. However, I’ve neglected to bring something to wrap the water bottle in. Seeing my problem, the fellow opposite Mum, a 41-year-old waiting for a heart operation, suggests I ask the nurse for a towel.

The angel has now gone, and the frustrated nurse is back on duty. As I make my approach, water bottle in hand, she asks, ‘You’re not going to ask me to fill it, are you?’

I explain that, no, I brought it in filled with warm water from home, but I need a towel to wrap it in.

When my mother nestles into the towel-covered water bottle, the relief in her back is clearly noticeable.

‘It won’t leak, will it?’ asks the nurse.

My defiant ‘No’ is accompanied by a don’t-even-go-there glare. Conversation over.

(I’ve since discovered that hot water bottles are contrary to hospital policy.)

No diagnosis

Mum has been in hospital over two weeks and there are two things which elude me: my mother’s medical team, and their diagnosis. I’ve now heard from the nurses that the cardiologist wants Jean to have a pacemaker, but part of her medical team disagree. The nurses also suggest that Jean may require oxygen for the rest of her life, and that she may not be able to return home.

Since Monday I’ve made several attempts to speak to Mum’s medical team – apparently they are a separate entity to her cardiologist. (I’m not sure how it works; how the teams and medical hierarchies are arranged, and who has final say.) I even came to the hospital at 11 o’clock this morning, as advised, to meet with the medical team, only to find they are at another campus. How do I get to speak to a doctor and get a diagnosis?

The answer, I discover, is not difficult – speak to the hospital’s patient representative. Within twenty minutes of that conversation, one of my mother’s medical specialists rings me at home. She is most generous with her time and explanations.

Yes, she agrees it’s taken some time to find out why Jean’s oxygen saturation levels are so low. The difficulty is that my mother’s aortic valve is now much tighter than it was a year ago. Mum is therefore not getting the blood flow and the oxygen levels she needs. In my mother’s case, a valve replacement is not suitable, and with a tightening valve a pacemaker will not have the required effect. Furthermore, the doctors do not want to do anything which would cause more harm. Mum’s lifespan is therefore limited.

I am most appreciative of the explanation and eager to know what the next step will be. It seems that remaining on oxygen and being placed in residential aged care are the two major strategies. Medical specialists in the aged care area will now be called in to meet with Mum and decide what level of care she requires.

Later in the afternoon, the medical specialist I spoke to on the phone is by my mother’s bedside. She has come to explain to my mother – one of her favourite patients – that she will be on oxygen for the rest of her life. The specialist’s approach is gentle and caring. Extremely so. My mother listens. No, she does not have any questions. And I’m not sure if she’s aware of what this actually means, of the logistics it will entail – having an oxygen cylinder with us everywhere we go. She does, however, have a pressing matter of her own.

The back pain she has been experiencing since her fall is so intense. Can she please have a brandy? Daily doses would be preferred. To this the specialist agrees. (She is of the view that making Jean’s last year or so of life as comfortable as possible is a priority.) Accordingly, she speaks to the nurse. Soon after, approval for the daily brandy bolster is written into the patient’s notes.

The two women have each said what’s on their mind. Soon after, the conversation swings to football. When the specialist mentions she’s a Carlton supporter, my mother feels impelled to explain how she used to take care of Marc Murphy each day on the school crossing.

‘That makes you half famous,’ quips the specialist.

It’s a heartening comment which leaves her patient smiling. And how the patient will smile when she sips that first brandy.

It’s been a very cold, long winter. While the temperature refuses to rise to normal spring levels, the flora is bursting out of its winter hiatus. The blossoms and the rich yellow wattle are blooming. Sitting on the porch, gazing over the new growth, I’m reminded that for all of us on earth there are seasons: of nurture, of growth and hope, of creativity, of striving, and also of solace and letting go.

The thing my mother wants most to let go of today, however, is her intractable back pain. This evening she is disconsolate. The pain overwhelms her. She is sitting in the chair beside her bed. I try to feed her but pain overrides any need for sustenance. She pushes the food away and, head in hand, she sobs.

It is at this point that I reach for the bottle of brandy I brought in two days ago, in the second drawer beside Mum’s bed, and ask one of the nurses to get some hot water so I can make a potent mix.

‘Gee, that’s a bit strong,’ whispers Mum.

I look at her and wink. ‘I poured you a double. I reckon you need it.’

Soon after, the nurse helps Mum change into her nighty. In an effort to avoid inflicting pain, very tediously, with extremely slow, smooth movements, she manoeuvres my mother into bed. It’s an excruciating process. No matter which way they turn, all it seems to do is incite pain. My mother is of the stoic school. Pain doesn’t usually rattle her. Now, however, it has reached an unbearable threshold.

It is after this distressing scene that I implore the medical staff to do something about Mum’s back pain, which has arisen due to a fall while in their care. Of this I am sure: something has to be done – immediately.

CHAPTER FIFTEEN

Joy

Mid-September, 2010 Sitting by the window in a new ward, mohair blanket draped over her legs, there’s a look of happiness on Mum’s face and a hearty wave when I walk into her hospital room. The joy of seeing her daughter is so effusive, so genuine, that for a few moments I forget all the medical rigmarole and allow myself to be enveloped in my mother’s intense delight.

She doesn’t want it

Today my mother feels the need to set the aged care registrar straight. No, she does not want to go into permanent care. But respite, that would be fine. The registrar has taken the direct approach, talking to Mum about permanent care. And since this strategy has not worked, she’s ringing to discuss the issue with me.

Telling my mother what to do is often not the best approach. It’s better to plant ideas and then allow her to make the decision.

‘You won’t get her to do anything she doesn’t want to do,’ I say, speaking from decades of experience.

‘Hmmm,’ says the voice on the other end of the phone.

It is a hmmm of tacit agreement.

Furthermore, Mum likes Lovely Gardens. And she associates it with respite. So if you mention permanent care without linking it to Lovely Gardens, my mother will assume you’re talking about sending her somewhere else – somewhere foreign. And she knows where she wants to go. What’s more, she hasn’t been well enough to think through the huge idea of leaving her home. That’s something she’ll need to work through, and for this she needs a little time.

Over the course of our conversation, a call I must take at work, we discuss what Jean was like before her last visit to hospital, her current condition and her need for home oxygen. Soon, however, it dawns on me that embedded in this conversation is the idea of Mum coming home with extra support. And that idea totally startles me.

In my view, it was getting very difficult for Mum at home before her latest admittance to hospital, and the addition of oxygen adds another level of complexity. If my mother doesn’t have enough oxygen, confusion can set in. And living alone, this is problematic. As if to provide some transition time, the aged care registrar says that Jean will be sent to rehabilitation first, and from there we’ll see how she goes.

I can hardly believe that sending my mother home without 24-hour care is being considered. How is she going to manage the oxygen? Who will check that it’s connected? Who will know if she has a problem in the middle of the night? I can’t be there all the time.

A couple of hours later, full of angst from thinking about Mum at home alone, I put a call through to the aged care registrar. She offers me two minutes of listening time. Is she aware of some of the incidents we’ve already had at home? Yes, she’s read about the heater-and-singed-nighty incident. Well, don’t you think it will be even more difficult with the selfadministration of oxygen? When she says that she’s working out a strategy for Jean with a medical team, I suspect from the tone in her voice that she’s changed her mind about my mother returning home. And realising this, I begin to calm.

I also ask how long she thinks my mother will survive.

‘We don’t know.’

‘I’ll bet she makes it to ninety,’ I reply.

That’s only nine months away.

Rehabilitation and research

Mum has begun her rehabilitation, in a special unit she was moved to yesterday. When I arrive, she’s standing up doing gentle exercises, a therapist encouraging her. Her steps are small, but they are fairly stable. And she’s not wearing an oxygen mask. She doesn’t seem to need one at the moment.

After only a few days, it is clear the physiotherapy program in particular and the rehabilitation program in general suits my mother. Although she’s now walking with a Zimmer frame and requires assistance when showering, Mum is regaining the confidence eroded by her recent fall. What’s more, her reliance on oxygen is reducing.

My briefing with the nurse manager is enlightening. Apparently my mother has said that she doesn’t want to live on her own.

‘You mean at home?’

‘Yes.’

I don’t know which to celebrate more, the fact that Mum is managing most of the time without oxygen, or that she’s now making the decision that she no longer wants to live at home alone. However, not everything at the hospital is cause for celebration.

There are two pamphlets on my mother’s hospital bedside table. Both are medical research projects: one is about tissue donation for brain and mind disorders; the other is dementia-specific.

‘Mum,’ I ask perplexed, ‘where did these come from?’

My mother tells me that a doctor, who she hadn’t met before, gave them to her. She also mentions that he said so much she couldn’t follow. ‘I told him to speak to you.’

‘That was a good idea. I’ll take the brochures home and speak to him.’

As I tuck the pamphlets into my bag, Mum tells me that she felt the doctor stayed a bit long.

As soon as I get home, I begin reading about the research projects. And the more I read about the brain tissue project (it seems to be saying politely that your whole brain is required for this research after you die) the more I’m left wondering why Mum was approached first, rather than in consultation with the family member who has medical power of attorney and is her guardian? I need to speak to the doctor in question, the one who visited my mother. Immediately.

The doctor is most amenable. Yes, he is a researcher on one of the projects. Yes, he approached my mother directly. As he speaks I’m beginning to get the picture, or at least part of it. I think this doctor may have been given Mum’s name by staff in one of the medical clinics she’s attended. It seems my mother may fit the requirements of the research project he’s engaged in. And those criteria, as far as I can tell, are twofold: that the donor has some form of dementia, and that their brain will be available within the next eighteen months for donation. (Clearly the person has to have taken their last breath within that time frame.) I do wonder how the latter information was conveyed to Mum.

