The Little Girl in the Radiator: Mum Alzheimer's & Me (15 page)

‘Oh, yes!’ cried mum. ‘We used to get them
great big gobstoppers, and those sticky toffees… We used to look forward to it
all morning.’

‘Then we’d go home and we’d all have to mop
that bloody horrible green lino floor in the kitchen,’ laughed Ellen.

‘But Richard didn’t have to do it because he
was a boy!’

They both chuckled at the injustice of that.

I hadn’t really been listening to the
conversation, but something in my mind clicked and I knew that what had just
been said was important.

‘The house had a green kitchen floor?’ I
asked.

‘It was a great big kitchen, Martin,’
explained Aunty Ellen, ‘where we all lived when we were small. It had a green
lino floor. You weren’t posh if you didn’t have lino in the kitchen in them
days!’

The two women laughed.

‘It was horrible really,’ she said. ‘No-one
would want it now. You peeled it off a roll and just stuck it down, and all us
girls had to mop the bloody thing every Sunday, or we didn’t get the sweets.’

Mum and her sister were chortling at the
memories which were carrying them both back over 60 years.

The house with the green kitchen floor!

I had assumed that mum was in some sort of
fantasy-land, the details of which she just made up as she went along since the
onset of her Alzheimer’s, but she was only living inside her own memories…
Memories probably long forgotten when she had been well. The phenomena of
rolling back the rug, as the first consultant had called it all those years
ago, had triggered images and thoughts long buried and brought them to the
surface to be replayed again in full colour.

My aunt stayed just for the weekend, and
flew home on the Sunday evening.

When we came to say goodbye to her at the
departure gate, she turned to me; there were tears in her eyes.

‘I’m so glad I came this time,’ she sniffed.
‘I don’t think I’ll see her again somehow, and if I did, she wouldn’t know me.’

Mum, unconcerned, waved and simply said,
‘I’ll see you, Ellen,’ as though they’d be meeting up again very soon.

Ellen gave me a hug. ‘Look after Heather,’
she said. ‘She’s a lovely person.’

Then mum’s last surviving sister, her
closest pal from the years they had spent as little girls in the house with the
green kitchen floor, turned and, with a last wave, left her life forever.

PAINFUL AND DIFFICULT decisions tend not
to go away just because we find excuses to avoid making them. You can put the
event off many times, but one day you have to face it.

Our visit to that first nursing home had
started the ball rolling, so to speak, but we were a good deal shocked by the
place and we had put off the day when mum would have to move in there. We were
supposed to have contacted the social worker after our visit to let her know if
we wanted the spare bed, but we had failed to do so, and we assumed that now,
several weeks later, there would be no spaces available. Mum was getting more
and more forgetful at home, and simply couldn’t be trusted to be by herself
safely any more.

Heather worked as well, so it was just mum
and Bruno in the little bungalow for most of the day. Locking her in there was
both inhumane and dangerous.

We were reminded of the nursing home when
the telephone rang one Friday evening. It was the social worker.

‘I was just calling to see if you had made
any arrangements regarding mum yet?’ she asked cheerily; she made it sound as
though it was
her
mum we were discussing.

‘No, not yet.’

‘Only, the reason I wanted to speak to you
is because another vacancy has arisen there...’

Her words trailed away. I wondered who had
died to make that space available.

‘Okay, I’ll speak to my partner and get back
to you.’

‘If you would, please… These beds are very
scarce these days, you know.’

She rang off.

That night I spoke to Heather when mum had
gone to bed.

Heather shrugged her shoulders. ‘I was
shocked by how bad some of those old people were. By bad I mean, how far gone…’

‘I know what you mean,’ I said.

‘I felt so sorry for Fred,’ she said.

‘I liked Alice, myself,’ I replied, and we
both laughed.

‘Your mum wouldn’t like Alice,’ observed
Heather. ‘I’ve never heard your mum swear.’

I thought about it. ‘Neither have I,’ I
said.

‘I wonder if all care homes are the same?’
asked Heather.

‘I don’t know,’ I replied. ‘Maybe we should
wait and speak to the social worker again? Maybe there are some other places we
could go and look at.’

Heather was nodding enthusiastically. ‘I’ll
speak to her again tomorrow.’

* * * * *

Throughout the whole of the next day, my
mind kept returning to the visit of a few weeks before. I kept thinking about
Alice – presumably someone’s mother, and granny – plonked in a chair, alone in
a room, with the telly tuned into some sports programme and the sound turned
down.

