The Little Girl in the Radiator: Mum Alzheimer's & Me
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Authors: Martin Slevin
© Martin Slevin, 2012
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The Little Girl In The Radiator
The House With The Green Kitchen Floor
To my two children, Rebecca and Daniel, who
just thought their grandmother was crazy but loved her anyway.
And to Heather, who helped me cope when no-one
else could.
Also to all the family members of Alzheimer’s
patients out there; you’re not alone.
To my Dad.
And lastly, but mostly, to my Mum.
All that follows is true.
I SHOULD make it clear right at the outset
that I have no formal medical training. I can stick a plaster on a cut finger,
but that’s about it. Everything I know about dementia, and about Alzheimer’s
disease in particular, I have either read in books or online or seen for myself
at first-hand, as it were. The observations, comments, and conclusions I make throughout
this book are my own.
In modern Britain, more money is spent on
launching a new aftershave than on researching Alzheimer’s disease; although
we’d all like the male population to smell nice, I think we would also want our
parents and grandparents to experience a quality of life during their dotage
which is currently denied them through medical ignorance.
Some names and details of the care homes my
mum went to have been changed for legal reasons, but the details of how she
suffered in the first of them are absolutely accurate.
Rose Slevin, mum, as a young woman in 1945.
Rolling Up The Rug
ALZHEIMER’S DISEASE IS the only medical
condition that I know of which affects the family of the patient more than it
appears to affect the patient themselves.
The long tentacles of its colourful
fantasies reach out in all directions at once, touching, clawing, caressing and
embracing all who pass within their reach, until each is drawn into the
labyrinthine tragedy and made to become an actor in the drama. While all of
this is going on, the patient continues to move through their own little world,
interacting with all of its colours, contours and characters as though nothing
had happened or changed, blissfully unaware of the emotional turmoil they are
causing in the outside universe.
If you break your leg, it incommodes you.
You
sit at home in plaster;
you
suffer and
you
deal with it: it’s
your
problem. Your family members may be slightly inconvenienced, inasmuch as they
will fetch and carry for you, but that’s about the extent of their forced
participation in your altered condition. With Alzheimer’s, it’s the other way
around. If you have Alzheimer’s disease, it becomes everyone else’s problem;
you behave as though nothing has changed, while everyone around you has to cope
with your radically altered mentality.
‘It’s like rolling up a rug,’ said the
consultant. My mother and I were sitting in the Caludon Centre, at Coventry’s Walsgrave Hospital, where she had been referred by her GP. He had suspected
the onset of dementia when mum went to his surgery to complain about a little
girl who was living inside a radiator at home, and who was whispering to her
the most disturbing things about other members of our family. When the
receptionist at the surgery heard this she had sent for the doctor, who had
come out of his consulting room into the main waiting area to find mum causing
mayhem among his other patients; she was climbing on one of the chairs and
trying to take down his curtains, because they were too short and didn’t reach
the windowsill.
Now, the specialist looked across his desk
at me and ignored my mum, who was sitting next to me, apparently unaware that
she was being discussed at all.
‘Imagine you’re standing at one end of a
long carpet,’ he said. ‘The end nearest to you represents the present, and the
other end represents your mother’s childhood. As we begin to roll up the rug,
the memories inside the roll are erased and lost forever, and her reality slips
backwards in time. The more we roll up the rug, the further back in time she
has to travel to find a point in her life that she remembers.’
I nodded slowly, trying to understand. My
mother looked at his burnt-orange curtains with a disgusted and professional
eye. They were tatty and frayed, and had probably hung on the window for years.
I knew she was thinking about how she could run up a much nicer pair for him in
no time at all. In fact, I was waiting for her to ask him for the job.
‘I want to ask your mother a few simple
questions,’ he said, finally looking at her.
She smiled back at him, amiably.
‘What year is it now, Rose?’
My mother began to frown.
‘Now that’s a hard one,’ she replied. ‘Let
me think. Is the war still on?’
The consultant smiled. ‘Do you mean the
Second World War?’
Mum nodded.
‘No, that ended in 1945,’ he said. ‘What
year is it now?’
‘Then it must be after that,’ she replied.
