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Summary
In this hard-hitting defence of the informal carer, Rex W Last draws on years of experience looking after his wife, who recently died
after a long stay in a care home with dementia, and many years before that both had been campaigning on the carer’s role in mental health issues.
He confronts the neglect of the "informal" carer, both in the lack of any training or preparation for the caring role, and, more significantly,
in helping them cope with the huge challenges of losing their role when their loved one enters full-time care.
In the absence of official support, he offers a wealth of information, advice and encouragement based on his own personal experiences.
Table of Contents
There is a button next to each chapter number - click it to read a short extract from that chapter.
Chapter One - Stating the problem
Let me transport you back to the year 2008. It’s late afternoon in the local
teaching hospital and the Neurology department waiting area is almost empty.
Like much of the main building’s interior, it’s an uninviting windowless space
with notice boards groaning with health-related posters and advice on support
groups for all manner of unpronounceable ailments. The seating is tired and
uncomfortable-looking. The walls are drably painted the colour of institutional
custard, and in one corner the brown reception desk shutters have long since
clattered down for the night.
The sole person present is a woman hunched in a
chair looking lost and despondent. In the distance, you can hear the buzz of a
vacuum cleaner and voices wishing one another good night. Time passes with aching
slowness. Then a specialist nurse appears, hastens across to the woman, sits down,
places her arm round her shoulder in a gesture of comfort and commiseration and starts
to speak to her in hushed tones.
Chapter Two - A personal tragedy
It started with a twitch. An invisible twitch. For many months, neither of us
thought much about it but it bugged my wife a great deal, and she kept on nagging our
GPs until one fine day one of the doctors in our Health Centre referred her to the
Neurology department in the local University hospital. Maybe, I guess, in the
hope that they could make it — and possibly her, too — go away. However, things
didn’t quite work out like that. Then it was that the twitch became something
far more sinister, and the whole direction of our lives together was irrevocably
altered. A tipping point, if ever there was one.
Chapter Three - The role of the ‘informal carer’
We too can bring a wealth of knowledge to the table, mostly not medical, but
all of it highly relevant to the current condition and future treatment of the patient.
It emphatically is not a case of the medical professionals with their greater knowledge being
in any way superior to Joe Public and his or her loved one.
We are — or should be — approaching
the situation as different kinds of equals interpreting it from radically
distinct perspectives, and it is in my view essential that the mentally ill
patient should be viewed from both directions, as it were, if they are to
derive the greatest benefit from those around them who are handling their case.
Chapter Four - A dementia-friendly home
One of the points which I will keep on holding forth about in caring for someone
with dementia, and one which has a general relevance for a loved one with
a disability or illness of any kind, is that prevention is better than cure...
When the time came for [our fancy new toilet] to be inaugurated, as it were, a small
crowd of admirers from social work and elsewhere solemnly gathered around the
aforesaid pedestal and they hung on to every word from the gentleman salesman
representing the product company. He was all eagerness to demonstrate the device,
for which purpose a transparent plastic cover was provided which fitted under the seat
whilst the extremely vigorous wash cycle was under way.
Unfortunately, in his enthusiasm the salesman had failed to fix the plastic cover correctly...
Chapter Five - When things do go wrong
I realised that I was constantly being informed (a) after the event and
(b) how to go about firefighting the issue concerned rather than offering
me advanced warning of what might happen and being given the appropriate
tools to cope with it. There was never any attempt to prepare me for
issues which were yet to raise their ugly heads.
It may be classic Parkinson’s or dementia to the medically-trained expert,
but it was for me also classic in its attitude to the informal carer who,
poor soul, is not blessed with a medical degree but is simply doing an
impossible job with both hands tied behind their back.
Chapter Six - They think it’s all over
The first emotion to surface in my case was guilt. I had the Power of Attorney,
I made the decision, she ended up in a home — and the immediate aftermath was
pretty fraught, to put it mildly. Fortunately I was not accused by any relatives
of ‘putting her away’ for my own convenience. That, I understand, can happen
quite often, as relatives, particularly sons and daughters, are not notorious
for their rationality in these situations.
You will also find yourself suffering from what is known in the business as
‘anticipatory grief’, which I touched on right at the beginning. In sum, it
means feeling grief for a loss which has not yet been fully completed.
Your loved one has gone, but he or she is not physically dead, to put
it bluntly.
Chapter Seven - Trauma, PTSD and survivor’s guilt
The first and most important point to remember, and one which I make no apology for
stressing once again, is that it is not the severity of the cause of your trauma
which is significant. The key element is the effect which it has on you as a person.
In dealing with this, you should be wary of the blandishments of many who will say:
‘Get over it.’
Self pity is no way to seek to go forward. Let me not mince my words: this is
going to be one hell of a challenge, but if you had the strength of personality
and depth of love to undertake the caring of your loved one in the first place,
surely there lies within you the potential to face up to the supreme demands
of facing the future now and accepting it.
Chapter Eight - Finding a way forward
The focal point in your steps away from despair and directionless wanderings is
that you have to recognise that there is no silver bullet, no Harry Potter magic
wand invoking dog Latin spells to whisk the problems away and send you soaring into
the sunny uplands of a bright new future. Life isn’t like that, and your present
circumstances are a particularly unpleasant example of just how bad things can become.
Grief and anger are near neighbours in the context of caring, and if you can accept
their presence, you are well on the way to controlling them. It is hardly possible
to wipe them out altogether, given the fact that you are in a situation which is
slowly, but inevitably, heading downwards, but it is possible to stay on top of
them. Note a recurrent theme which lurks beneath what I have been maintaining
throughout this book, namely, that society, friends and family tend not to form
the positive circle of support you believe they should provide.
Chapter Nine - Home alone
That pain may well be acute, the sense of abandonment raw, not infrequently
mingled with an intensity of guilt at somehow not having done enough to spare
yourself and your loved one the chasm that has now opened between you, but
please do remember one key factor in all this. Do not be tempted to jump to hasty
conclusions. Do not even consider moving house, for example, unless circumstances
compel it, because of the siren allure of the ‘fresh start’ in a shiny new
sheltered apartment.
I am not trying to medicalise (to use the awful term) yet another aspect of the
carer’s sufferings, I am simply pointing out that the time of transition from
home to care home potentially constitutes yet one more serious challenge to
you in your journey as a carer. Some people may overcome that experience quite
swiftly, with others the sense of distress can endure for a very long time.
Chapter Ten - Answering the question
There are many different very deserving good causes out there all jostling
together and holding out a begging bowl for resources. This is just one
more good cause. Join the queue. The trouble is that if a hundred or more
priorities are all jostling for attention at a time of financial
pressure and the need for a total rebuild of the NHS, the temptation is
to do nothing, because singling one out would be too challenging and too
unfair towards the other urgent issues demanding resources.
The crisis of caring is such an overwhelmingly clear and present danger,
one which dominates all others, that it would be utterly disastrous
to ignore it and fail to take urgent steps to confront the increasing
challenges now and in the future. We will live longer, we will
probably enjoy much healthier lives, we will cost the nation in
pensions and medical bills quite a small fortune, and hardly anyone
is taking the issues seriously.
