The Little Girl in the Radiator: Mum Alzheimer's & Me (23 page)

‘But because it is an operation, even a very
minor one, we do need you to authorise the procedure, as the next of kin, as it
were.’

We nodded again.

‘Any questions?’

I felt like asking him why nobody ever
answered the telephone, but I knew that wasn’t the sort of thing he had in
mind.

‘There doesn’t seem to be much improvement
since the stroke,’ said Heather.

He shook his head. ‘No.’

‘What’s the long-term prognosis?’ I asked.

He took a deep breath. ‘It’s difficult to
say with any degree of certainty. We can make your mother comfortable at
least.’

‘It’s not good, though is it?’ I asked. I
wanted someone to give me a straight answer.

He shook his head again. ‘No.’

We shook hands and he left.

Mum had the peg fitted the following week,
and was fed through a tube for the rest of her life.

During this time there was an outbreak of
MRSA at the hospital. In an effort to combat this, the hospital authorities
restricted visiting time to only one hour in the evenings, from 7pm to 8pm.
This caused huge traffic jams in the car park both coming in and going out, and
added to the general frustration felt by most relatives when they finally
managed to arrive at the hospital.

I remember on one occasion arriving at 7pm,
only to have to queue up in the car park for 20 minutes so that I didn’t
actually arrive on the ward until nearly 7.30pm; half my time with mum was
already gone. I hadn’t been at her bedside for five minutes when two young trainee
nurses arrived, announced they were going to give mum a bed bath, and asked me
to leave the room. This had happened once before and I had reluctantly agreed.
By the time they had finished, I had five minutes left of my one hour. This
time I would not comply so meekly.

‘Hold on a minute,’ I said. ‘I only get one
hour a day here. Why do you have to bathe her in my one hour? Why can’t you
give her a bath after visiting time?’

The request seemed reasonable to me.

‘We have to do things to a schedule,’ one of
them replied.

‘Not tonight, you’re not,’ I said. ‘You have
her 23 hours a day, I have her for one. Bathe her in your time, not in mine!’

‘I’ll have to speak to my supervisor,’ she
replied.

‘Speak to who you like,’ I said, firmly,
‘but don’t come back until after I’ve gone at eight o’clock!’

They gave me an injured look and wheeled the
trolley away. Word must have gone around about me, because they didn’t come
back, and no-one ever bothered me at visiting time again. Before mum became
ill, if I had ever felt that my rights were being infringed in some way, I
would generally say nothing: better to have a peaceful life. Now, when it’s
justified, I complain, all the time, about everything, to everyone, and I
always win. When you’re forced to fight someone else’s battles for them because
they are helpless, it makes you more assertive and determined to redress
injustices.

Mum stayed in Walsgrave for the next 10
weeks with no visible improvement at all. Her swallowing reflex never returned,
nor did the movement of the left side of her face or body. Her ability to speak
was also severely impaired, to the point where it became impossible to
understand a word she was saying.

Towards the end of June 2007, a member of
staff from Charnwood House came out to the hospital to assess her condition. It
was decided that as the stroke had left her bed-ridden, and she required
full-time nursing care, Charnwood would not be able to have her back. They were
sorry, but they simply didn’t have the facilities to cope with someone in mum’s
condition.

They asked us to call in to collect mum’s
personal things. It was time to find somewhere else to take her.

THE SOCIAL WORKER had re-established
contact with us, and we told her that it would be more convenient if mum could
be placed in a nursing home nearer to where we now lived. She told us that
should not be a problem, and said she would come back to us with a list of
suitable places for us to visit in a few days.

She came back with just one. ‘There’s a
shortage of beds at the moment,’ she told us. Once again, it was take it or
leave it.

We decided to go and have a look the
following weekend. It wasn’t all that far away, and as we pulled up outside I
was pleased with what I saw. Nice flower beds, no litter on the ground, the
windows were clean and sparkling: it gave a good first impression.

‘Looks nice,’ observed Heather, as we made
our way towards the front door.

The door was opened by the manageress; she
wasn’t pleased to see us. ‘I’ve only just been told you were coming,’ she said,
testily. ‘I should have more notice than this.’

‘I’m sorry about that,’ I said, although I
hadn’t made the appointment so I had nothing to be sorry about.

‘Not your fault,’ she said, softening.
‘Social Services again.’ She waved her arm along the corridor. ‘Go through.’

We found ourselves in a gloomy corridor with
a dark red, faded carpet, and cream walls on either side that could have used a
fresh coat of paint. There were small plastic vases dotted here and there,
sprouting equally plastic flowers with dusty petals.

‘We have two rooms available,’ she said.
‘Follow me, and I’ll show them to you.’

She marched down the corridor, swinging her
arms as she went, without once looking back. I wondered if she had ever been in
the army.

‘This one,’ she announced, standing aside
and pushing the door open.

We stepped meekly into the room. It was like
a prison cell. There was one table, one chair and one bed, and no other
furniture at all. It was painted in 1960s surgical green, and the whole place
smelled of disinfectant. Outside the ground floor window, some thoughtful
architect had pencilled in the perimeter so that the only view any poor,
bed-ridden patient would have for the rest of their days was of a big, red
brick wall. My heart sank.

‘Follow me,’ she announced, and marched off
again before we could even talk about it. We followed her back down the
corridor.

‘And this one,’ she said, swinging another
door open.

This was slightly better. The view from the
window was of a small grassed area, with a rose bower over a small fish pond.
Otherwise it was the same as the other, apart from one slight difference: there
was a little old man in the bed.