The doctor recounts his conversation with my mother. From what I gather, he spoke to my mother without any other staff present. Furthermore, the doctor, who has never met Mum before, holds the view that she is competent to sign the permission form for brain donation herself. And that shocks me, because it doesn’t seem to match what Mum told me about their conversation.

Shortly after my shock becomes apparent, I’m offered what feels like a concession – the opportunity to sign the permission form, if that is preferred. Well, what I would have preferred was to be with Mum when this topic was discussed. That way we could work through it, just as we do other aspects of her care.

What I would like answered now, however, is this: how can family members, or the person who has medical power of attorney and is her guardian, be sure that the researcher did not influence the patient with dementia and reduced cognitive ability to sign the permission form? Isn’t it reasonable for someone in my position to ask this question?

By the time I discover that being a part of the project would require taking Mum for more scans (naturally the task of getting Mum there would fall to me) and, once she dies, having a post-mortem, I’ve had enough.

I don’t doubt that research into dementia is vital. However, if Mum had been asked about participating in the study or donating her brain for research when she was not so vulnerable, or if tissue donation had been part of our advance care plan, we would have been better able to consider it, to think about the implications and logistics it entails. And if my mother was really interested, participation and scans could have been scheduled. But not now, when she’s struggling with unstable health, and her future, including where and how she may live, is unclear. There’s already so much to be worked out. We don’t need added complexity.

What the researcher is also unaware of is our family’s experience with post-mortems, or autopsies as the Coroner of Victoria refers to them. After my father collapsed and died at home, the Coroner organised an autopsy to establish the cause of death. Once the autopsy was complete, my father’s body was to be sent directly to the funeral parlour. However, days later when I was finally able to fly home from the US, desperate to see my father, to talk to him, and to touch him one last time, I was met with the news that this was not possible. My father’s body had not arrived at the funeral parlour. He had, it seems, been ‘temporarily misplaced’.

So any suggestion of post-mortem or autopsy, by choice, would need much consideration by our family. And now is not the time.

The following morning, I ring the hospital’s patient representative, who is a very skilled listener. I advise her that I consider the issue so important that I would like to put it in writing to her. I’d also like to suggest what, from my perspective as a carer, would be a better approach – a more collaborative one.

The letter must have some effect because shortly after sending it I receive a phone call from the manager of the hospital’s research ethics office. I am assured of two things, in a very businesslike tone: first, the hospital takes my letter very seriously; and second, the researching doctor was acting within the parameters of hospital protocols. I’m invited to meet with the manager if I so choose. My choice now, however, is to focus on Mum’s care. Meeting with an ethics committee representative will not assist me with this. I decline the invitation – at least for now.

A gathering and a meeting

One of my cousins has always been very close to my mother. Over the years, she has visited Mum regularly and taken her out to functions and parties. In recent months, however, much of her time has been consumed caring for her own dying father. And today, 23 September, it is his funeral.

Two of my brother’s daughters attend the funeral; however, my mother and my brother, both being in hospital, are unable to. It is a gathering of the clan. The old, the young, sons, daughters, grandchildren and great-grandchildren, nieces and nephews, once-upon-a-time workmates and an array of friends whose personal testimonies could provide a lively nine-decade history of life in and around Melbourne – of the trams my uncle worked on, of VFL football when it was a fiercely suburban affair, of cultivating a strict work ethic, of acquiring property, of building houses and creating families, of the estranged and the beloved, and the beauty of belonging.

I definitely drank too much last night. But, in my own defence, it may be one of the last times we’re all together – ‘we’ being my cousins on my mother’s side. With the death of my uncle, Mum’s brother-in-law, all of my cousins have now become tribal elders, while my brother and I are still apprentices.

However, regardless of how I feel this morning, it is attentiveness I must exude when meeting with the social worker, a doctor and other medical staff at the hospital. Today is the day on which Mum’s future care will be discussed.

The decision, when it is announced by the doctor, is not surprising. It is no longer considered safe for Jean to return home alone; low-care accommodation is recommended. As if to back up the decision, two exemplary situations are mentioned.

When the doctor asked Mum what she’d do if there was a fire in the house, she said she’d jump out the window.

‘I’d like to see that,’ says the doctor, in jest.

I can actually understand Mum’s logic. Depending on where the fire is in the house, she might not be able to get down the hallway to the front or back door. However, there is no mention of ringing the fire brigade, or calling anyone for assistance.

Second, when she was with the occupational therapist, and they were practising using a microwave oven, my mother put the metal meal tray in the oven. Even with practice and priming, the task was just too difficult for her.

I’m then handed some printed pages with a list of aged care places, and informed that within the next fortnight I’m to select six; that Jean will be sent to whichever one has the first available vacancy.

That may be the hospital’s approach, but my mother and I have developed a different system. Mum has been trialling respite, and she knows where she wants to go. When I announce that this morning I have procured a place for her beginning in October, at Lovely Gardens, the hospital staff are most impressed.

When the meeting is terminated, I tell my mother that the doctors think it’s not safe for her to go home. Respite might be a good place. I don’t labour the fact that it’s permanent. I prefer her to make that decision. Besides, the doctor has told me that he’s already discussed this with her.

Wretched

Yesterday was the last Saturday in September, and for Melbournians, that can only mean one thing – AFL grand final day. My partner spent the day watching the match at a pub, while I preferred to watch it relaxing on the couch at a friend’s place. It’s the post-match drama, however, rather than the suspense-filled draw which remains memorable.

It is dinner time when I return home, but eating is not possible. It’s not that I’ve drunk too much. It’s just that the waves of nausea won’t stop. And they have not dissipated hours later when, close to midnight, my partner arrives home.

Feeling so wretched, I stand in the kitchen with a bowl at the ready in case of a gut eruption. My partner, however, arrives home in a different kind of wretched state. He has a bloody gash above his right eye – from a head-butt, courtesy of a disgruntled Collingwood supporter – and it needs some attention. He may need stitches, but since I’m in no condition to drive him to the hospital, and nor is he, the wound is cleaned and covered at home. Then bed beckons, and within seconds he’s snoring. Sleep, however, eludes me. And the 2 am vomiting spell fails to bring any relief. With each hour my body feels worse.

It is the echoing thud at 4 am that stirs my partner. What was that? It sounded so close. And where’s Michele? Searching, he finds me collapsed on the floor, lying on my back, my head on the hard tiled floor, the rest of my body in the carpeted hallway. (My attempt to make it to the toilet had been foiled.) The waves of projectile vomiting will not stop, and for some reason I cannot move. I try, but the dizziness is relentless.

‘I’m okay, I just can’t get up. Get the phone. I need an ambulance.’

The ambulance, however, takes two hours to arrive. For these two hours I remain on the floor. Movement of any kind is just too much. My partner keeps a cool compress on my forehead, cleans the vomit out of my hair and off the walls, and tries to speak reassuring words.

When the paramedics arrive, my partner is greatly relieved. As he greets them out the front of the house, they spot his poorly bandaged gash. He is quizzed as to whether the woman inside the house hit him. Will the paramedics be in any danger if they enter the property? No, please enter. No domestic violence here.

It is nearly 6 am when I’m finally delivered to the closest hospital’s Emergency Department. However, the corridors are so stacked with patients that I’m sent back out to the waiting room. Grand final night and early the next morning is not the best time to be seeking medical attention. Eventually I’m seen, diagnosed as having a bad gastro, put on a drip, and later that morning sent home.

However, back home I cannot stand up and the nausea persists. Even turning my head slightly induces a disorienting wave of dizziness. The following morning, with some assistance, I do manage to stand and shower, but that’s as much as I can do for the day. And the pressure in my head refuses to subside.

By Tuesday I’m back at the hospital. I don’t care about the wait; I just want to have a scan and make sure the pressure in my head is not something dastardly. What I didn’t realise last time I was in the Emergency Department was that I must have collapsed and smashed my head on the hard tile floor. Now I can provide that vital information. And hopefully my head can be examined and scans taken.

Seven hours and a CT scan later, it turns out my skull is not cracked and there is no apparent brain bleed, so she with the bruised brain – severe concussion – walks slowly out of the Emergency Department, extremely relieved.

At home next morning, all I can do is sit still. Moving induces dizziness. I sit on the couch in the lounge room, blanket around me, much like my mother does. And like her, I can’t keep thoughts in my head. They just keep floating away. My head can hold no worries, no concerns about Mum, no delving into the future, only an immersion in the immediate. It is a sublime sensation.

By late morning, sunshine lures me onto the back balcony, where I sit casting a space-cadet-like gaze over the spring blooms. For much of the afternoon a butcher bird keeps me company. He hops and jumps with acrobatic gusto through leaves I gently rake into a small pile, not the slightest bit deterred by my presence. He makes an excellent companion.

Her decision

On the first day of October, Mum is transferred to Lovely Gardens by ambulance. Denise takes me to visit, and to provide her with some personal essentials: fresh clothes, her comb, a few packets of jubes and lollies, and a clock. She’s sitting up having lunch, looking quite at home.

We go back to her room, chat and unpack. As I leave she says, ‘You know, Michele, I don’t think I’ll go home.’ And she’s saying it as if it’s her decision.

I can hardly believe what I’m hearing. How delighted I am that it’s Mum telling me, rather than vice versa. Now I can really rest at home and recuperate, knowing my mother is being well cared for, and that she’s actually chosen to be here.

CHAPTER SIXTEEN

A quantum leap

Early October, 2010 Lovely Gardens is only about six bus stops and a seven-minute walk from my home. I know because I counted them today. It is now possible for me to ride in the bus without the jerking motion causing pain in my head. There’s still a feeling of slight pressure in my skull and some dizziness, but they are diminishing. However, dizziness or not, this afternoon I have to summon all my concentration to negotiate the bond for my mother’s stay at Lovely Gardens.

As Mum has only been in respite until now, a bond was not required. But for permanency, a substantial bond is a prerequisite. And from conversations I’ve had with other low-care residences, it seems that the bond amount depends, in part, on negotiation skills.

