Surviving Family Care Giving

Co-ordinating effective care through collaborative communication

Gráinne Smith

• Publisher: Routledge
• Year: 2014
• ISBN:
  9781317611448
• Edition: 1
• Topic: Psychology
• Subtopic: Mental Health in Psychology
• Index: Psychology

Surviving Family Care Giving: Co-ordinating effective care through collaborative communication is a practical book for family and other home carers in a variety of situations. Gráinne Smith shows how to provide the most effective coordinated care possible through constructive communication and collaborative care, to support individuals who have long term physical and mental health problems, including conditions from Alzheimers to alchoholism, autism to anorexia, schizophrenia to multiple sclerosis.

Written from personal experience as a family carer, Gráinne Smith includes interviews with other carers and service users; and draws on years of working with children and their families in tough times. Chapters such as Challenging Behaviour, Confidentiality, and Motivation illustrate some of the many problems facing carers who support vulnerable individuals. Problems include isolation, feelings of helplessness and uncertainty about what best to do, what to try to avoid and the lack of much needed relevant information and resources to support care-giving.

Surviving Family Care Giving vividly illustrates the daily difficulties experienced by care givers who offer long term care and support – and shows how to work through them. It provides suggestions on ways to build both constructive collaborative care and good family teamwork through effective communication, and how to ensure continuing care and support for the person at the centre of all the efforts. This book will be essential reading for family and other carers, including professionals trying to create ongoing continuity of care for their patients outside of treatment and education centres.

1
Beginnings and aims

In Always on call, always concerned, The Princess Royal Trust for Carers states:

On average, 12% of the population provide unpaid care for a friend or family member; this increases to 18% for those aged 55–64, 16% for those aged 65–74, and 13% in those aged over 75.¹

Just looking at those statistics, it’s quite stunning to think how many people that could represent in every street, every village, town, city … coping quietly, many without any outside support, information or resources. Stunning to wonder how many of our own neighbours could be ‘carers’ without our knowing.

In 1996 when my daughter Jay, 23, finally told me she had been diagnosed with ‘anorexia nervosa, binge purge type’, I had heard these words – but I had no idea what they meant, had never even heard the term ‘carer’. So, feeling sick with worry, I made an appointment with our GP. I asked what I should be doing, or avoid doing, to help and support my daughter, who at the time looked like a walking skeleton – and the answer was ‘You know as much as we do.’This was not said unsympathetically; rather it was a statement of fact – in the 1990s, because most doctors at that time still believed in treating an adult as a single unit in isolation, very little if any information was offered to home carers who shared the lives of adult patients. Despite the very obvious change in her personality at home, whatever her emotional and mental health at the time, whatever her level of reasoning, Jay was legally an adult – and therefore ‘in charge of her own life’.

Years on, I know that some of the incidents I observed over those awful years could have been indications of heart problems – for instance, when Jay obviously had great difficulty climbing upstairs, and the several occasions when she fell downstairs – and I now know that low mineral levels due to eating problems can cause serious problems, e.g. lack of potassium can lead to heart failure. It is frightening to realise that former interpretations of ‘confidentiality’, which restricted communication to talking exclusively to the patient, in combination with my complete lack of knowledge of mental health problems or when to call for medical assistance, could have led to very serious consequences for my daughter.

We were extremely lucky. Once Jay reached her individual Major Turning Point and acknowledged her eating problems after five years, she then turned her considerable willpower and determination to fighting the illness rather than fighting those around her.

Yet mostly home carers simply cope, often over many years, often without mentioning their own particular difficulties. In some instances I’d known relatives, friends and colleagues for many years, but it was only when Jay became very obviously ill that they mentioned they’d also had experience of home caring for and supporting someone through very tough times – including three members of my large now-scattered-all-over-the-world family, who told me of experience with an eating disorder. This echoes stories from helplines, when I’ve talked to several people who were not only currently trying to support someone with an eating disorder, but who told me ‘I’ve been through it before with my sister, or cousin, or neighbour … and I still don’t know what to do to help’.

Having failed to find that elusive practical book, I eventually chose some of my journal entries, searched for information far and wide, quoted many stories from other home carers I’d met or talked to by phone – and put together the book I’d been looking for, ‘Anorexia and Bulimia in the Family’.²

Thankfully despite my ignorance, and having to try to work out every day what might – just might – be helpful through those very tough times, Jay has survived. Over the years I have met several other parents whose children sadly did not survive, often due at least in part to a lack of co-ordinated care, with home carers lacking relevant information crucial to their at-home efforts.

‘You know as much as we do…’

Learning from other carers

Over those years I gradually realised through talking to people from all sorts of connections that, although home carers were in a very wide range of situations and supporting people with a range of conditions or illnesses, there were common echoes which kept recurring – feelings of isolation, helplessness, despair at the lack of information and support, exhaustion from the relentless daily effort needed to continue.

