The Little Girl in the Radiator: Mum Alzheimer's & Me (24 page)

THE GEORGE ELIOT is the main hospital in Nuneaton, and is named after the Victorian novelist who was born in the town. I liked the place
because the wards have names and not numbers; I have come to feel that if they
bother to name the wards, then they are more likely to see the patients as
names, too – that is, as real people. If the wards merely have numbers then so
do the patients, and they end up being processed like so much impersonal data.

We pulled into the car park of the Accident
and Emergency section, and went in.

‘Can I help you?’ asked the receptionist,
smiling at me.

‘We’ve come to see Mrs Slevin, she was
admitted today,’ said Heather.

The lady nodded. ‘The doctor will be with
you in a moment. If you go through those doors to the left and take a seat in
the relatives’ waiting room, he won’t be long.’

We followed her directions, took a seat and
waited.

‘This can’t be good news,’ I said.

‘Wait until we hear what the doctor has to
say,’ Heather replied, sensibly.

The doctor came in. He was young and
fresh-faced, he had a confident air about him, and he smiled broadly at both of
us. We shook hands with him, and he closed the door, and sat down.

‘Mrs Slevin’s notes from Walsgrave Hospital haven’t arrived here yet, so I don’t know anything about this lady’s medical
history,’ he began. ‘I wanted to speak to you first. What can you tell me about
her?’

We relayed mum’s history as best as we
could, from the time of the previous stroke at Charnwood House up until a few
days ago when Heather and I had gone to the coast.

‘I see,’ he said when we had finished. ‘Mrs
Slevin has suffered a second stroke. That often happens when the first stroke has
been severe. We have admitted her on to Alexandra Ward, and you will be able to
see her, and stay with her as often and for as long as you wish. Don’t feel you
have to adhere to the posted visiting times.’

‘It doesn’t look good then?’ I asked.

‘Your mother is extremely ill,’ he said.

We nodded.

‘What can you tell me about the nursing home
she has just come from?’ he asked.

‘Not a lot, really,’ I said. ‘She only just
moved in there a few days ago. She was in Walsgrave for about 10 weeks before
that. Why do you ask?’

I had the strangest feeling there was
something he wasn’t telling me.

‘She was not admitted in a favourable
condition,’ he replied. ‘The nurse who first admitted her commented on her
condition.’

‘What do you mean?’ asked Heather. ‘What
condition?’

‘The admitting nurse wrote some comments in
the admittance book, which is a very unusual thing for a nurse to do. I think
she was covering herself.’

‘I still don’t understand,’ I said. ‘What
was mum’s condition when she arrived here?’

‘I didn’t see her personally,’ he said, ‘but
the notes written by the admitting nurse state that she was covered in faeces.
Some of it had dried onto her legs, and looked as though it had been there for
some time. There was also dried faeces under her fingernails, again indicating
that she had not been washed in some time. Also the feeding peg on her stomach
was caked in dried blood, again indicating a lack of personal care.’

I thought I was going to be sick.

‘I’m sorry to have to tell you this,’ he
said. ‘You can go through and see her now.’

He stood up, shook hands with us again, and
left us alone. We sat together in stunned silence. While Heather and I were
enjoying ourselves at the seaside, mum had been neglected in the home to which
we had entrusted her. They hadn’t even bothered to keep her clean; even her
basic personal hygiene needs had been neglected. I felt a rage begin to rise up
inside me that even now I can hardly explain or contain. We went onto the ward
in silence.

Mum was lying on a bed as we expected. Her
skin was a pale grey colour, and her hair was a mess. All the immediate and
obvious signs were bad, even to a layman like myself.

NIL BY MOUTH had followed her, and it hung
again over her head in plain black text on a white card; a message of
instruction, like NO SMOKING, or EXIT.

She had a tube again running from the back
of her hand up to a saline drip, and another running from a liquid feed bag, to
the newly cleaned, and sanitised peg in her stomach. A machine to her left
monitored something critical as its little green line rose and fell with her
heartbeat and breathing, and she gasped for breath once again through a blue
plastic mask, which covered her nose and mouth.

I felt so sorry for her.

As we stood by her bedside, her eyes slowly
opened, and she looked at me, but there were no signs of recognition there, and
no smile followed the stare. I got the impression that mum knew someone was
standing beside her, but she had no way of telling who that person was, or in
what capacity they stood in relation to her. She simply looked at me, and then
looked away.