Mum really likes living at Lovely Gardens. She’s been in exercise class and played bingo already, and is heading back to her room for a rest when I arrive. She needs to be in good form by 4 pm. That way she can consolidate her place in her favourite lounge armchair, be seated among her new favourite friends, and enjoy the 4.15 pm pre-dinner drinks.

‘I don’t think I’ll go home. It’s not safe,’ she says, referring to her fall.

‘I know what you mean, Mum. I don’t know what I would have done if I was home alone when I had my fall. It’s taken me over a week to have the confidence to shower when no-one else is home,’ I respond.

It seems my mother has made the quantum leap into the next stage of her life – living with assisted care. I’m able to mention the difference in costs between respite and permanent care; that the house can’t stay there with no-one in it for a long time. Mum has always said she doesn’t want it rented, so perhaps it will be sold.

‘Just give me a couple of weeks,’ she says.

Another seed has been planted.

The only choice

It’s clear that the only practical way to raise the bond required by Lovely Gardens is to sell Mum’s home. Her financial planner, who specialises in aged care, has done the sums. I’ve mentioned this meeting to Mum without causing any obvious angst, and that selling her home may be one option.

In anticipation of the inevitable, I’d already met with two real estate agents to discuss why each of them should be appointed to sell my mother’s house. However, neither was appropriate, one because he doesn’t usually sell houses in the area, and the other because of his unsuitable manner: ‘Don’t do anything else to the house, it’s a waste of time. A buyer will just knock it down.’ (I would have thought a more astute approach would have been to at least consider owner–occupiers. After all, I’ve had all the main rooms of the house painted, fences and drainpipes fixed, and the house is very liveable. )

This afternoon I meet with two more real estate agents. One is a young salesman with an aggressive sales pitch and a propensity for unrelenting verbal description. Yet all his textbook sales ploy induces is a throbbing pain in my head. The other salesman is in his forties. He has years of real estate experience tucked under his belt, a property similar to my mother’s house in the same suburb up for sale in the next couple of weeks, and from our first phone conversation he is reasonable to deal with. He also negotiates the commission rate. I can’t say if it’s because his age is closer to mine, or because he manages to negotiate a deal without inflicting more pain in my head, but I leave the house this evening thinking that he’s really the only choice. Still, I’ll take a day to think about it.

Accumulation

It’s my first day back at work after three weeks off, and it’s clear by late afternoon that I need more time to fully recuperate. I’ll have to take leave without pay. However, investing in the recuperation of my bruised brain seems far more valuable than a full pay packet.

On the way home from work I visit Mum and let her know the financial planner thinks it’s better to sell her house, rather than rent it. What does she think?

‘Michele, what use is it to me? Sell it,’ replies the woman who, only two months ago – until she split her head open in hospital, to be more precise – would not consider leaving the home she dreamed of, then designed and built with her husband, under any circumstance.

Accumulation seems to have been an artform my mother excelled in. Five decades of it are fiercely evident in her home: walls covered with photos and oil paintings; rooms filled with furniture; furniture covered with marks; knickknacks replete with cracks and chips; appliances laden with dust; cupboards, cabinets and drawers crammed with contents. There’s also the Stuart crystal, a small collection of porcelain figurines, bone china and religious accoutrements, which all need to be handled with care.

The mighty effort to make the inside of the family home look clean, spacious and well-cared for – three apparent prerequisites for a successful property sale – has begun. It gobbles days, energy and emotions – particularly mine.

‘You have to leave that photo there. Mum loved it. No, that picture hangs that way. Mum loved that piece, we can’t throw it out.’ These are the kinds of frustrating lines I repeat to the team of helpers now assembled.

That team consists of a friend who knows which items are collectables and which objects from the jam-packed crystal cabinet can be given to St Vinnies; a friend’s father, who fixes drawers in my mother’s main dressing table; a couple of handymen who, for $20 each, will move couches and tables into the garage; my partner, who unexpectedly arrives with a carpet-shampooing machine; a friend’s mother, who says yea or nay to my decorating ideas; the taxi driver who carries me and all the props from my home which will be used as finishing touches; the florist, who supplies me with the right kind of flowers; my cousin, who gives opinions and makes suggestions; the cleaner, who sets about cleaning the windows until they sparkle; and me, the project manager, leading hand, worker, surveyor and purveyor. It’s a remarkable team effort that brings the property up to photography standard by the noontime deadline.

Spring

Late October, 2010 Today, spring is accompanying me. At least, that’s what it feels like. My head is feeling much better, Mum’s house is now ready for sale, and rather than me trying to find someone to take my mother to the doctor – I still can’t drive – the medico will visit my mother at Lovely Gardens.

The stresses and pressures of the last few months are subsiding; I no longer feel weighed down with worry. Huge decisions have been made, and my mother is happy. There’s a sense of lightness, of freedom, and even time to think about a holiday. And today, for the first time since crunching my head, I’m able to immerse myself in water at the swimming pool.

Mum is kept up to date with what’s happening to her house; what’s being done to prepare it for sale. When I inquire if she’d like to see it again, keeping in mind that when she left it last time she thought she’d return, she makes it clear she has no wish to revisit the family home. And I don’t blame her. The home she ruled for over fifty years is barely recognisable. Most of the family photos are gone; half of the furniture has been cleared out; there are loads of new pink spring plants near the front entrance and modern bedspreads in the bedrooms; the old curtains have been taken down; and there’s a board in the front garden bearing the word ‘Auction’.

I thought it would upset me, seeing our family home officially for sale, but now all I want to do is sell, get my mother a realistic price, and pay the bond at Lovely Gardens. From my point of view, so long as Mum is happy, comfortable and well cared for, which she is, then I can handle any other situation, be it medical, physical, emotional, or, please God, delight.

Comfortable and in control

The first Tuesday in November in Melbourne is an exciting time – Melbourne Cup Day. And the residents at Lovely Gardens are not averse to a flutter. Four sweeps, at either $2 or $5 a horse, are running. The list of residents and their horses is stuck up on the whiteboard in the main lounge area. Many go up to the board to check their horse’s name, and then, by the time they return to their seats, have forgotten. So up they go again. And again.

‘I’ve got So You Think,’ chirps Mum enthusiastically.

And she’s correct – without checking the board. She has the Bart Cummings favourite in the $5 sweep.

‘That will be a nice little winner,’ I respond, hopeful that my own bet on the same horse returns a dividend.

Mum is keen for the races to begin. She loves watching the spring racing carnival on the television, and not just because of the horses. It’s the colour, the excitement and the fashion that draws her. And of course, the hats. It reminds her of the life she used to have – the young milliner at George’s on Collins Street being sent to the spring races to peruse all the latest fashions. And she’s still able to note the fabric, its texture and body, its style and colour, and comment on whether or not it complements the face it frames and the outfit it accentuates.

On days like today I appreciate my mother living not too far away. This morning I go for a swim, visit Mum, and then head off for an afternoon of Melbourne Cup activities. I could take Mum with me; she’s certainly invited to the Cup Day celebrations. But these days she’s not keen to leave her new residence. She feels comfortable there. Comfortable and in control.

Comfort and control, however, are not features of our early November excursion to the eye specialist. The specialist’s rooms, we discover, are perched on an incline which could rival a Nepalese mountain track. If I park out the front in the street, there’s a steep descent from the pavement down to the front entrance. Parking at the bottom of the slope, behind the clinic, is out of the question: Mum would never scale the ferocious incline. And even parking in the side driveway close to the entry, just long enough to unload my mother and her Zimmer frame, the threat of Mum tumbling is not at all remote.

Appointment over, we must then return to the car. My mother, with the aid of her walking frame, moves along the path at the pace of a wallowing wombat, her daughter close behind. She props herself as near to the passenger side door of the vehicle as possible, then, as she lets go of the frame that’s supposed to steady her, her body jerks in an I’m-headingdown-the-hill movement, her full weight lurching backwards. Fortunately, she falls into my arms and is subsequently deposited into the front seat of the car. I must admit that it is with some relief that I return her to Lovely Gardens.

The next week, on Monday afternoon when I visit Mum, she’s in fine form. The spots on her back and face, a rash which seems to have flourished since she’s been in the aged care home, is not denting her spirits. She is seated in the lounge area beside her mates, Yvonne ‘who is really ill’ and Hazel – ‘Not Hazel Hawke,’ she advises me. (Mum is aware that Hazel Hawke, who she admired, had Alzheimer’s.)

‘Poor Hazel,’ she tells me. ‘She doesn’t know where she is sometimes. And she forgets things all the time. I’m really lucky, Michele, that I’m in such good health and my memory is pretty good.’

‘Well, you do forget a few things,’ is the most diplomatic response I can muster, considering that she will repeat some information five times over the space of our thirty-minute encounter. She’ll also introduce me to residents over the other side of the expansive lounge room who have met me many times before. Still, what we can be sure of is that my mother has not lost her taste for a pre-dinner drink.

Mum may not be able to get out and shop for her necessary supplies, but that doesn’t mean she’s cultivated a go-without mentality. Instead, she’s worked out who to speak to so that her orders are relayed.

‘Michele, your mother asked me to ring you to bring in some brandy.’

‘But I checked on Saturday and she had a third of a bottle.’

The subsequent lengthy pause gives the messenger time to check Mum’s room for brandy.

Apparently my mother is correct. There’s an empty brandy bottle on top of her mini-bar fridge.

‘Okay. Tell her I’ll bring it in tomorrow.’

Mum’s allowed to have brandy, but she’s not meant to keep the bottle in her room. Unable to remember how many she’s actually had, she tends to undercalculate and pour herself another. I’ll have to speak to the manager and suggest we revert to the previous system, where the brandy bottle was kept in the office, and staff measured and poured Jean’s evening nip.