Then there was old, threadbare Fred
wandering aimlessly along corridors seeking out a dead friend: just one more
forgotten old man, looking for someone to play dominoes with – not much to ask,
really – while the staff turned him around and sent him on his way, instead of
finding him someone else.

Then there was Sally, managing the place
with a sterile, detached, disinterested, business-like attitude – as a farmer
might manage a herd of cattle.

And then there was the place itself: the
steep and, I thought, dangerous stairs, the clinical, surgical green walls, the
photographs pinned to those walls – but for whose benefit? So the residents
might recognise themselves and know which room was theirs? Or for the staff, so
they might know who slept where? Or so that the occasional visitor might be
able to locate their relative? I wondered.

During our brief visit, I remembered being
struck by the fact that Heather and I were the only non-residents and non-staff
members in the whole place. Where were all the other visitors? It was a Sunday,
after all. When I became more used to the way these places work and are run, I
knew that such establishments receive few regular visitors. The old –
especially the old and demented – are quickly abandoned by their relatives.
Once grandma’s mind has become impaired to the extent that she exhibits extreme
or very unusual behaviour, she is shut away to the regimented mercies of Sally
and her colleagues.
Breakfast is at eight, lunch at 12, and dinner at five.
Bed by 10.

If an old person breaks a hip in a fall and
goes into a regular hospital, on average they will receive three family visits
per day. If the same old person is admitted to a care home, they will not
receive three family visits per month.

I have never quite come to terms with these
facts, but I think that, when the mind has gone, so to speak, there is a
tendency to believe that the character of the patient, the inner nature and the
personality, has gone, too. This is simply not true, and more efforts should be
made to educate the public about dementia in general, and Alzheimer’s in particular.
The percentage of our population who have dementia in one form or another is
terrifying, and yet little is said about it. No politician ever raises it as an
issue, and no campaigns are fought on its behalf. Dementia in our society is a
secret, social pandemic, which blossoms behind closed doors through ignorance
and neglect, and it’s about time someone stood up and said so.

* * * * *

 ‘How did you get on with the social
worker?’

It was the following evening, and I started
to quiz Heather before I had even taken off my coat.

‘There are no vacancies anywhere else at the
moment,’ she said. ‘There is only the spare room we saw on that Sunday –
apparently it’s vacant again. She says if we really don’t like it we can either
keep mum at home or she could go into a hospital until a care home has a
vacancy somewhere else. She said the place we saw isn’t the worst one around.
We need to give her an answer before next weekend.’

‘Not the worst one around?’

‘That’s what she said.’

We began a heartfelt discussion which went
on until the early hours of the next morning, as we swayed back and forth
between putting mum into a hospital or the home we had visited and hated.
Eventually, we agreed that we didn’t want her to go into a hospital when she
wasn’t really sick – not physically, anyway.

‘Maybe we could put her into the home for
the time being,’ I suggested, at last. ‘Then if somewhere nicer comes up, later
on, we could perhaps move her.’

Heather nodded, and we called it a night.

Thus are such momentous decisions made.

Heather called the social worker back later
that day. It was suggested that we would take mum down to the home the
following weekend. Once that was agreed there seemed to be no way back. It was
almost as if I had agreed to commit a crime and now I couldn’t back out of it,
no matter what my conscience might be telling me.

The rest of that week was among the
strangest of my life – not because anything bizarre or incredible happened, it
didn’t, but because I knew that at the weekend I was going to trick my mother
into going into what was by any other name a mental institution, from where she
would probably never emerge alive. That might sound melodramatic, but a care
home for the dementia patient is the 21st century equivalent of the old Bedlam.
The patients are treated with much more respect and dignity nowadays, true, and
their rooms are cleaner, and they are fed properly; but madhouses they
effectively are, no matter what we call them.

For mum’s part, she continued to cuddle
Bruno, talk to the little girl in the radiator, and listen to the Irish band
with just as much devoted rapture as before.

* * * * *

I suppose it was my conscience bothering
me, but I tried to make her final week at home as pleasant as I could. We sat
in the front room every night and chatted away about everything and nothing.

She told me about her childhood in Dublin, about growing up in the house with Peggy, Ellen, Marie and Richard, her sisters and
brother. She spoke about them as though they were all still alive, though Marie
and Peggy had both been dead over five years. She spoke about the courtship
she’d had with my father, and how happy they had been. Again, though, she spoke
about him as though she had seen him only yesterday; and as she chatted, I
thought about her rug being rolled further and further back. By now, I
imagined, there was more carpet inside the roll than on the floor.

