Being a Cancer Patient’s Carer: A Guide PDF
Preview Being a Cancer Patient’s Carer: A Guide
Being a Cancer Patient's Carer A guide Wesley C Finegan MB BCh BAG MRCGP MICGP D Pall Med Boca Raton London New York CRC Press is an imprint of the Taylor & Francis Group, an informa business CRC Press Taylor & Francis Group 6000 Broken Sound Parkway NW, Suite 300 Boca Raton, FL 33487-2742 © 2005 Wesly C. Finegan CRC Press is an imprint of Taylor & Francis Group, an Informa business No claim to original U.S. Government works This book contains information obtained from authentic and highly regarded sources. Reasonable efforts have been made to publish reliable data and information, but the author and publisher cannot assume responsibility for the validity of all materials or the consequences of their use. The authors and publishers have attempted to trace the copyright holders of all material repro- duced in this publication and apologize to copyright holders if permission to publish in this form has not been obtained. If any copyright material has not been acknowledged please write and let us know so we may rectify in any future reprint. Except as permitted under U.S. Copyright Law, no part of this book may be reprinted, reproduced, transmitted, or utilized in any form by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying, microfilming, and recording, or in any information storage or retrieval system, without written permission from the publishers. For permission to photocopy or use material electronically from this work, please access www.copyright.com (http://www.copy- right.com/) or contact the Copyright Clearance Center, Inc. (CCC), 222 Rosewood Drive, Danvers, MA 01923, 978-750-8400. CCC is a not-for-profit organization that provides licenses and registration for a variety of users. For organizations that have been granted a photocopy license by the CCC, a separate system of payment has been arranged. Product or corporate names may be trademarks or registered trademarks, and are used only for identifica- tion and explanation without intent to infringe. Contents About the author v Acknowledgements vi Introduction vii How do you use this book? viii Dedication x Section 1: Preparing to be a Carer 1 1 On becoming a carer 3 2 BEFRIENDing the patient 7 3 Taking time for yourself 11 4 Thinking about your own health 14 5 Taking responsibility for the patient's personal affairs 21 6 Financial issues associated with being a carer 23 Section 2: Plain Speaking: Communication 27 7 The patient has been given bad news 29 8 You know the patient has cancer before they do 33 9 The staff don't seem to have time to speak to me 36 10 There is not enough privacy for discussions with the staff 39 11 Avoiding collusion with the patient 41 Section 3: Practical Problems 47 12 The patient has a very poor appetite 49 13 The patient is breathless 54 14 The patient is having chemotherapy 57 15 The patient is requesting complementary therapy 60 16 The patient is confused 62 17 The patient is constipated 65 18 The patient is depressed 69 19 The patient has diarrhoea 73 20 The patient is not drinking enough 75 21 The patient needs equipment to assist with day-to-day care 77 22 The patient has a fistula 82 23 The patient needs to get out and about more 86 24 The patient is jaundiced 88 25 The patient has lymphoedema 90 26 The patient's mouth is dry 94 27 The patient's mouth is sore 98 28 The patient seems to be in pain 102 29 The patient needs practical care 105 30 The patient is having radiotherapy 111 iv Contents 31 The patient is feeling sick 113 32 The patient's skin is at risk 117 33 The patient has difficulty swallowing 120 34 The patient is weak 123 Section 4: Psychological, Social and Spiritual Issues 127 35 The patient's cancer was in remission but has recurred 129 36 The patient's treatment does not appear to be working 131 37 Taking the patient home from hospital 134 38 The patient wishes to discuss spiritual matters 138 39 The patient is dying 157 40 Euthanasia, advance directives and related topics 160 41 A further examination of the body has been ordered 165 42 Coping with bereavement 167 Section 5: Appendices 171 Appendix 1: Glossary of medical words 173 Appendix 2: Patient's pain record 176 Appendix 3: Medication chart 177 Appendix 4: Useful organisations 178 Appendix 5: Who's who? 182 Index 185 About the author I was aged three when I first announced that I wanted to be a doctor. In 1978 I achieved that aim when I qualified from The Queen's University of Belfast. After a further four years of training, I entered general practice in east Sussex. In 1976 I met Alice and we were married in 1979. We have two children, Chris and Sharon. While working in general practice, I developed an increasing interest in caring for patients with cancer and this led to me being appointed as a consultant in palliative medicine in central Scotland in 1991. In 1994 I became a cancer patient myself and had to retire from my hospice post