The Little Girl in the Radiator: Mum Alzheimer's & Me (26 page)

And I couldn’t help but smile.

Then in my mind’s eye I saw her, the little
girl, standing on the other side of the tiny grave. She was six years old or
so, in a pretty pink dress with a matching bow in her hair, and clasping an
armful of much-loved teddies. She smiled at me, with that innocent and open
confidence only children can have, when their entire lives stretch out before
them like a blank canvas, when all things in life are yet possible and the
savage storms of Life and Time have not yet touched their little empires. When
all is as it seems, and the discoveries of life are the enchantments of a
single, sunny afternoon. There she was, little Rose, bejewelled with the
fantastic, pure magic of childhood, which swirled and flowed around her like a
visible cloud. There she was, unconfused, innocent, and receptive to all the
joys of living; totally unconcerned for the future, and focused entirely on the
present, as all happy children the world over should be. Here before me was
Rose, the little girl who in the fullness of time would grow up to be my
mother. Here was the little girl, shining and new, before old age had robbed
her of her reason, and the vicious sneak thief, Alzheimer’s, had stolen away
her hope, and her future, and had left her alone, crying and frightened in the
darkness.

Then she smiled again, and waved; and she
turned, and was gone.

The Little Girl in the Radiator was free at
last.

So, that’s it: this was my story – or,
more accurately, it was my mother’s story.

The true tale of one, simple Irishwoman’s
battle with a disease which robbed her of everything she had; ultimately, it
even robbed her of her own self. If a loved one dies of cancer, or of any other
wasting disease, the patient remains right up to her final breath who she was;
her habits, her personality, her likes and dislikes all remain unaltered by the
disease which is killing her, because it ravages only her body. With
Alzheimer’s, even the last vestige of who and what she is and was is eroded,
until at the end there is nothing left, inside or outside, of the person we
knew and loved.

At the time of writing, 25 million people in
the world have Alzheimer’s disease, and that figure increases every year. If we
assume for the sake of the argument that, on average, each one of those
patients has a circle of only four other family members who are trying to care
for them, then as you read this there are over 100 million people in the world
directly affected by a disease that no-one seems to be doing very much about.

If you are now, or find yourself in the
future to be, one of that legion of carers, then this is my advice to you.

Remember always, that no matter what mad
thing they may say, or no matter what crazy thing they may do, there is always
a reason behind it. When my mother spoke and interacted with the little girl in
the radiator, she was really only trying to explain to the outside world how
she felt about a disease which she could not understand nor express to the rest
of us. When she went through the recurring drama of constantly locking me out
of the house, she was only reacting in an external way to an inner insecurity,
caused by the confusion and vulnerability she felt in her daily life. When she
told me wild stories of sinking ships and crashing planes, she was only
reciting the dramas she had seen on the television earlier that day; and when
she told me she lived in a house with a green kitchen floor, she was only
describing the house of her childhood, as her mind rewound like a cassette
tape, spooling backwards to her infancy.

So bear with them, and try to understand,
even when your patience is tested to its human limits; try to see the humour in
it, for humour there always is, and if you can laugh, then you can carry on.

Dealing with a loved one who has Alzheimer’s
is rather like trying to peel an onion with your bare hands; each time you tear
away a layer, you find there is yet another one underneath, and the more you
peel the layers away, and the closer you get to the core, the more it makes you
want to cry.

Ironically, you may well find that you have
the more difficult time with your loved one in the early stages of the disease,
rather than later. Shortly after diagnosis, when their mental faculties are
sufficient that they can understand that they have the condition, they know
what that means; they may become very unhappy, tearful and depressed. In the
latter stages, they don’t know they have it; they have lost their short-term
memory to a greater or lesser degree (everyone’s different), and they may well
think there is nothing wrong with them. You will have to cope with both stages.

However, there are now Alzheimer’s societies
everywhere, and no matter where on earth you happen to live, there is a society
somewhere near you. All are readily found on the internet or via your doctor;
do contact them as early as possible, as soon as the disease is diagnosed, and
do not be too proud to accept their help; they can make a huge difference to
your quality of life, and that of your loved one. With 100 million people
spread across the face of this planet affected directly by Alzheimer’s, you
cannot be alone; there is a huge support group of volunteers out there for you.
I did not know any of this when I cared for my mum; the support was not widely
publicised. But if you have read this book, well, it doesn’t have to be the
same for you.

I suppose the best you can do for them is
simply to continue to love them. As their condition slowly worsens over time,
and their memory and focus begins to recede through their life, they will tell
you of incidents which may be unknown to you, and parts of your own family
history which had been unknown to you will slowly become revealed; this can be
fascinating, so do listen. Involve every member of your family in the care of
the patient if you can; it is not your problem alone, so ask for the
responsibility to be shared – you will need a break. Do involve your local
Social Services: it’s one of the things they exist for.