Having recognised these themes in common despite the differences, I decided to write this book to try to offer support for the many home carers far and near, using my own experiences as a home carer and as a teacher, who has worked with so many families during tough times (as well as the good ones), and also as a member of the OU Development Group whose work feeds into the Social Work Honours degree. I will also quote from the experiences of carers I’ve talked to informally – in my own life and at work, at meetings, on helplines, at conferences – as well as providing quotes from interesting and relevant books and other sources I’ve found, sometimes in unexpected places.

This book is not an instruction book. Given the enormous range of conditions and illnesses, situations and circumstances in which carers find themselves, I reckon it would be impossible to write such a book. Rather than being about any particular condition or illness, this book is about building effective communication and how families and other home teams can offer important support through collaboration and co-ordinated efforts – which is important whatever the illness, condition or situation of the people involved.

What are the main aims of this book?

Having learned so much in my own home care-giving journey, I aim to share ideas and practical suggestions to support other home carers in their search for what they need in their own individual situations – which will probably be different from mine.

I also hope that professionals working in hospitals and health clinics, schools and treatment centres will read this book and think more about the lives of their own patients, clients and pupils outside their place of work.

Reading (and writing) this book

Given so many different health conditions, with so many individual variations involved even in the same diagnosis, different home situations, different family and individual approaches depending on so many factors, including ethnic, culture and religious backgrounds, as well as the influence of individual genetic inheritance – personal make-up and background, strengths and weaknesses, past experience and current situation – is this a simple ‘one size fits all’ book? No.

Words and interpretations

Many words which I’ve known for years, believing I understood their definitions, have caused me to pause. For instance, what is a ‘family’? Apart from a group of beings such as cats or dogs, is it a social group consisting of parents and their offspring? Perhaps a group of persons related by blood? Or a group descended from a common ancestor? What of an ‘extended family’? All the persons living in one household, perhaps related or unrelated, or some related and others unrelated, e.g. in cases of second or subsequent marriages where one or both partners already has children?

And what about ‘communal living’? Students, or a group of friends or acquaintances, may also share a household perhaps simply for economic reasons – are they a ‘family’? Can an unrelated group provide supportive home care?

Think of your own family, and the home situations of others. What would your definition be?

And in different places, different words may be used for those who provide support without professional services, whether they are a relative, a partner, a good friend, a volunteer – a carer, a home carer, a care giver, an informal carer, an employed carer…

Whether or not relationships are informal or through bloodlines, whether they are ancestral, informal or legally-binding, home situations are made up of individuals who happen to share accommodation and possibly certain bonds linked by current and / or past shared experiences, perhaps through marriage or blood relationships. Therefore I prefer to use ‘home carer’ to describe the committed individuals who support and care for another person in a home situation.

Challenging behaviour may be triggered in vulnerable people through frustration – perhaps through physical difficulties and loss of independence and activities, perhaps personal restrictions in understanding, or changes in personal interpretation and understanding situations. Perhaps they may have a lack of understanding of accepted social interactions, as is the case for those on the autistic spectrum, or a complete loss of understanding of time, memories of personal history and background, as in Alzheimer’s. Serious problems can be caused by addictive/compulsive conditions such as alcoholism; symptoms, e.g. paranoia, can involve suspicion of other people and their motives and/or actions, intense denial and ‘challenging behaviour’ – all of which can add greatly to those tough times. Individual reactions and behaviour can be the problem, presenting a ‘challenge’ to other people … although, as always, different people may have different feelings and reactions in any situation which they find ‘challenging’.

What is your definition of ‘challenging behaviour’? Is there a common definition which covers all possibilities? (See Chapter 4, Challenging Behaviour.)

Practical ideas and suggestions

This book offers ideas and suggestions for family and other home carers to discuss, and from there to develop their own team approach in their own situation – an approach which may be reviewed and adapted if and when necessary, whatever the home arrangements and bonds.

Chapters

Ordering the chapters was difficult. Which should come first, Information and Resources, or Communication? Confidentiality or Motivation? Or Carer Survival in tough times, to ensure that the best possible care continues? Where does teamwork fit into home life – and how? What of ‘leadership’? Can everyone in a family or other home group offer the same level of support?

All these issues link and knit together in so many different individual family and home situations. There may be no easy answers, with different possible solutions in any situation – which of course may change with the circumstances and people involved, not to mention with possible changes or progress in the individual’s health condition.

Different ways of reading this book

Straight through beginning to end, or dip in and out, or a mix of both? The choice is yours.

A personal learning curve…

While I would never wish to repeat those years of struggle when my daughter seemed to be changed out of all recognition, I recognise how much I’ve learned from the experiences of others caring at home. I also learned from professionals – medical, health and social work care workers – who have recognised that many informal carers can be a very valuable resource in supporting their pa...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• List of illustrations
• Foreword
• 1 Beginnings and aims
• 2 Home carers – themes in common
• 3 Collaborative care
• 4 Challenging behaviour
• 5 Family teamwork – how?
• 6 Communication – constructive or not?
• 7 Confidentiality – and professional/family communication
• 8 Motivating towards positive change – how?
• 9 Information and resources
• 10 Carer survival
• Useful contacts and websites
• Index