on the grounds of ill health. I was very fortunate to be offered a post with the University of Dundee where I continue to offer some input into their courses on cancer and palliative care. Last year I had another recurrence of my cancer. A month after completing treatment, Alice also developed cancer. As her carer, I have not needed to use many of the skills I learned at medical school but I did realise how useful it was to have my specialist knowledge and know what to ask and whom. Caring for each other has taught us a lot and we have thought about many things that we never had to consider before. Hopefully, by sharing some of the things Alice and I have learned while caring for each other, we can make your role as carer a little easier. Wesley C Finegan November 2004 Acknowledgements I would like to thank my wife Alice, who taught me so much about being a carer both when she was caring for me and latterly when I became her carer. I acknowledge, with gratitude, the help and advice offered by Patricia Manson BDS in her comments on the chapters on coping with a dry mouth and coping with a sore mouth. I also wish to thank all the people who taught me so much about caring - especially my patients and their families. Finally I thank the staff at Radcliffe Publishing, who have advised me and helped me throughout the producing of this book. Introduction It is estimated that one in eight people are carers, but not all of these people are caring for cancer patients. Because the relationship between carer and patient is so varied, including family, professional carers, friends and lay carers, the term 'the patient' has been chosen as the most universally applicable wording to cover the various relationships between the carer and the person being cared for. This book is primarily written for the non-professional carer and is intended to offer practical advice and ideas. Many of the topics are also covered from a slightly different perspective in the companion volume Trust Me, I'm a fJe£teF Cancer Patient (Radcliffe Medical Press, 2004. ISBN 1 85775 877 3). This is unavoidable since both books need to be free-standing and not dependent on each other. How do you use this book? I have been a cancer patient for ten years and more recently I have cared for my wife Alice, who also has cancer. I have been increasingly aware of the need for patients, doctors, nurses and other carers to work together to achieve realistic and achievable goals. That's why I wrote this book. As a child, I once saw a bicycle with two riders. I asked my mother about it and she explained that it was a 'tandem'. She explained how one person steered but both shared the work of pedalling. I have used the same idea in this book and in the companion volume Trust Me, I'm a ~ Cancer Patient. I'll try and steer you through the maze of dedsions and practical problems you and the patient will face, always with the concept of working 'in tandem' with the doctors and nurses who are looking after the patient. How can you all work 'in tandem'? The word 'tandem' is used in the chapters to break the problem into six sections to make it easier for you to find the information you need. The TANDEM acronym breaks each of the chapters into the following sections. ~ The doctor says Here I will give you some relevant information to help you understand more about the problem being discussed. We then use the word TANDEM to examine the various issues from different aspects. TThink You are fadng new situations regularly as a carer. Hopefully I can help you think through the issues you might have to face. A Ask There is so much to learn. Where does one start? What do you need to know and who can tell you the answers? I'll try and help you with some of the questions I have asked. tl5 NNote Making a note of a relevant detail now might save you a lot of difficulty remembering those elusive facts in a few weeks' time! ~ DDo Here I will offer you some practical ideas that have been tried and tested by my patients and some that worked for Alice and me. How do you use this book? ix EExplore ~ Sometimes we want to know more or find out about something we would like to know about. I'll try and guide you to the best sources of information. W M More Information If there is something that has not been said already and it's relevant, you'll find it here. Throughout the text I assume that you have no specialist training as this is often the case where family members and others take responsibility for daily care. For this reason, you will be advised to seek advice from a professional carer but I do recognise that some readers will have the necessary skills and knowledge to make their own decisions. To appeal to as wide a readership as possible, I refer to 'the patient' because you might not necessarily be a family member, although this will often be the case. Where the word 'relative' is used, this can mean a spouse, partner or any family member.
The list of books you might like