I think it was on the Wednesday that the
conversation turned to the people she saw in the house.

‘How is the little girl in the radiator
getting on these days?’ I asked.

‘All right, I suppose,’ came the distant
reply. Whenever mum spoke of the little girl in the radiator, her voice became
sadder and softer, and she drifted away slightly, as though she were trying to
remember something that had become vague and distant.

‘Is she still trapped in there?’ I asked,
gently.

Mum nodded slowly. ‘She will always be
trapped in there,’ she said.

‘Why is that, mum?’ I asked. The strange and
probably unique illusion that a child was trapped inside our domestic heating
system had begun to fascinate me. I wasn’t trying to become an amateur
psychiatrist; I was just trying to get to the bottom of this one delusion, as
it seemed the most peculiar, and persistent, of all.

‘She has no way out,’ replied mum, simply.

‘Is she happy in there, mum?’ I asked.

Mum lifted her face and looked at me. I saw
a sadness in her eyes that I had not seen for a long time.

‘How could she be?’ she answered. ‘How
could
she be?’

I didn’t want to let this drop, and pressed
on. ‘How did she get trapped in there in the first place?’ I whispered.

Mum shook her head. ‘She doesn’t know how it
all happened,’ she replied. ‘One day she was happy at school, and then suddenly
she was caught in there.’ Mum nodded towards the radiator. Then she slowly ran her
fingers along the rippled face of the heater. ‘Ever since then, she’s been
trapped, and she can’t get out.’

‘What’s it like in there?’ I asked. By this
time I was as engrossed in the story as mum herself.

‘It’s very dark,’ said mum, softly. ‘It’s
very dark, and she gets very frightened, poor little thing. And she’s very
lonely.’

‘She still tells you things?’

‘She speaks to me all the time,’ said mum.

‘What does she tell you?’

It sounds strange now, looking back, but mum
and I had rarely communicated together at such a deep and personal level
before, even though the subject of our discussion was a fantasy.

‘She tells me secrets about Peggy, and the
others,’ she said, in a confessional tone. ‘She tells me all sorts of things.
Secret things.’

‘What sort of secret things?’ I whispered.

Mum shook her head.

‘Can’t you tell me?’ I asked.

Mum shook her head again. My mother had
always been good at keeping confidences. I remember when I was small her
telling me once that a secret was a sacred thing, that it was like a precious
gift that someone had asked you to keep safe for them, and that if a friend
gave you such a gift it was because they trusted you. If you gave their
precious gift away to someone else, if you betrayed that trust and told their
secret, it was like stealing from them. I never forgot that, and became very
discreet myself. Mum was keeping the secrets of the little girl in the radiator
now. Alzheimer’s doesn’t change our personal values, they are too deep-seated
for that; it only alters our perceptions, and messes with our memories. Who we
are, at a fundamental level, remains unaltered.

‘Okay, I understand,’ I said.

Mum smiled.

‘Does she ever tell you nice things?’ I
asked, trying to lighten the mood a little.

‘Sometimes,’ nodded mum, ‘Not often, though.’

‘What nice things does she tell you?’ I
asked.

‘She tells me how good to me you are,’
replied mum, matter-of-factly.

The words felt like a slap in the face. I
must have blushed, something I haven’t done in years, because I felt my face
become hot. I couldn’t stop thinking about the coming weekend.

‘She tells me how kind you are to me,’ said
mum, smiling innocently.

‘That’s nice,’ was all I could think of
saying.

Heather and I decided to take mum out one
evening for a nice meal before she went into the home at the weekend. We chose
a restaurant we both knew which served great food, and I called them up and
booked a table for three. I was a little wary about this trip out, as taking
mum anywhere always involved a certain amount of risk, but I figured that,
between us, Heather and I could deal with pretty much anything that might
happen.

Heather selected one of mum’s best dresses,
one that was still intact, and helped with her makeup and brushed her hair; the
finished result brought a lump to my throat. I hadn’t seen her look so nice
since dad had died. Alzheimer’s patients tend to withdraw from the external
world, so that things which once mattered ‘out there’, like personal
appearance, suddenly no longer have meaning. Mum had let herself go since being
diagnosed, and to see her all dressed up like this was really quite special for
me.