CHAPTER SEVENTEEN

A message

November, 2010 The message left on my mobile phone at 12.17 pm on Thursday, 18 November is brief, yet urgent. Jean’s had a fall. Please ring. Unfortunately, I don’t receive it until 2.45 pm. And it’s a further hour before I arrive at the hospital.

My mother is lying in bed, a starched white cotton hospital gown covering her thinning frame. She is attached to a drip, is on oxygen, and looks distressed. Her right hand is on her forehead as she groans, then opens her eyelids and focuses on her visitor.

‘Michele, can you hear that noise? That beep?

‘Yes, it’s the machine just behind you.’

‘Oh, I thought it was the sound of my heart; that I was going to die.’

‘No. I’d say you’ve got some living to do yet.’

‘Good,’ I hear her say, almost under her breath.

Apparently, when Mum fell, the sound of her head smashing on the floor was so loud that staff a couple of rooms away heard it. How remarkable, then, that she hasn’t fractured her neck or skull, and, bruising aside, the medical staff can’t detect any sign of a brain bleed.

That news, however, does little to ease the distress my mother appears to be in. And the briefing from the doctor isn’t brimming with good news either. She suspects that Mum’s falling over may have been caused by lack of oxygen due to tightening of her heart valve. And, if that’s the case, we can expect more similar occurrences.

When I explain that I have medical power of attorney, I’m taken aside and asked if my mother should be resuscitated in the case of an emergency. I know we spoke about this with Mum’s GP some years ago, and I know my mother’s wishes, but tears well before I can answer.

‘Mum doesn’t wish to be resuscitated if she would have little or no quality of life.’

The patient is struggling.

‘Can you get me a bit of brandy with warm water?’

The same question is fired at the doctor, the nurse and me, repeatedly. And each time she is refused. My mother is clearly not comfortable; she’s clutching her heart. I’m hoping that it’s really her head that’s causing the pain, but, just in case, I say a little prayer that if she does have a heart turn, it’s after I leave. I know it’s not a prayer to be proud of. But it’s honest.

My mother also has things on her mind.

5.35 pm. ‘I’m not allowed to get up, am I?

‘No.’

‘Am I staying here the night?’

‘Yes, but the doctor said maybe not in this room.’

That news seems to please my mother, who’s getting tired of the noise and commotion in the Emergency Department.

5:37 pm. ‘Am I going home tonight?’

‘No. I think they’ll keep you in overnight.’

5:45 pm. ‘Will I stay here tonight?’ she asks, grasping her chest.

‘No. There are a few doctors who want to check you out. You’ll be here overnight.’

5.47 pm. ‘Why does that bell ring all the time?’

‘It’s monitoring you.’

‘Ah ha.’

Hand back on head, and then over her forehead, she relents and closes her eyes – briefly.

5.50 pm. ‘Michele, I feel real bad.’

‘What sort of real bad?’

‘I don’t know if it’s my head or my heart.’

‘Well, they’ve checked your heart, so it’s probably your head. You’ve bruised your brain.’

‘Uhhhhh.’

Hand over forehead. Deep sigh … groan.

6 pm. ‘Michele, do you think I can get out of bed?’

‘No. Not yet. How about tilting your bed up a bit so you’re almost sitting up?’

‘Yeah,’ the patient says, with a look I interpret as, ‘You’ll organise it for me, won’t you?’

6.04 pm. The nurse arrives and props Mum up in bed. Then she leaves.

‘What’s that noise?’ my mother asks, referring to the beeping.

‘It monitors patients.’

6.07 pm. ‘It’s a bit hard for you, being here all the time, isn’t it?’ Mum asks.

‘Well, I like to know what’s going on.’

At 6.15 pm, I take my leave as the set of questions my mother wants answered are repeated yet again. Outside the hospital I wander down the street, thinking about Mum. One thing for sure: she’s a survivor. And the second thing for sure is that her daughter needs a good stiff brandy.

Anxious

Two days later, my first thought as the sun’s rays filter through the front doorway is that if Mum isn’t able to return to Lovely Gardens, a low-care residence, and needs to go to a high-care facility, then it would be better not to sell the house. Most high-care residences do not require a hefty bond. My partner, who listens to these early morning ramblings, is reassuring. ‘You can only act on the situation as it is. And that’s what you’ve done.’

However, it is not the only cause for concern. Three visits to my mother yesterday and three today do little to quell her anxiety. And it would only increase if she knew that the hospital had lost my contact details and that Jane, one of Mum’s favourite nurses, had been unable to contact me.

Jane has nursed my mother several times this year at the hospital, and the pair have taken a liking to each other. Jane has such humility and is so caring that when she found Mum wanted some barley sugar, and hospital staff were unable to contact me – they couldn’t find my contact numbers on my mother’s medical file – she went down to the kiosk and bought the sweets herself. No fuss, no bother, and absolutely no repayment required or accepted.

An upshot of my contact phone numbers apparently vanishing from my mother’s file is that I must bring in a certified copy of my enduring medical power of attorney, and then wait at the staff desk while a male nurse enters my personal contacts into the computer system. A few impatient deep breaths and an aspirated sigh are the only outward sign of my mounting inner frustration. (I’m well aware of Mum’s mantra: treat the medical staff in a public hospital well, and there’s more chance you’ll be treated well.) I could ask how that vital information about the medical power of attorney has been lost or misplaced, but I need to conserve energy. Mum needs a lot from me this evening.

Mum is anxious, in a way which is different from other bouts of illness. She’s so unsettled. And instinct tells me it’s not just about the dizziness from the whack on the head.

She sits on the chair beside her bed while I make myself comfortable, sitting on the bed. During our chat my mother agrees that she’s anxious, that she can’t relax. And the cause of that anxiousness, it turns out, is her fear of dying. While I tell her that I don’t think she’s going to die right now, I’m also mindful of her medical condition, and that the remaining days of her earthly existence are not bountiful. Perhaps she knows something that I do not.

My mother is expressing deep-seated fear that is wracking her being; that has her in such a state that she doesn’t want to get into bed at night for fear of not waking up in the morning.

‘Do you still have your faith?’ I ask.

‘Yes, I do,’ is the instant reply of the avid Catholic.

‘Well then, let’s breathe and pray together.’

And with that I invite her to breathe in the peace of God, or Jesus, or Mary, for three counts, and then breathe out her worries.

‘Breathe in peace, two, three; breathe out your worries. Breathe in peace, two, three; breathe out, two three …’

And on we go, breathing together, praying together – gently.

Mum begins to relax. Just a little. I’m not sure if it’s because of the breathing exercise, the company, or having allowed a locked-up, escalating fear to escape.

Later, Mum apologises for upsetting me. I assure her that she hasn’t upset me at all. I’m more than happy to sit with her and breathe in peace. My mother is going to have to come to terms with dying, to make her own peace. All I can do is be there, to accompany her as she prepares for that final part of her earthly journey.

Sunday evening when I visit Mum and she sighs about how much she’d like to have a brandy, I wink at her and motion for her to shhhhh. She understands what I mean when I take out a little plastic container holding the medicinal elixir. Delight sweeps across her face like a northerly wind on a blustery, hot Melbourne summer day.

I could go through the medical red tape and get the specialist to reiterate that it’s okay for my mother to have a brandy, but tracking down particular specialists takes time. So the official route has been circumvented.

However, my mother needs exercise; to perambulate (with her walking frame) the cool white corridors of a ward that seems to have become an infirmary dedicated to the aged. Our perambulation pace may be a shuffle, but the conversation – a discussion of the clandestine manner in which the brandy could be consumed while remaining undetected – is exuberant. Mum is excited.

Exercise completed, we return to my mother’s bedside. The tired nurse, telling us that the end of her shift cannot come soon enough – one more hour to go – is asked to bring a cup of hot water. It is a request to which she promptly accedes. Then, while she tends to another patient on the other side of the four-bed room, I pour the half a shot of brandy into my mother’s glass and carefully add just the right amount of hot water. Soon Mum is savouring each drop.

Of course, what I haven’t taken into account is medical staff returning to take my mother’s blood pressure, pulse and temperature. The nurse, with energy and sharp observations skills waning, fails to notice anything untoward as my mother sucks on a barley sugar to hide her alcohol-tainted breath.

Mum is happy, so happy that for the first time since she was admitted to hospital three days ago, there is no request for her visitor to stay longer. I lean over, bringing my face close to my mother’s eyes, kiss her and say goodnight as I take her hand in mine. She smiles. We both do.

At the hospital the next afternoon, my mother is seated in a grey chair beside her bed; a good friend of mine, a religious sister, is seated on the other side of the bed, chatting to her.

‘Michele, did you bring me anything?’ Mum asks, almost as soon as I arrive.

‘Yes,’ I reply – the positive response igniting an enthusiasm in her demeanour.

However, there are so many staff on duty, whisking in and out of the room, pulling back curtains and writing notes in folders, that I tell her, in coded conversation, that I may not be able to mix her a brandy and hot water. Speaking as a woman whose judgment would not falter, and who believes that her daughter would not fail, she replies, ‘You’ll find a way.’

And that way becomes apparent when our favourite nurse, Jane, announces she’s going for a half-hour tea break. We look at each other knowingly.

Mum watches intently as I open the small red container with a clear seal. The religious sister, who keeps watch as I mix the elixir in a plastic cup, is of the view that bending the rules can be good for the soul.

It’s the brandy, however, not the rules or her soul, that my mother is focusing on right now – and soon savouring. There’s a look of contentment on her face, a look that in hospital we rarely see.

Don’t get upset

Sometimes my wish is simply to get through the day at work without any of Mum’s needs requiring urgent action. Today, however, is not that kind of day.

At 10.15 am, there’s a phone call from the receptionist at Lovely Gardens. She advises that Jean has finished respite and will become permanent when she returns from hospital. ‘Fine,’ I think to myself as I listen, keeping one eye on the clock, as I’m about to start my Tuesday late-morning class. Then I’m told that when Jean returns she’ll be in the same room – fortunately, as she loves the courtyard view – but that staff had to take out the television, the bar fridge and the big old armchair.

