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As a lot of you know I am currently a full time carer to my father who has Alzheimers disease and my mother who has almost no short term memory. I took on this role in mid 2002 when we all moved here to Llandudno to live in the same house.
Now this is not a life that I would have chosen for myself. I have only been with Dave, my current and final partner, for about 6 years now and we get married next year. I would like to be able to plan a honeymoon, come to that to plan the wedding as we would really like it, and spend some quality time with Dave on a regular basis.
So I have decided that, since I feel like this I must be the most selfish person ever to walk Gods earth and me a Christian at that! All that mom and dad have done for me over the years I should be repaying that willingly not feeling trapped and resentful (even though I do try not to show it you understand!)
After an assessment with my social worker I was put on the mailing list for the local Carers Support Group who now send me regular newsletters and it was here that I first heard about this book.
The Selfish Pigs Guide to Caring by Hugh Marriott with illustrations by David Lock
I assumed from the title that this book would be written from at least a semi humorous point of view so I decided to treat myself.
It is priced £9.95 and is printed by Polperro Heritage Press. It is a soft backed book and it is about 9 by 6 and about ¾ thick so its not too daunting.
The front of the book has a cartoon illustration of a pig looking seriously fed up with a placard saying WHY ME? on it.
The very first paragraph of the book reads thus:
There are people who cheerfully sacrifice time and freedom to care for another human being. They eagerly embrace the onerous task of caring, and are never known to complain about their lot. These people are saints, and this book is not for them.
It was at this point that I began to think that maybe I wasnt as evil for resenting my loss of freedom as I had always thought.
Further down that first page the paragraph reads thus:
There are others of us who have come reluctantly to caring. We feel bad about our unwillingness, and secretly think of ourselves as selfish pigs. Like pigs in nature, we can be of either sex. Also like real pigs, we are not necessarily, or at least always, disagreeable and unpleasant. But were certainly obstinate. This book is for us
OK so I am definitely not evil then Id better read on!
Incidentally I make no apology for copying those two short paragraphs verbatim as they illustrate perfectly who the book is aimed at.
The book can be read from start to finish as you would a novel or it can be read in random fashion reading the chapters that interest you at any particular time. I started by reading a couple of odd chapters and then went back to the beginning and began reading the whole thing.
Throughout the book there are comical cartoons of the pig featured on the front of the book and there are also real life anecdotes from carers whove been through it all.
Chapter One Warning
This explains that the book is not politically correct, not a medical textbook, not a guide to benefits and grants, will not turn you into an angel of mercy and isnt an how to care manual although it does actually advise on all these things to some extent later in the book.
It explains that the author is an ordinary man with no medical qualifications and that he ahs written the book because his own life was turned upside down when his wife was diagnosed with Huntingtons disease. He then spent the remainder of her life caring for her although he did go through times of great resentment and frustration. He chose to write the book to help others in their time of need so to speak and also to remind us that were human and resentment is normal not evil.
He also explains that, being selfish pigs those for whom we are caring must therefore be out Piglets. Person I Give Endless Love and Therapy to.
Chapter Two Why Care at All?
This deals with reasons to care such as guilt, obligation, expectations of others etc., and this did make me stop and think what Im doing and why and it did help me to get it a bit straighter in my own mind.
Chapter Three What if You Didnt Care?
This takes it a stage further and explores the alternatives to caring. Could the state take over? Could you pay someone to do the caring while you carried on living your life? It further enabled me to see why I was doing this.
Chapter Four Youre On Your Own
This chapter explores the loneliness that can engulf carers who only have their piglets for company. This is especially true is the piglet has some kind of mental condition which makes normal communication difficult. It also touches on those well meaning friends who say things like You ought to get out more and Why dont you get a job to give you something to do thus showing that they really have no idea what youre going through!
Chapter Five Are You The One Who Needs Looking After?
This gives some information on carers rights for example as a carer you have the right to an independent assessment by social services to see if there is any help you can be given for yourself as opposed to just for your piglet. It is in the States best interest to keep carers well and as looked after as possible so that we continue caring. After all a carers hourly rate of pay is just over 26p an hour! I cant see a carer provided by the Government working for that much can you?
Chapter Six Remember youre a Professional
This chapter encourages us as carers so be proud of what we do. Although we dont necessarily have any qualifications to do our job, we do a good job and should be recognised for that fact. So when we asked what we do for a living we should say I am a carer not Oh I dont work or I look after the home. It is a travesty of justice that official forms do not recognise carers. If you need to fill in any form which asks you for your occupation you wont find carer listed and yet theres a heck of a lot of us out there! The best you can find is unemployed, homemaker or other,
Chapter Seven Officialdom and Chaos Theory
This gives some general information about getting help, whats available, how to get it and how hard you have to beg for it. Luckily, here in North Wales, the support is very good and is often proactive.