Everyone has their limits, and one day you
will realise, with painful certainty and resignation, that you have reached
yours. The day will surely come when you are no longer able to look after the
patient at home. This could be for a number of reasons. Perhaps your working
patterns change and you will no longer be at home, so they will be left to
their own devices for too long. Perhaps you will need to go away from home for
extended periods, travel with your career, or just for a vacation, and you
cannot realistically take the patient with you. Perhaps you simply feel that
you can no longer cope; there is no shame in admitting this. When this moment
is reached, and it will come, you will have to find a nursing home. Your local
Social Services or the internet should be able to provide you with a list of
suitable places within a reasonable distance. You will want to find homes
within a reasonable radius, so that you can call in regularly. Please be aware
that all these homes are not the same, and choose carefully; visit them all;
take into account such things as their weekly fees, and how much help you can
get towards the costs. Are they comfortable? Do they serve proper meals? What
are the other residents like? Could your family member make friends there? Do
the staff treat the patients as numbers, or people? What are the laundry, and
hairdressing, and medical services like? Is the place generally clean and tidy?
Don’t be afraid to ask the most searching of questions, and make sure you speak
to the manager, in depth, before you commit your loved one to one of these
places.

As Alzheimer’s rolls back the rug of their
memory, and all inside the roll is lost forever, there may come a time when
they forget who you are. My mum thought Heather was my ex-wife, and that I was
her brother – until, at the end, she didn’t know me at all. To be expunged from
your mother’s consciousness can be heart-breaking. It feels as if all that has
gone before between you, all the good times and shared experiences, now counts
for nothing. But that doesn’t really matter. What does is that you still love
them, and they still love you, somewhere deep and forgotten. Remind them, tell
them about the good times you have shared; you can remember for the both of
you.

God bless and good luck,

Martin Slevin.

Rose and Bernard Slevin, mum and dad, RIP.

Picture taken on their 50
^th
wedding anniversary.

The following information refers
specifically to the United Kingdom; however, European and world figures are
very similar percentage wise if extrapolated through any national population.

The number of people with dementia in the U.K. has been estimated by applying percentage figures to the known population in 2005:

England
: 574,717

Northern Ireland
:
15,850

Scotland
: 56,106

Wales
: 36,924

Total number of people with dementia in
the U.K. 683,597

The documented age ranges for dementia
are:

40-64 years: 1 in 1400

65-69 years: 1 in 100

70-79 years: 1 in 25

80-95 years: 1 in 6

95+ years: 1 in 3

It is estimated that by 2021 there will be
940,000 people with dementia in the U.K. This figure is expected to rise to
over 1,700,000 by the year 2051; 1 in 14 people over 65 years of age, and 1 in
6 people over 80 years of age have one form or another of dementia.

Alzheimer’s disease is the most common
form of dementia. The proportions of those with different forms of dementia can
be broken down as follows:

Alzheimer’s disease (AD): 62%

Vascular dementia (VaD): 17%

Mixed dementia (AD & VaD): 10%

Dementia with Lewy bodies: 4%

Fronto-temporal dementia: 2%

Parkinson’s dementia: 2%

Other dementia: 3%

Dementia is fairly rare among people under
65. However, there are 15,000 currently documented cases of young people with
dementia in the U.K. The actual number may be as much as three times this
figure, because the reported numbers of young cases are based on referrals to
Social Services, while many young people with the disease do not seek
professional help in the early stages.

·
        
Two thirds of people with dementia are women.

·
        
The proportion of people with dementia doubles
for every 5-year age group.

·
        
One third of all people over 95 have dementia.

·
        
The financial cost of dementia to the U.K. is £17 billion a year; family carers for people with dementia save the U.K. £6 billion per year.

·
        
Two thirds of people with dementia live in the
community, only one third live in care homes; 64% of people living in care
homes have dementia.

·
        
Only 2% of medical research funding is allocated
to Alzheimer’s; £11 per patient per year is allocated to research funding for
Alzheimer’s, compared to £289 per patient per year for cancer.

·
        
Every 71 seconds someone in the U.K. develops Alzheimer’s.

·
        
There are over 5 million people with dementia in
Europe. And over 5 million people with dementia in the United States. There are at least 24 million people with dementia in the world; by 2025
there will be 34 million people with dementia in the world.

·
        
No-one knows what causes it.

Alzheimer’s Society (United Kingdom, except Scotland)

Devon
House

58 St Katharine’s Way

London

E1W 1LB

Tel: 020 7423 3500

Helpline: 0845 300 0336

Email:
[email protected]

Web:
www.alzheimers.org.uk

Alzheimer Scotland – Action on Dementia

Tel: 0131 243 1453

Helpline: 0808 808 3000

Email:
[email protected]

Web:
www.alzscot.org