‘Hi mum,’ I whispered, and kissed her gently
on the forehead. ‘How are you feeling?’

She turned her head to look at me again,
gave me the same quizzical stare, and then returned her gaze to the ceiling.

I brushed her hair away from her face with
my hand, and her forehead felt cold and clammy.

‘Hello, Rose,’ whispered Heather gently,
bending over the bed. ‘You’re in hospital, in Nuneaton.’

Mum turned her eyes to look at Heather, but
there was no sign of recognition in them at all. She opened her mouth to speak,
and a faint, strangled gasp came out. It was barely audible, and then it faded
away into silence, even though her lips continued to move for the next few
seconds.

This was the last attempt at audible
communication my mother ever made; the latest stroke had effectively killed her
powers of speech.

I thought how sad that was. She had always
loved to gossip and chat – she’d spend hours with her neighbours and friends,
just passing the time in joyful conversation. Even during her time in Charnwood
House, when the things she said to us made no logical sense, she was still able
to enjoy the ebb and flow of the banter, and participate in the conversation.
This had allowed her to remain connected to the world, even if that world was
confusing and even frightening. The cruelty of Alzheimer’s disease increases
proportionately as its grip intensifies. As the time passes, it robs its
sufferer of more and more of their natural faculties, until it renders them down
to a shell, a hollow husk of wheat, with the vitality and substance that once
made them whole blown away on the ever-strengthening breezes of dementia.

This was the beginning of a period that I
can only now come to describe as The Long Wait.

* * * * *

We came to mum’s bedside almost every
evening for the next three months, and we waited. Exactly what we were waiting
for is hard to define in retrospect. Maybe it was for some small sign of
improvement, although I think we both knew in our hearts that the situation was
hopeless. If there had been no sign of recovery after the first stroke, how
could we honestly expect one after the second? Maybe we were waiting for the
medical staff to give us some concrete assurance that there was either hope, or
no hope at all; they could give us neither. Maybe we were waiting for mum to
fail at last and to pass away. Or maybe we were just waiting for something to
change; it hardly ever did.

In the first week I again took more time off
work than I was really due, and slept most nights in the chair by mum’s
bedside. She lay there on the bed like a statue, coarsely gasping for each and
every breath through her oxygen mask. I would fall asleep for a while, but any
slight change in the rhythm of her breathing would immediately awaken me again
and I would stare at her for a sign of life. Her breathing would then resume
its staggered tempo, and I would fall asleep again, only for the whole process
to repeat 20 minutes later. This cycle recurred I don’t know how many times
throughout each night, and, at the end of the first week, I felt that either I
would have to go home to my own bed, or the nurses would end up getting me a
bed in the ward as another patient. So I went home.

We came back every evening and waited.
Nothing changed.

Slowly, over the course of the first month,
the nurses said that mum was beginning to need the oxygen mask less and less,
and eventually they removed the mask altogether and allowed her to breathe
unassisted. A red mark had appeared across the bridge of her nose where the
mask had rested.

Over the second month her body weight
increased very slightly, and her skin lost that tragic pale grey colour, as a
pink sheen returned to her face. This one single change in the colour shading
of her facial skin made her look five years younger, and a whole lot healthier.

Over the course of the third month, she
began to focus on the world again. She would open her eyes and look about the
room. She would seem to take an interest in her surroundings, and, although she
never spoke again, she did seem to appreciate what was happening around her.
Mum would look about the room at the comings and goings of the staff and the
visitors. She would occasionally glance at me, but there was no recognition
behind the glance, it was just a glance, nothing more. She would look over to
the radiator though, and smile. Only mum, Heather and I knew why, and the
little girl’s secret was safe with us.

Towards the end of the third month, another
consultant spoke to us.

‘There is very little more we can do for
your mother here,’ he said. ‘I am sorry to put it so bluntly, but we do need
the bed space now, and I think your mum would be better off in a nursing home,
sooner rather than later.’

It was time for mum to move on again. She
was like a geriatric gypsy.

The social worker got in touch with us
again, and said that mum would need a new place to stay.

‘She’s not going back to that hellhole she
was in before,’ I said. ‘They didn’t even understand the first thing about
personal hygiene.’

‘Of course not,’ she said. ‘I’ll find you
somewhere else.’