‘No worries. Mum’s house is being auctioned this weekend, so I’ll take over some furniture after that.’

As a verbal postscript, I add that the hospital told me yesterday that Mum will be in for a few more days, then hang up and race off to class.

At 1.30 pm my mobile phone rings. Apparently the contract we signed for Mum’s permanent care will need to be reissued since my mother was not at Lovely Gardens the day she was supposed to become permanent, which means the date on the contract is incorrect.

‘Fine, send me out another contract. I’ll sign it and return it straight away.’

At 1.45 pm there is yet another phone call about Mum. It’s a woman from the hospital, and what she says so shocks me that I forget to note her name or position.

‘I’m just letting you know your mother is being released from hospital today and transport has already been arranged for her to go back to Lovely Gardens, between three and four today.’

Almost as soon as these words are uttered, the logistical part of my brain, whichever side or level that may be, swings into gear. As do my adrenal glands. Mum will be so upset if she returns to her new home, her permanent room at Lovely Gardens, and finds there’s no chair to sit in, and that her little fridge and TV are missing. Okay, I can bring a TV over tonight; I can arrange a fridge in a couple of days; but she needs a decent armchair to sit in. Ringing Lovely Gardens and speaking to the receptionist, I begin begging for an armchair. Five minutes later, I’m advised that a chair is in place: not a recliner, but a cushioned chair which will be an adequate interim measure.

That evening, as I walk down the hallway approaching Mum’s room, I see the front part of a walking frame emerg-ing from her doorway with my mother half attached to it. Her right hand is holding onto the black handle of the frame, while her left hand, rather than clutching the other handle for stability, is holding a clear plastic cup with brandy in it. She obviously believes she can manage the frame and the brandy and get to her destination, the lounge room – a thirty-metre walk – without a spill. Seeing how shaky she is on her feet, however, I have more than a flicker of doubt about this particular endeavour. My voice is stern and slightly exasperated.

‘Mum, what are you doing? You have to hold the frame with two hands – not walk along balancing a glass of brandy.’

Mum backs into her room not unlike a frightened rabbit seeking refuge in its burrow. I take the brandy out of her hand and implore her to sit down. The more I try to talk to her, however, the more my frustrated tone becomes apparent.

‘Don’t get upset with me, Michele. I can’t handle that,’ says the meek voice of a woman whose fragility is as evident her advancing years.

Looking around the room I note that Mum now has the bottle of brandy back in her room, perched on top of the bedside drawers, next to her armchair – this being contrary to the plan I worked out with two of the management staff only a few days ago.

Some days caring and niceness seem mutually exclusive.

‘Mum, the manager here spoke to me and said you can’t have the brandy bottle in your room. They’ll keep it in their office and you can go and get a drink at 7 pm each evening.’

My mother instructs me to check this is the case. We sit for a while until Mum is more settled and my composure has returned. She finishes her drink and a few minutes later asks, ‘Tell me, Michele – have I had a brandy tonight?’

‘Yes, Mum, not so long ago,’ I respond.

Her question is confirmation that the strategy to keep her bottle of brandy in the office, where staff will know how much she drinks, is a good one.

I take the bottle to the office and explain to the night duty staff that a plan has already been put in place by the manager and that it is most important that other evening staff are aware of it, and follow it.

Exhaustion has consumed my being long before I leave Lovely Gardens. Once home, I pour myself a medicinal brandy and then reflect on the last week, in which I have been logistician, pastoral carer, bar attendant, rule-breaker and negotiator.

Later that evening, in a long-distance conversation with my partner, who’s away on business, my urge to debrief cannot be quelled. While he prefers that talk about the bumpy terrain I cover accompanying my mother through memory loss and the medical maze not dominate our conversations, tonight he recognises that I need more than brandy.

Searching

For the last few weeks Mum has been so scared of not waking up in the morning that she refuses to go to bed. When visits by priests and religious sisters fail to alleviate her fear, nursing staff at Lovely Gardens suggest I invest in an electric reclining chair. That way she can recline until she is almost lying down, and then hopefully fall asleep.

For anyone like myself, who I fear was born without a shopping gene, spending one and a half hours in a homemaker centre searching for a suitable electric reclining chair, one with guaranteed immediate delivery, is as much a test of sanity as patience.

And I do feel my sanity is being tested as I walk from store to store in search of just the right recliner. When I finally find exactly what Mum needs, the saleswoman says, ‘You can’t buy floor stock. You’ll have to wait over a month for delivery.’

Well, we can’t wait. Mum can’t. She needs a chair that supports her concussed head. Now!

News

At 10.30 this morning there’s a gap in the late November rain which has persisted for more than twenty-four hours. It’s also state election day, a factor I hadn’t taken into account when arranging the 11 am auction of my mother’s home.

Jazz musicians play at the front gate, while one of the sales team walks up and down the street ringing a bell. The festive atmosphere has done little to loosen the double knots in my gut.

All the work – having rooms painted, fences and drainpipes replaced, furniture moved and stored, cupboards cleaned, crystal shone, and fresh flowers on display – has been for today’s sale of the family home. Hopefully it will achieve the valuation price.

However, the valuation does not take into account the memories, the emotions and the iconic status that the family home has provided for the fifty-one years of my life. There have been so many precious intangibles in this simple, threebedroom brick abode. As the auction begins, the thought of the family home selling brings tears of sadness. But they’re soon replaced by tears of fear. Ten minutes into the auction, there’s every chance the property will not sell.

My partner, seated beside me on the couch in the front lounge room, has a look of disbelief that seems to mirror my own. I know interest rates went up only a few weeks ago, but I felt sure the house would sell.

There’s some relief when the bidding starts. But it’s sluggish, as if there’s not enough life in the battery to get the motor going. Twenty-five minutes have elapsed since the auction began when the agent rushes into the lounge room to confirm that I agree to sell the house at the reserve price, which is still $2500 higher than the current highest bid.

‘Yes, of course.’

The auctioneer now announces that only $2500 separates bidders from owning this home. It is then that a third bidder pipes up. By increments of $1000 or $500 we slowly reach the required price. However, it comes at a cost. Within two hours of signing the contract and selling the family home, the muscles in my back tighten and spasm. And so I limp later that day to Lovely Gardens to let Mum know her home has been sold. It is news that she prefers not to dwell on; news that has little effect on her daily routine; news she is able to accept – admirably.

Scone time

Early December, 2010 The best time for visitors to see their loved ones at Lovely Gardens is Sunday at 3 pm. That’s the time at which freshly made warm scones with jam and cream are served. Many of the residents have some form of dementia, many would not be able to tell you the day or the time, but all of them seem to know when it’s scone time.

Mum has settled back into life at Lovely Gardens. She’s a little weaker than she was before, but she still attends exercise class, and in-house activities. And she’s still managing without being hooked up to oxygen. And for me, calling in to visit her each day is as natural as going for a walk or a swim. It’s now just part of my daily routine.

Almost 4.15 pm It’s late afternoon and my mother is relaxing in her brand new recliner. (Fortunately I was able to buy one online and have it delivered two days later.) Now, Mum can sleep in her chair in a fully reclined position, and once the night passes and her earthly existence seems more certain, she can get into bed.

When I visit her this afternoon and remind her that I leave tomorrow, 10 December, for three weeks in Vietnam, she’s happy. I could tell her about all my deliberations – how I’ve already had to cancel previous overseas holidays with my partner, and how part of me wants to go, but part of me wants to stay – but decide against it. The agreement I’ve made with my partner is this: should anything happen to Mum that requires my presence, I’ll be on the first plane home. But he’s keen for me to have a rest, and I know I need one. What’s more, if I stay in Melbourne getting a break will be difficult.

‘Now listen, Michele. You make sure you enjoy your holiday,’ says Mum, delighted that my urge to travel has not dissipated.

‘Thanks, Mum. Denise will visit you every week and send me messages, and a couple of other friends and family will too.’

My mother is fine with all of this. Then, realising that it’s almost 4.15 pm, she announces that it’s time to go to the lounge – time for drinks. She heads off with her stroller, wheeling at some pace to her destination.

‘I’ll see you in a few weeks,’ I say, kissing her goodbye as she turns from the reception area into the lounge.

CHAPTER EIGHTEEN

A text message

Late December, 2010 The last few days, my partner and I have been enjoying a low-key island off the south-west coast of Vietnam. However, our trip doesn’t run its three-week course. Many of the extended family who visit Mum on Christmas Day find her in reasonably good spirits. However, it is a text message sent on Sunday, 26 December which first alerts me to the fact that Mum is in hospital because of low oxygen levels, though all is under control.

It’s a subsequent fall in hospital, however, which, thousands of miles away in Vietnam, stirs my concern. The doctors are amazed my mother could have such a fall, whacking her head once again, without any apparent loss of function; there’s no need for me to return home.

Naturally, there are no assurances. Medical staff from the unit caring for my mother keep watch for any sign of deterioration. They’ll ring me again tomorrow.

A phone call

The following morning, my partner goes off on a pre-booked snorkel boat for the day, while I elect to stay at our bungalow, remaining contactable. And it’s just as well.

Less than an hour after his departure, news arrives that there are now worrying signs that my mother is deteriorating – most noticeably, her loss of speech. That’s all I need to hear to instigate an immediate return.

My international ticket via Singapore is now of little use. I need to get home quickly, and the fastest way is a direct night flight from the island we are on to Ho Chi Minh City – a one-hour domestic flight – and from there to Melbourne. However, I need to speak to my partner; I can’t just leave him.

Fortunately, the owner of the hotel where we are staying gets a phone call through to the boat my partner’s on.

‘The hospital rang just after you left. Mum’s deteriorating. I’m going to have to leave straight away. I’m sorry, but the only seat I can get out of here is on the last flight at 3 pm. Your boat won’t be back by then, but I can’t wait until you get back. I have to get back now. I’ll get a direct flight from Ho Chi Minh City. I’ll ring you from Melbourne, in the morning.’