‘It’s 2002,’ he said.
‘Yes, that’s right,’ said mum, who would
have agreed if he had said it was 1812, and Napoleon was running France.
I squeezed her hand gently, and she turned
her head towards me and smiled.
‘I am going to ask you to remember a few
things, Rose,’ he said, ‘and then in a few minutes I will ask you to tell me
what those things were. Is that okay?’
‘Yes, that’s okay,’ said mum, looking back
at him, and smiling.
‘A pen, a newspaper, a pair of scissors, a
clock and a pair of shoes,’ he said slowly.
Mum nodded confidently.
‘Who is the Prime Minister today?’
‘Margaret Thatcher, the milk snatcher!’
announced my mum, triumphantly.
As Minister for Education – before her
election as Prime Minister of Britain in 1979 – Mrs Thatcher had been seen as
being responsible for the ending of free school milk for Britain’s children.
‘No, it’s Tony Blair at the moment,’ replied
the consultant.
‘Oh, I see,’ said mum. ‘I don’t like him.’
‘What month is it?’ asked the consultant.
‘April!’ said mum, with some certainty.
‘No, it’s August,’ said the consultant.
‘Yes, that’s right,’ said mum.
‘Now, I want you to tell me, Rose, the list
of items I gave you to remember a few minutes ago. Can you recall them?’
‘Yes, I can,’ she said. ‘A pair of
scissors.’
‘Very good.’ The consultant was nodding.
‘A bicycle, a fur hat, and a box of
chocolates!’
Mum looked very pleased with herself. The
consultant had stopped nodding.
‘I think we need to do some more tests,’ he
said.
* * * * *
There is no way of proving it now, but I
am convinced that my mother’s dementia began the day my father died. I believe
the shock of his death somehow triggered the Alzheimer’s condition in her.
My parents were married for over 50 years,
and they were never apart during that time. Each was the other’s right arm. My
dad had undergone a triple heart bypass operation 15 years before; it gave him
another decade and a half of life, but his health was broken. Slowly, very
slowly, he had become an invalid; in the last year of my father’s life, my
mother had nursed him like he was a sick child, and, even though it was seen
coming a long way off, when death finally arrived she went into shock.
My parents were from Dublin; they had met
and married there, and I was born in Ireland at a time when work and money were
scarce. The family story goes that, in 1961, when I was four years old, the
three of us were in the market in Dublin, and I asked for an apple. Mum
rummaged through her purse and found she hadn’t enough money.
‘It’s come to something when I can’t even
afford to buy my son a bloody apple!’ said my dad, and within a week we had
emigrated to Coventry. These days, like most places, it’s struggling a little,
but back then it was a thriving engineering city, the home of Jaguar cars –
where my dad worked – Massey Ferguson tractors, the black London taxi and lots
of other household names.
My mum was a talented seamstress, and she
started a little business in our two-bedroomed bungalow, making curtains and
matching bedspreads to order for people she knew. As word of her work spread,
her orders increased, and my father built her an extension out into the back
garden. This workroom was her world for the next 20 years: I can hardly recall
a time when she wasn’t back there, cutting, stitching, hand-sewing or measuring
material. Hundreds of different coloured threads stuck out of the walls on
little dowelling racks which my dad had made for her, and a long worktable and
three industrial sewing machines completed her little factory. I mention my
mother’s sewing now as it explains her interest in her doctors’ shabby old
curtains, and becomes more relevant still later on.
The months leading up to and following my
dad’s death were difficult. During the same period, my own marriage was coming
to an end, which was why I found myself, a year after he’d gone, sitting in my
mum’s kitchen and telling her I was going to move back in with her.
‘Oh, that would be lovely!’ she cried. ‘But
what about your wife, doesn’t she mind?’
‘We’ve split up,’ I said, simply.
My mother looked at me vacantly; she didn’t
seem to understand what I was saying.
‘Is she coming to stay, too?’
‘No, we’ve separated, mum,’ I said. ‘We’re
going to get a divorce. Rebecca and Daniel will continue to live there, and
I’ll move back here. I mean, if that’s all right with you?’
‘That’s great!’ she announced. ‘We can have
tea together every day!’