‘No, I’ll do the finding,’ I said. ‘After
our experience with the last place, I’m not going to be rushed in to sending
mum anywhere I haven’t checked out properly first.’

‘Well, time is short, Mr Slevin,’ she said, her
voice had lost its self-assured quality by now.

‘No, it isn’t,’ I said. ‘I won’t be
pressured, either. I’m going to contact all the nursing homes in the area, and
then I’ll visit them one by one, and when I’ve made my choice, then I’ll agree
to have her moved, and not before. And if they don’t like that here, because
they have to keep her for a few weeks longer, then tough luck.’

‘Oh, yes, you’re right, of course,’ she
agreed, and that was the end of the conversation.

No matter who I upset, no matter whose
schedule I disrupted, no matter whose plans I spoiled, I knew my mother wasn’t
going into another nursing home that I hadn’t checked out thoroughly. And if
that took time, then it took time; people would just have to get used to it,
and make other arrangements. I knew she was well looked-after where she was,
and I was in no hurry to move her again, no matter how short they were of bed
space.

I USED THE INTERNET and the local
telephone directory to make a list of all the nursing homes within a 10-mile
radius of where we lived.

There were 72. A lot of them had their own
websites, and by calling some, and emailing others, and viewing others online,
I was able to establish how many were able to take bedridden stroke patients
with dementia. This reduced the prospective homes to about 20. I called all of
those and asked if there were any current vacancies. This dropped the number to
six. By making enquiries with these, I found a clear favourite, and I asked if
I could call in for a visit.

Heather and I set off the next Saturday
morning, and we were welcomed with a warm smile and the chance of a cup of tea.

‘The kettle’s just boiled,’ said Steve, the
head nurse.

I have always believed in first impressions
about people, and I think I have been right more times than I have been wrong.
I liked Steve the moment we met, he smiled in a very natural, unaffected way,
and somehow I just knew he was good at his job; he made a great cup of tea at
the drop of a hat, too.

He took his time showing us around; there
was no hurry, no rushing from room to room, and he made no effort to disguise
the home’s less than adequate paintwork.

‘This place used to have a bad reputation,’
he said. ‘The people who ran it were more interested in the money than they
were in the people. They never spent a penny on the place.’ We looked at the
faded paint, peeling off the walls in patches here and there. ‘But they’ve gone
now, and I’m going to turn it around,’ he said.

I could tell he meant it.

An elderly couple passed us in the corridor,
a man in his 80s, I’d say, and a woman in her 90s; they were each on Zimmer
frames, but they seemed to be racing, and they were laughing and joking with
each other as they inched into the day room.

‘The damn programme will be finished by the
time we get there!’ said the old man, and the woman screeched with laughter.

‘The whole place needs re-decorating,’ said
Steve. ‘I’ve applied for the funds to have it done. But I promise you your mum
will want for nothing here, she will be well looked-after.’

He looked me straight in the eye as he
spoke, and I believed him. It’s not paintwork that makes a home successful,
it’s the professionalism and dedication of the people who work there. The most
beautiful décor means nothing if the staff don’t care. This place was a bit
run-down, but it had people like Steve in it and that made all the difference.

‘What kind of music does she like?’ he
asked. It was a question I had never been asked before by anyone at any nursing
home.

I smiled, as I thought about the Irish band
at home. ‘She likes Irish band music,’ I said.

‘I have a spare music centre in the closet,’
said Steve. ‘I’ll find her a tape, we can set it up in her room.’

I was touched. It was this kind of little
inexpensive thoughtfulness that made a proper home.

When Heather and I left, we both felt
certain that this, at last, was the right place for mum. We chatted
light-heartedly all the way home in the car, sure and certain we had made the
right decision.

She was discharged from George Eliot on the
Wednesday of the following week. On the Wednesday evening, Steve called me.

‘Your mum is settled in fine,’ he said. ‘I
put that spare music centre into her room, and I’ve got her some Irish music
tapes. She’s listening to them now. She’s really enjoying them, she’s smiling a
lot.’

I felt a lump come into my throat.

‘Thank you so much, Steve,’ I said. I was
genuinely grateful.

Four days later, he called again.

‘I’m sorry to tell you that your mum has had
another stroke,’ he said. ‘She’s been rushed back to George Eliot. She’s in
intensive care there. I’m
so
sorry.’