The line crackles. My partner, although somewhat shocked, agrees. It’s what I must do.

The wait at Ho Chi Minh Airport is one of the loneliest times of my life. At least from here I’m able to have a proper conversation with my partner. Perhaps I’d been too optimistic thinking Mum would bounce back. But all I want to do now is get back to Melbourne.

And naturally, I think about my father’s death. I’d left El Salvador, where I was living at the time, and I was in the US on my way back home for a visit when the shocking news of his totally unexpected death was announced. I don’t want it to be like that this time. I don’t want to be away. I just have to be there.

An arrival

On Tuesday morning, 28 December, my cousin collects me from Melbourne’s Tullamarine Airport, drives me home to drop off my bags, and then straight to the hospital. When I walk into the ward, Mum’s face lights up. Although she no longer has much command of her speech, as the hours pass I learn to interpret her short answers and comments. And she’s even able to smile at some of the scenarios I act out: my partner’s daily jokes with a bookseller in Hanoi, and crossing the road – a life-threatening experience – in Ho Chi Minh City.

When she dozes, she holds my fingers tightly as if I am the force that is keeping her attached to earth. Each doze lasts only a few minutes. She keeps waking, checking that I’m still by her side.

A couple of the nurses we’ve come to know over the last few months pop in to see her.

‘How are you Jean?’ asks Jane, with concern. And we are both delighted by the genuine caring.

By afternoon, after a night in flight without sleep, I can barely keep myself in the upright position. It is only when, around 5 pm, I spot my brother in the distance and announce this to Mum, telling her I’ll go so she can have some time with her son, that she relinquishes my fingers.

That evening I talk to my partner.

‘No,’ I assure him. ‘There’s no need for you to come home earlier than we’d planned. Mum’s lost speech, but she’s not going to die. She’s not that bad.’

I say this for two reasons: first, because I believe it to be true, and second, because I had to buy a business-class ticket to get home. And I don’t consider that my mother’s condition warrants my partner doing the same. He can fly back to Singapore, as planned, and have a night there before returning.

‘No, just come home on Saturday night. It’ll be good to have you back then.’

Scared

Next morning, Wednesday, Mum recognises me, is able to say my name, and even smiles at some of my stories. With her limited speech, she can even articulate some of her emotions.

‘Scared.’

I can certainly understand that.

When a nurse asks her if she’s in pain she responds, ‘Boy.’

To most of the staff this is not a coherent response. However, when I ask, ‘Mum, do you mean, “Oh boy, I’m in pain”,’ she nods.

What I need to know is where my mother will go from here. And although tests are still being done, the 4.30 pm meeting with medical staff seems to indicate that I should begin looking for a high-care residence for Jean.

‘How am I ever going to manage that?’ I ask my partner during our long-distance evening phone conversation. There’s so few of those beds available, and between Christmas and New Year most of the high-care places won’t even have booking staff working.

Don’t be sorry

Today, Thursday, my mother has been moved to a single room. The grey blind is partially drawn. Mum stares out the window, as if not registering the world immediately around her; an oxygen mask provides a vital supply. No longer in her frilly pink nighty, the starchy white hospital gown is half on, half off. She mutters under her breath, reciting prayers to Jesus and Mary. Occasionally the words ‘Hear my prayer’ are audible.

Yesterday Mum recognised me, but today she glazes over as she looks out at the world I know, and I suspect she is preparing to leave it. All my phone calls this morning to secure her a high-care bed – as a doctor suggested I do last night – seem to have been a waste of time.

I’m shocked at my mother’s deterioration today. When the nurses comes to change her diaper, in a stern, reprimanding way, she bellows, ‘No, no, no.’

When the Catholic priest appears at the nurses’ station, I have tears in my eyes. Fortunately, Mum is on the list of patients he’s to visit today. He recognised her name because he’d visited her before at Lovely Gardens.

I stand back as he leans over the bed and gives my mother a blessing, making a sign of the cross on her forehead. (I think it’s the last rites.) The blessing and his approach are so soothing. Before he leaves, my mother props herself up on one elbow, and in a clear voice recites a prayer, one I’m not familiar with.

‘She must have learnt it as a child,’ the priest says, then leaves soon after.

Prayer seems to be the only thing my mother really responds to.

‘Mum, shall we say a Hail Mary?’ I ask – a prayer to the Virgin Mary, who Mum has prayed to every day of her life. And before I can take a breath, my mother begins galloping through it while I stumble over the final words, ‘Holy Mary, mother of God, pray for us sinners, now, and at the hour of our death. Amen.’

It’s a prayer I learnt by rote at school. Before today, those words held no special significance. Now, however, they resonate and reverberate. For close to one and a half hours Mum and I say a Hail Mary together every five minutes. And for one and a half hours I have to keep holding back tears. ‘Now, and at the hour of our death. Amen,’ my voice, charged with emotion, repeats.

Soon after 5 pm, when one of the medical team arrives, I ask about the latest CT scan, whether Mum is still bleeding in the brain. Apparently there’s a backlog of radiographer’s reports due to the Christmas holidays, so the report isn’t done yet. But it seems it’s no longer required. A plan has been worked out. In a meeting with the nurses, the doctors have decided Jean is to go into palliative care. The palliative care nurse will assess my mother tomorrow, and then contact me.

‘Palliative care,’ I say to myself, realising that the great survivor has very limited time left on earth.

5:38 pm. My mother has an attack of desperation, perhaps pain, and begins to thrash around the bed.

‘Gee, oh boy,’ she repeats and repeats, getting up on one elbow.

I help her put the line of oxygen back in place to assist her breathing.

‘Sorry,’ she says, ‘Michele.’

‘Mum, don’t be sorry. You’ve been a really good mum.’

‘Yeah,’ she says, a standard answer to questions and comments now.

5.43 pm. Mum tugs at her diaper. Realising she needs to relieve herself, I race out for a nurse, but there are none around. By the time they bring the commode it’s too late. So we go through another change. This time I assist and soothe my mother through it. It’s a better change than last time.

Whoever is in the next room is screaming. And they won’t stop. ‘Can’t my mum die in peace?’ I want to say. The next room is occupied by a dementia patient, and staff and family are struggling to subdue the distressed screams. It seems that in a public hospital, being allowed to die in peace is not a simple matter.

6.10 pm. I’m giving Mum a sip of orange juice through a straw. The nurse comes in with some crushed-up tablets. I suggest we cheat and put them in the juice. Mum laughs, repeats ‘cheat’ and smiles.

‘Your mum is much happier when you’re here,’ says the nurse, as I feed my mother small bits of mashed potatoes. However, all my encouragement only results in her swallowing five mouthfuls.

6.16 pm. Mum looks at her arms: the bruises and blotches, the freckles and the stitch marks from many surgeries.

‘Terrible,’ she says.

‘Well, that skin has served you well,’ I reply.

‘Yeah,’ she says, almost cooing.

6.25 pm. My mobile phone rings. I step out of the room to answer it. My cousin has some rosary beads I’ve been trying to organise for Mum, so we arrange for her to come in, visit my mother, have one last hug with her and drop off the specially blessed beads. When I return, my mother is asleep, propped up on two pillows, hands on her chest, oxygen supply on, mouth open. Suddenly she opens her eyes, stares towards one corner of the ceiling, then goes back to sleep.

6.36 pm. My mother is awake. Again, she stares at the ceiling, speaking and praying. Watching her is like watching someone more concerned with another world than the physical one around her.

For weeks I’ve been worried about how Mum can die when she’s so fearful of it. But today, she’s making that transition. My mother certainly has pain in her head, and there are moments of wanting to hang on, but there’s also a peacefulness. There is no longer fear of what beckons. She’s slowly slipping into the next stage of her journey. The one great journey which each of us must make alone.

The one constant

31 December 2010 9.30 am. It’s not officially visiting hours, but the staff don’t seem to mind as I head along the corridor towards my mother’s room. Mum is sleeping, the bottom row of her dentures almost resting on her lower lip. I sit beside her for a while, and then, seeing her relaxed state, decide to pop out to do some errands. I want to go for a swim, but when I arrive the pool is unex- pectedly closed. So my return to the hospital is earlier than expected.

Little do I know that hospital staff have been trying to contact me. However, they’re calling my partner’s mobile phone in Vietnam. And he’s desperately trying to locate me in Melbourne. All the information I’ve given the hospital – that I’m now back in Australia, to please use my home and mobile numbers – has not been effective.

As I walk towards the hospital, I receive an urgent message. The doctors want me at the hospital immediately.

‘Oh no, I’ve just been called to the hospital. This might be it,’ is the message I leave on my cousin’s mobile phone as I race towards the lift.

Denise, Mum’s good friend, has been sitting with Mum for over an hour. The medical team talk to me outside the room before I go in. I’m informed that Jean has had two convulsions in the last hour; that she has been given some medication to stop them, but they think today will be the day.

My mother has the picture of Mary on her chest and the rosary beads around her hand. The medical team, it turns out, are correct. Without any more turns, without any gasps, at 11.45 am, my mother dies. Her body is still warm, her hair soft, and her mouth open. But her life force is gone. Of this I am glad: Mum is no longer in pain. She’s now at peace. I hold her hand, talk to her through my tears, and run my hand through her hair.

‘Gee, how you used to drive me nuts sometimes. But you know, I really loved you.’

Denise quietly slips away as family arrive. I have managed to accompany Mum through the last part of her earthly journey. And now the one constant in my fifty-one years of life has departed.

EPILOGUE

An echo

Mothers’ Day, 2011 It’s a cool May day. Half the reddish-brown leaves on my ornamental grapevine have fallen, and the pear trees are full of red, orange and green leaves which will soon waft free of the branches they’re attached to. The streets and parks of Melbourne are lined with baring trees as if bracing for the onset of winter.