Chapter Eight Your Body
This chapter goes into the ways in which you must take care of your own body, particularly if you piglet is physically disabled and needs lifting. It gives tips on lifting and keeping fit. I must admit I didnt really read this chapter much as it doesnt really apply to me.
Chapter Nine Sex
Again I skipped this one as it is aimed at carers whose piglet is their partner, not at people like my partner and I who have had to become celibate as it is isnt worth starting something when its possible you will be interrupted by a request for hep from the piglets!
Chapter Ten Your Mind
This one comes back to the guilt feelings as it explores how the carers life may have changed. It reminds us of the fact that we, as carers, must take breaks and not feel bad about it or the result will be a breakdown which will result in the stopping of caring for our piglets.
Chapter Eleven Burnout
This is where youre given some information about how to control the effects of caring on the mind. Were told what the symptoms of burnout are and instructed to be selfish in order to relieve some of the pressure before it gets unbearable and something awful happens.
Chapter Twelve Pushing them down the Stairs
This follows on from chapter 11 and no it isnt a set of instructions! But it does seek to inform us that, if we have harboured thoughts however fleetingly of murdering our piglets, then we are by no means alone! It explains why the pressures build up and how to diffuse them, well at least enough to stop you pushing your piglet down the stairs anyway!
Chapter Thirteen New Money
This deals with the fact that we used to earn old money which means a living wage and for some of us it was a decent wage too. Now we earn £44.35 a week for working 24 hours a day, 7 days a week, no holidays, no sick leave, no benefits and we have to reprogram our minds to deal with that. Obviously there are ways of earning a bit more cash mine happens to be EBay where I sell little novelty clocks. This serves two purposes it gives me a little bit of extra cash although not much and it gives me a chance to react with other people even if it is just over the Internet.
Chapter Fourteen The Hands on the Clock
This chapter focuses on the fact that carers livers inevitably are at least a bit in limbo. We are waiting for the time when we can be free to do the things that we want to do instead of the things that we have to do. It also shows us that our time has now changed and things that used to take ten minutes now sometimes take an hour or more because of the disability of the piglet. We need to adjust our own clock to piglet time, because if we dont the stress will become intolerable.
Chapter Fifteen Give me a Break
This chapter starts with a copy of a silly office sign Tomorrow has been cancelled today will be repeated. In the case of carers that is pretty much true. We dont say Thank God its Friday because the weekends are just the same as the weekdays! It explores the possibility of respite care where the piglet is looked after by the State for a set length of time to give the carer a break. There are also day care centres and befriending schemes, although it does warn the reader that the chances of getting this help may well be remote in some areas. Incidentally we are lucky in that respect dad goes to a day centre on Mondays and has had a couple of visits there for respite care for a few days at a time and it is a big help.
Chapter Sixteen The Independence Catch
This chapter discusses the various ways in which the piglet can remain independent and how this can be prolonged or halted depending on how you the carer deal with certain situations.
Chapter Seventeen Is There Anyone Out There?
This one helps you to see that there are people out there who can help providing you are prepared to let them know you need some help. Dont leave your friends in blissful ignorance about how hard your job is, join carers associations and talk to other carers.
Chapter Eighteen The Messy Stuff
This one is more practical and gives ideas and help for when you get to the stage where your piglet needs help with the toilet, washing and all general hygiene matters.
Chapter Nineteen Getting Information
This chapter gives a list of various organisations and their roles together with various aids and adaptations and their uses.
Chapter Twenty Tips Which the Experts Dont Give You
This chapter sort of sums up a lot of whats already been said and reminds you of the important stuff like getting help, taking a break etc.
Chapter Twenty One Young Carers
As the title suggests this chapter focuses on the specific needs of young carers such as schooling, social life, family, development etc.
Chapter Twenty Two - Afterwards
The final chapter deals with how you may feel when you stop caring (as a job) either because your piglet recovers or they eventually die. It gives advice on how to cope with grief and how to adjust and get on with the rest of your life.
And thats it!!!!
All in all I have found this to be an excellent book, written with just the right balance of good humour and practical help. It is written by someone who has experienced it all so when he says he knows what youre going through you know thats true.
It is also good to feel that you arent alone in your situation and that those feelings you thought were wicked and evil are really only human and most if not all carers have been there, done that and got the tee shirt!
A book every carer should read.