For various reasons I’d not visited mum that
often – once a week or so, and only then for a short while at a time – so I
hadn’t really seen the dementia ebbing and flowing through her mind like a
slowly rising tide. But as I sat there, I realised that she was now noticeably
worse than when we’d visited the consultant at the Caludon Centre a few months
earlier. I moved back over the next day or two, filling the bedroom of my
childhood with the remnants of my married life. Once I was ensconced, mum’s
decline quickly became more apparent to me.
I remember getting out of the shower one
morning as I was preparing to go to work – at the time, I was a c
ommunity
warden for Coventry City Council
. I stepped from the shower
cubicle onto the mat in the bathroom and reached over to take a fresh towel
from the rack. I was surprised when it just fell away into a series of
perfectly cut strips – about 12 of them, all exactly the same width, each
running the full length of the towel, and all laid back on the rack in perfect
symmetry, one beside the other, like a row of soldiers on parade. As I would
later learn, it is a characteristic trait of the victims of Alzheimer’s
disease, and dementia generally, that they continue obsessively to carry out
once-familiar physical tasks, perhaps in an attempt to anchor themselves in the
strange and unfamiliar new seas of their lives. In mum’s mind, she was still at
work, still cutting material to make curtains and bedding. It took me a long
time to understand that.
‘What’s happened to this towel, mum?’ I
asked, standing in the hall naked and dripping with water, and holding up the
perfect strips in either hand for my mother to see.
‘I don’t know,’ she called back from the
kitchen. ‘What are you asking me for? It must have been Peggy. Ask her.’
‘Peggy who?’ I replied.
‘Your aunt Peggy, of course,’ she said.
‘She’s always doing things like that.’
‘Mum,’ I said, softly, ‘Aunt Peggy’s been
dead for five years.’
‘She is
not
!’ insisted my mum. ‘I
spoke to her only yesterday. What are you saying things like that for?’
I thought about what the consultant had
said... The rolling up of my mother’s mental rug. If mum believed my aunt Peggy
was still alive, then she must be living in a time at least five years in the
past.
I found another towel.
* * * * *
Over the next two or three years, mum’s
decline was gradual, but inexorable. It wasn’t just her mental faculties: she
was fading away physically, too. I didn’t notice this at first, but in late
2005 I suddenly realised that she was getting very thin.
She had always been petite, and had never
put on weight despite having a good appetite. I think she lived on nervous
energy most of her adult life – she never did fewer than three things at a
time. She’d be out in her workroom making curtains or something, for instance,
and would keep popping into the kitchen to peel a bowlful of potatoes for the
family dinner, and dashing off a few lines of a letter to someone. (She was a
compulsive letter writer, of which more later.) Then she would return to the
workroom and carry on with her curtains. So she simply burned off whatever
calories she consumed.
Now, I noticed, she was getting seriously
thin. Clearly, I needed to get her eating properly. I decided to cook her a
decent meal, and opened the cupboards to start rooting around for ingredients.
Every packet, tin and box of food in the kitchen was months or even years out
of date. She’d been less than assiduous in restocking the kitchen cupboards
since my father had died.
‘All this stuff is way past its best, mum,’
I said, rummaging in a drawer for a roll of black bags.
She sat with her head in her hands and
watched me empty all the old tins and packets into the bags for the bin men to
collect on Thursday.
‘You’re going to starve me to death,’ she
sobbed. ‘Wait until your father gets home. He’ll have something to say about
this!’
She used to say that to me when I had been a
naughty child, and it still made me feel uncomfortable. Dad had always been the
one to punish me, to stop my pocket money, to send me to my room. I suppose I
was a handful as a kid, and I always seemed to be waiting for him to come home.
‘You can’t eat this stuff,’ I said. ‘Half of
it would give you food poisoning.’
Mum shook her head. ‘Your father won’t be
happy.’
‘Dad’s dead, mum,’ I replied, bluntly. Too
bluntly.
She looked at me with disgust in her eyes.
‘How could you be so cruel as to say that to
me? When I think of how much your father loves you, and all the things he does
for you.’
‘I know all that, mum, and I loved him too.
But he’s dead now, don’t you understand that?’