I arrive at an inner-city train station after my Sunday morning walk with friends around the Royal Botanic Gardens, just as the rain begins. The electronic sign indicates there’s only a four-minute wait for my train home.

‘Good,’ I think as an earlier train unloads its cargo of families dressed in pink T-shirts, all returning from the Mother’s Day Classic fun run.

Stepping out of their way, I wander along the platform and see a recognisable face beaming at me. It’s Jane, my mother’s favourite nurse from the hospital. She was generous to my mother, so caring, and such a good listener.

It seems fortuitous that today, my first Mother’s Day without my mother being alive, someone who really cared for her and enjoyed her character and her conversation should sit down with me on the train. Over the course of the ten or so stops that we travel together, we talk about our jobs, the fact that it’s just as important how you do things as what you actually do, Jane’s birthday, and the birth of what would have been my mother’s first great-grandchild (a 5-kilogram girl born to her second granddaughter) on Easter Sunday 2011, the marriage proposal by my partner three weeks after Mum died, and wedding plans.

Then Jane asks me about those last few days of my mother’s life. And, finally, I have the opportunity to express what it was like to accompany my mother as her mind and body began to close down; how much of a relief it was to see that she died without fear, as a woman of faith; and what an awesome experience it was to be there when she actually died.

As we say our goodbyes, I thank Jane once again for the generous care she gave my mother.

‘She was such a character,’ Jane replies, and then, just as I begin to sprint away in the rain, she adds, ‘I really loved your mum.’

Those words, not lightly spoken, echo in the air. It’s a beautiful, ethereal echo.

First anniversary

With one day left on our 12-day first-time-to-Fiji honeymoon trip, my husband and I began browsing in a Nadi department store. Photos aside, neither of us had a memento of our stay.

For me, scouring hangers and racks for sarongs or shirts is such an irksome chore that I soon find myself following a couple of Fijian women who have the knack of picking out the one thing in a stack of clothes that appeals to me.

‘Oh, this is great. I don’t have to go fossicking. I just watch what you pick out,’ I quip.

They laugh, and the modelling and the banter begin. The younger woman, in her twenties, has a tall, slender build; the other one is older, of solid stature.

‘You must have simple taste because you keep finding things I like,’ I say.

‘We have to,’ responds the older woman with a strong, assured, Fijian face, well aware of her fiscal limitations. By the time my husband has selected a red Bula shirt, I am able to introduce him to my new friends.

On the way back to our hotel, I explain that the women I met are Catholic religious sisters. My husband is curious to find out how I know this. Well, the younger one had a wooden cross around her neck, and there was something about them; they reminded me of religious sisters I met in El Salvador. And to satisfy my curiosity, I asked.

They’ve invited me to visit, and they live only a block from our hotel, so later that afternoon, I make my way to the community where the sisters live. Out the front of the school is a massive statue of the Virgin Mary, looking quite young. I can’t help thinking that my mother, who died almost one year ago and was an avid Virgin Mary fan, would enjoy this encounter.

When I knock on the door, Mary, the older sister I met shopping, welcomes me. (The younger one is off on an appointment.) After a tour of the school and the new church, we sit down for a chat. It’s the meeting of two travellers on a lifelong journey. And it doesn’t come to an end until we drink a cup of tea, and I meet her community.

Just before departing, I inquire if Mary or the sisters would be interested in a lovely bottle of brandy I brought with me from Australia but have hardly drunk. Brandy, I add, was my mother’s favourite drink.

As the response is a delighted one, the booty is soon handed over, and a request made. ‘Perhaps tomorrow, on the first anniversary of my mother’s death, you could say a prayer to the Virgin in honour of my mother, Jean, and maybe even have a sip of brandy.’ Request received. Request to be acted upon.

Next morning, before we leave Nadi for Australia, I return to the statue of the Virgin for a few quiet moments of remembrance. My parents had been to Fiji once, thirty years ago, when I won a trip there and gave it to them. Until then, they had never travelled overseas.

I recall they loved the hotel they stayed in. And only recently, as I sorted through my mother’s estate, I found the photos they’d taken in Fiji. There were photos of my parents with Fijians they met, and with a Sydney family who became lifelong friends.

When my husband and I checked into our hotel in Nadi the first night, I mentioned this was the kind of hotel my parents would have liked: lovely pool, and outdoor restaurant. It made me wonder if this was the place my parents had stayed. But the hotel name and the history I read didn’t seem to match.

It was only when were on our way to the airport for our departure that the taxi driver commented on the hotel we’d stayed in; how it used to be one of the best, and had been called The Dominion. The moment he said the hotel name, I knew it was the one my parents had stayed in. I could barely believe it.

On the first anniversary of my mother’s death, I had actually stayed in the hotel my mother had; met a religious sister she would have liked, one who appreciated her favourite drink – brandy; and had a few moments in front of a statue of the Virgin, whom my mother loved.

All was unplanned, and appreciated. And it made my mother’s first anniversary delightfully memorable, and so full of grace.

Writing

For the first three months after my mother’s death, my new laptop remained unused. I just couldn’t write. And it was only at my partner’s urging, in late March 2011, that it occurred to me to type up some notes. At the time I felt that if I were to splash paint on a canvas it would be thick, oily black for sure. Black, the absence of colour, would have been symbolic of an absence I carried like a burdensome weight.

Just over a year later, however, I notice a writing competition at work, for a short story with a 1000-word limit. That evening I search for the journal I kept while accompanying my mother, select the piece about the first aged care assessment and edit it to the required length, as a stand-alone piece.

The next week I send it to a publisher friend who writes back, ‘I loved that, Michele. I wouldn’t be surprised if you win!’ A couple of other friends also peruse the piece. All are effusive, encouraging and eager to read more. One colleague suggests I send it to The Age newspaper. But instinct tells me to hold onto it. Perhaps it may form part of a larger creative work.

Then, on Easter Sunday, after reading it around the dinner table to old friends of my partner, people I’ve never met before, and seeing the discussion it provokes – the father of the family is caring for two ageing relatives – it occurs to me that one day I might write more.

Finally, in September 2012, a writer who asked me to read and comment on his most recent manuscript spends an afternoon at my house discussing his inspiring memoir. As the afternoon begins to fade, it occurs to me to ask if I could possibly read him a few paragraphs of my own writing. ‘Certainly,’ he responds. After listening to vignettes about my mother’s fraying memory and her first official memory test, he responds enthusiastically in the imperative, ‘Just write it, Michele. Write the book!’

As I begin to review my journal, to imagine what the book might look like, it strikes me that I should write the kind of book I would have loved someone to give me when I set out, unexpectedly, and quite unprepared, accompanying my mother through memory loss and the medical maze.

I glance out through the eastern window of my study, and there, standing over 2 metres in height, is a beautiful Eucalyptus Silver Princess, its thin limbs gently moving in the breeze. It was the last present my mother gave me, almost two years ago. And only a few days ago, I discovered the first bloom – a cluster of three gumnuts on one of the dangling branches.

‘Yes,’ I think as I begin writing. ‘All things have their season.’

REFLECTION AND RESOURCES

By now you will have realised that the story you have just read is as much about the mother–daughter relationship, the intricacies of being a carer, and accompanying someone through the latter part of their earthly journey, as it is about Alzheimer’s disease. Stroke, cancer or any number of other medical conditions could easily have been the cause of my mother needing extra care from me and those close to her – and, later, residential care. It just happened that at eighty-eight years of age, Mum’s memory, like her heart valve and other parts of her body, began to wear out.

Accompanying the people we love can at times take us on a journey we would not choose. Let’s face it: dementia in general, or Alzheimer’s in particular, is not a choice. What’s more, as the prevalence of dementia increases (not just in Australia and the western world, but globally, and that includes countries like China and India) there is every chance that at some time in your life you’ll be touched in one way or another by dementia – if you haven’t been already. The story I’ve narrated and the information in this section arose from, and applies within, a particular Australian setting. Yet I believe it can be easily translated across state, territory or international borders.

Looking back over the journey, would I have done anything differently? Most certainly!

What I’d have done differently

I’d make sure my mother’s advance care plan was more extensive. For example, that it covered whether Mum wanted tissue/organ donation or not, and if she’d consider participating in research; and whether any treatment that might stop her dying naturally should be initiated or not.

I’d consult a specialist advance care planning service in the public health system to assist with developing Mum’s advance care plan.

I’d learn about how the aged care system works and the process involved in getting someone into residential aged care before needing to use it. I actually found talking to friends and family who were familiar with the system and its bureaucracy, as well as the social worker at the memory clinic, really useful. The National Dementia Helpline and the Alzheimer’s Australia information sheets (many are available online) and educational sessions are also excellent resources.

I’d find out which legal documents are required to access residential aged care. Then I’d have those legal documents, including those relating to guardianship, prepared years before they’re needed.

I’d have discussed the idea of paying someone Mum trusted to take her to some appointments when she was still living at home, or having some kind of professional or community carer as a back-up. This would have been useful even though Mum had always said she would go into an aged care home rather than be a burden on her children.

I’d contact the church community earlier, as the support of those women and the priest was wonderful. As Mum had been so active in the community, I learnt not to be reluctant about asking for help. And sometimes that help was as simple as a friendly face popping in for a cup of tea.

I’d get to an Alzheimer’s Australia course, about living with Alzheimer’s, with my mother.

I’d prepare a list of my mother’s assets, liabilities, utility providers and payment system for bills so that taking over her financial affairs was streamlined.

I’d perhaps reduce my workload as the scale of care Mum required increased. I recognise this would have been difficult: being employed on short-term contracts, arranging time off is not without the risk of losing your employment; and I didn’t know if the situation would continue for weeks, months or years.

I’d get a referral to a palliative care team, for added support and strategies, as soon as the medical specialist at the hospital suggested that my mother only had another six months to live.