‘Don’t mind him,’ she announced loudly.
‘He’ll be gone tomorrow.’

For one horrible moment I thought she meant
he was going to die in the morning.

The little old man looked over and smiled a
toothless smile at us.

‘Aren’t you, Ted, going tomorrow?’ she
shouted.

Ted managed a wave and then fell back on the
bed.

Heather and I looked at each other. I don’t
know which of us was the more horrified, or dumbstruck.

‘Which do you prefer?’ asked the manageress.
‘This one’s got the better view.’

‘Where is Ted going?’ I said. I had to ask
it.

‘Birmingham, nearer his relatives. Which
room?’

‘This one,’ we said together.

‘Fine, some paperwork, back to the office,’
and she marched back the way we had come.

We trotted after her in line, like two
little ducklings. As we all marched down the corridor I caught myself hoping
Ted would make it.

We completed the paperwork and that was it,
mum had a new home.

We sat in the car afterwards talking.

‘Not like Charnwood, was it?’ I said.

Heather shook her head. ‘I always thought
these places were pretty much all the same. They’re not, some are really nice,
and some are terrible. I had no idea it was like this.’

‘Neither had I,’ I confessed.

‘She won’t take any nonsense, anyway,’ said
Heather. ‘I bet the staff are kept on their toes.’

‘I bet,’ I agreed.

How wrong we both were.

The following day we spoke to the social
worker and told her we had agreed for mum to be moved there. I still wasn’t
sure about the place but there was nowhere else, and as mum now required
full-time professional nursing care we couldn’t have her back at home.

‘I’ll make all the arrangements,’ said the
social worker, and that was that.

Mum was moved by ambulance from Walsgrave Hospital on the following Wednesday, and Heather and I were going out to see her
on the Sunday. We used the few days in between to gather up some more things to
take with us – toiletries and new nightclothes, mainly. By this point, I was
literally exhausted – after years of looking after my mother, and now this new
stress and upset – and we decided to use those few days to go away. We would
drive to the east coast, and visit Heather’s parents; the break would do us
both the world of good. I took some holiday from work, we carelessly packed a
couple of bags, and drove out of the Midlands the following morning.

Getting away from mum was like a breath of
fresh air. I know that sounds terribly selfish and cold, and for that I
apologise, but sometimes you really need to break the bonds of responsibility,
for your own wellbeing. Once refreshed, you’ll have the strength to carry on
again; if you never get a break, never get a reprieve from the suffering and responsibility
of care, then eventually your own health will begin to suffer, and with it your
ability to help your loved one.

We headed to the coast slowly, taking in the
countryside as we went and planning to stop for lunch on the way. But we caught
ourselves talking about mum all the way through lunch, and for most of the rest
of the journey. Her Alzheimer’s had occupied my thoughts every single day for
the past five years, and Heather’s for the past two. This was our first time
away from it, and it was very difficult to let go, to talk about something
else, to have a life outside the disease. At the beginning of this book, I said
that Alzheimer’s reaches out from the patient and grips whoever comes into
contact with it, and that was certainly true of us.

We arrived in Skegness in the early evening
and made ourselves comfortable at Heather’s parents’ house. We hadn’t seen them
for about six months, so we spent the rest of that evening telling them all
about mum. They were fascinated with the anecdotes, as most people are,
especially the elderly, and we found ourselves at midnight trying to talk about
something else. A local pub shut at 1am, so we went there for the last hour. We
drank in the bar and talked about mum’s new home.

The next day we walked on the beach like a
couple of kids. We found another bar and virtually moved in, drinking and
chatting all day and most of the night; we laughed at mum’s antics when she
lived at home, we laughed about poor Bruno’s shaved bum, and we reminisced
about the nice people we had met at Charnwood House, both patients and staff.
We tried to whistle the whistling woman’s four-note tune, but neither of us
could get it exactly right, and we tried to remember the letters I had written
on mum’s behalf to everyone from the leader of Coventry City Council,
complaining about sharks in the swimming baths, to the manageress of Charnwood
House, complaining about the way they dragged mum’s room-mate out of bed every
morning by her feet. We laughed and talked, and temporarily we laid the burden
down. As the hours wore on, though, we became melancholic with the drink, and
we cursed the fates for allowing such a nice old lady to develop so cruel and
spiteful a condition. We agreed that if either of us were ever to contract the
dreaded ‘A’ ourselves, then the other one would shoot them dead as soon as the
first symptoms appeared. It’s amazing what you’ll agree to after you’ve been
drinking all day long. We stumbled and danced along the beach on the way home,
and it was about three o’clock in the morning when we sneaked in.

The few days we spent with Heather’s parents
at the coast were delightful for us. We drank too much, slept too little and
laughed just the right amount. We put Walsgrave Hospital, Charnwood House and
the new home behind us for a precious few days, and I think we both needed it.

On the Saturday morning we visited the local
market and bought a few nice things for mum; a pink cardigan, and a silver
photograph frame; I was going to put her grandchildren’s pictures in it for
her. We said goodbye to Heather’s folks, and drove back into our reality. As we
drew closer to Nuneaton, our cheerfulness evaporated. The nearer we came back
to home, the more we began to resume our former roles as sober, sensible
carers. Our day in the pub suddenly seemed like a lifetime ago.

We got back at around 5pm. At 7pm the
telephone rang; it was the new home.

‘Mrs Slevin had another stroke an hour ago,
and has been rushed into George Eliot Hospital in Nuneaton. I think you should
go there straight away.’

We hadn’t even unpacked our bags. We walked
straight out of the door again and got back into the car.