What I wouldn’t change

My mother and I both respected each other, and enjoyed many precious moments in spite of the bureaucracy, the chaos, and the relentless logistics. Sometimes it was as simple as a shared silence sitting side by side in a waiting room; a smile on Mum’s face when I walked into her hospital ward; an enchanting story told by a district nurse; or even breaking into the same snorty laugh at the same time. Other times it was simply being present although I could not relieve her fear or pain.

Perhaps because I was not in the country when Dad died suddenly, I especially appreciated being with Mum as she slowed down, as her stoic independence gave way and she began to rely on me. I suspect I accompanied my mother in the latter part of her life as much for myself, not just out of a sense of duty, or the idea that Dad would have wanted me to, but because it meant so much to me.

Over the last few days of her life, I prayed with Mum, thanked her for being my mum, and was present as she took her last breath. It was so powerful, so full of grace. This experience, and the love I felt for my mother, is something I certainly wouldn’t change.

Conversations worth having

With an ageing population in Australia, and the number of people with dementia (including Alzheimer’s) in the hundreds of thousands, I believe that there are key conversations we need to have, as families, trusted friends, and as a community. (Naturally this is just as applicable to international readers.) And my view is that it’s best to begin those conversations long before any significant physical, mental or emotional wearing out takes hold, or before any unexpected event inflicts irreparable injury. Topics that might be worth discussing include:

a)  Have you thought about who you’d like to make medical, financial and lifestyle decisions for you, if you were unable to do this for yourself? On what basis would you choose that person, or those people? Do you think your substitute decision-maker is aware of your beliefs and values, or your medical preferences?

Furthermore, do you know what legal documentation is required to ensure your medical, financial and lifestyle wishes/preferences are made clear, in case you are unable to communicate them in the future? Please be aware that there is no uniform legislation within Australia for this legal documentation, so you will need to check the requirements for your state or territory. What’s more, the legislation is constantly changing.

Useful websites include:

www.start2talk.org.au

www.advancecareplanning.org.au

www.publicadvocate.vic.gov.au/about-us/197

www.myvalues.org.au

b)  If you were no longer able to live independently, what kind of care would you want? Do you expect to be cared for at home by family, friends and volunteers, or by paid carers? Would you consider going into residential aged care? Or do you have some other alternative in mind?

Finding out about the aged care system in Australia, how it works, and the products and services on offer, as well as the steps required to access residential aged care, is vital.

Useful websites include:

www.myagedcare.gov.au

www.agedcare.com.au

c)  Although end-of-life is a topic which some people find difficult, the reality is that in Australia many of us will die in an institutional setting – for example, in a hospital or in an aged care home. Furthermore, many of those who die this way will be unable to communicate their medical preferences at this time. In view of this, advance care planning, and appointing a substitute decision-maker, becomes so important.

Useful websites include:

www.advancecareplanning.org.au

www.start2talk.org.au

Resources

Useful websites

Alzheimer’s Australia

www.fightdementia.org.au

(you can then link to the Australian state/territory applicable to your needs)

There’s so much information here – very helpful fact sheets explaining what it is you’re dealing with it, how to develop strategies, tips for looking after the person with Alzheimer’s, and for caring for the carer. There’s a newsletter you can sign up to receive, stories and videos, news and events, as well as course and library information. (I found the library, and the staff who worked there, to be invaluable.)

Advance Care Planning Australia

www.advancecareplanning.org.au

This is an excellent website, with advance care planning information tailored to the state or territory you live in. There are links to booklets and information you may require, to the Office of the Public Advocate, and to health services in your local area which specialise in advance care planning. There’s a section on how to create an advance care plan, and stories and videos about people who have made advance care plans, and why they made them.

Start2Talk

www.start2talk.org.au

This site is full of useful planning information and tools, on a state-by-state basis, with links to local resources. There are many worksheets, covering planning for your future, starting the conversation, and communicating your wishes to others. There’s also a place for people to write their stories.

The Office of the Public Advocate (or its equivalent)

www.publicadvocate.vic.gov.au/about-us/197

This page is from the Office of the Public Advocate in Victoria. However, there are links to each particular state’s information and requirements. (The name may vary depending on which state/territory you live in.) There’s lots of information on the website about what legal documents you may need to get a person into care, and the process of making decisions for people who are no longer able to make them for themselves.

My Aged Care

www.myagedcare.gov.au

1 800 200 422

The website, established by the Australian government, is a good place to start when you want to understand the aged care system. It lists what sort of help and services you can get at home, gives advice about caring for someone, and provides information about aged care homes (including bonds and a fee calculator), and the steps involved in entering residential aged care, including aged care assessments.

Another Aged Care Website

www.agedcare.com.au

Another useful website for understanding the aged care system. You can search for aged care facilities and vacancies, as well as products and services.

Palliative Care Australia

www.palliativecare.org.au

This site offers information on palliative care. There are brochures to download, and key contacts are listed.

My Values

www.myvalues.org.au

A website funded by the Victorian Department of Health to help you figure out what medical treatment you would opt for in the later stages of your life. People around the world are invited to completed the questionnaire, and get a profile of their values and preferences.

Other resources

Your local general practitioner

A local GP can assist in the early stages of dementia, helping with diagnosis, accessing services, and developing strategies and support. Some also assist with advance care planning. Naturally, they deal with other health issues too.

The National Dementia Helpline

1 800 100 500

There’s nothing quite as reassuring as sharing your worries and concerns with a phone counsellor from this helpline. (I spoke to them a number of times.)

Go to talks, join a group …

Alzheimer’s Australia has regular information sessions and courses. There may also be groups or information sessions run by your local council, or neighbourhood networks.

People who’ve been through it

One of the useful resources is people in the community who have been through what you’re going through. You might be surprised how many people have been affected by dementia, directly or indirectly.

Documentation

Getting the paperwork right at the start can save a lot of unnecessary angst and work later on. Apart from powers of attorney and advance care plans (or their equivalent, depending which state you live in), here are some other useful documents. I found the dossier to be an excellent resource.

Dossier

A dossier containing an overview of the financial situation and assets of the person you hold the financial power of attorney for can be very useful. The dossier could include, but is not limited to, the following:

•   a list of assets

•   location of titles, deeds and insurance policies

•   bank, building society or credit union accounts

•   company share information

•   motor vehicle information, including registration and insurance

•   superannuation funds

•   debts due

•   monies owed

•   safe deposit

•   any other assets

•   date and location of the person’s latest will.

A personal profile page

Preparing a page of information about the person with dementia, including their likes and dislikes, their family and social history, and even their pets, may be most valuable. That way, in the event the person is moved into a residential care setting, they can receive more personalised care, tailored to their needs.

An international perspective

In August 2014, while preparing this section, I attended ICEL, the International Conference on End of Life: Law, Ethics, Policy and Practice, in Brisbane, Australia. Hundreds of delegates from around the globe descended on QUT, Brisbane for the event. Although not a medical or legal professional like most attendees, I found it illuminating.

It was through this conference that I began to realise how many of us around the globe, in a professional or familial capacity, or both, are affected by dementia. And listening to international delegates, I began to believe that different models of care, not just the one my mother experienced – living in residential aged care, and dying in hospital – are possible. It seems to me that’s a topic which needs further exploration.

www.advancecareplanning.org.au

you can also find international contacts and links, and information on training, and international conferences.

Michele’s website and blog

www.michelegierck.com.au

From time to time I will add a page of discussion questions, in relation to caring for someone with Alzheimer’s, to my website. These discussion questions may be useful for book clubs or community groups.

www.michelemuses.wordpress.com

At this blog, you’ll find pictures of many of the garden scenes described in Fraying, as well as a range of reflections. (After Mum died, I found myself spending a lot more time in the garden, pottering about.)

ACKNOWLEDGEMENTS

Morag Fraser once told me that when people read, they like to discover what they do not know. With Fraying, however, you will find out how much I did not know, and how I set about – obsessively, some might say – exploring, searching and navigating my way through the aged care system.

I suspect you will also have noticed that the specific names of hospitals, clinics, aged care homes and their staff in the book were changed. I thought focusing on the story and the issues raised, rather than naming individual clinics or staff, often working under the weight of burdensome bureaucracy in what appears to be a sagging aged care system, was the best approach.

During this unexpected journey, as I accompanied my mother, my journal became one of the few places I sought refuge — a special space where I could immerse myself and my soul.

Turning that journal into a book, however, was quite a task, even though that exercise is one I’m familiar with. Fortunately, I had some excellent collaborators. So there are many people I’d like to thank, particularly for their help in the early days of this project. Some were simply readers – Lucia, Lisa, Faye, Peter, Therese, Nancy, Rosemary and Jane – and their positive comments were encouraging. Others had the more difficult task of offering constructive comments on part or all of the narrative: Elizabeth Walker, Leanne Bishop, Sue Mackey, Stuart McDonald, Graeme Sparkes, Martin Flanagan, and staff at one of the memory clinics.

Joanna Dellit, nurse consultant from Peninsula Health, and Stroma Mauritzen, the librarian from Alzheimer’s Australia in Melbourne, gave invaluable assistance when it came to writing the ‘Reflection and Resources’ section. I remain so appreciative. (Any errors, however, are mine.)

What great fortune I had working with Phillipa McGuinness, the publisher at NewSouth Publishing, and her team. (Thanks to my literary agent, Debbie Golvan, for arranging this.)

The one person, however, who was with me through the whole project, from living the experience to writing the book, was my other half, now my husband, John. So often his humour, his lateral thinking, his great appreciation of the earth and the plants and creatures in it, kept me grounded. Without him, his love for Mum and me, his encouragement and his excellent editing skills, the journal might have remained in a cardboard archive box, tucked away in a deep, dark cupboard.

I think my mother would have enjoyed part of her story being told, particularly with the added suggestion that it may assist others. (Hopefully it does.) And, if she were alive, we certainly would have celebrated publication with a brandy – or two.

Michele Gierck