journeys heart of the
Jodi Rose
Carers’ stories of Love, Loss and Transformation
journeys heart of the
Carers’ Stories of Love, Loss and Transformation
Jodi RoSe
Published by Arbon Publishing Pty Ltd. 45 Hume Street, Crows Nest NSW 2065, Australia PO Box 623, Crows Nest NSW 1585, Australia Telephone: +61 2 9437 0438 Facsimile: +61 2 9437 0288 Email: admin@arbonpublishing.com or visit www.arbonpublishing.com Managing Director Fritz Gubler Publisher Chryl Perry Project Editor Marie-Louise Taylor Designer Stan Lamond Photographer Leonard Metcalf Proofreader Janet Parker
This publication and arrangement © Arbon Publishing Pty Ltd 2015 Text © Trirose Pty Limited 2015, with the following exceptions: Pages 78–83: text Whitehall JS. The power of 13. Med J Aust 2013; 199 (11): 798–799. © 2013 The Medical Journal of Australia—reproduced with permission. Page 127: quote © Mape Andrews 2014 Pages 142 and 145: prayer © Ainsley Pope 2014 Pages 164–71: text © Barrie Littlefield 2014 The photograph of Murray Rose on page 248 was taken on the morning of 15 July 2011 during an interview conducted by John Clarke; this photograph is © Sporting Nation and is used with their kind permission. All rights reserved. No part of this book may be reproduced in any form or by any means, electronic or mechanical, including photocopying, recording, or any information storage and retrieval systems, without permission in writing from the publisher. Wherever possible, copyright material has been reproduced with the knowledge and consent of the copyright holders concerned; every effort has been made to trace copyright holders, to obtain their permission for the use of copyright material and to ensure that credits accurately comply with the information supplied. National Library of Australia Cataloguing-in-Publication entry Creator: Rose, Jodi, author. Title: Journeys of the heart : carers’ stories of love, loss and transformation / Jodi Rose. ISBN: 9780992351274 (hardback) Subjects: Caregivers’ writings. Caregivers--Attitudes. Care of the sick. Love. Bereavement. Loss (Psychology) Dewey Number: 155.937 This book was printed and bound in China by Toppan Leefung Printing Limited on paper supplied from plantation or sustainably managed forests.
Journeys of the Heart is dedicated to Murray, who taught me so much about loving, living and dying.
Foreword The journey starts with a diagnosis … but ends with life renewed.
I first met Jodi Rose at Parliament House, about a year after Murray’s passing. I work as the Director of St Vincent’s Sacred Heart Health Service, and whilst I never met Murray at his home, I direct a service that ultimately meant I had a small role to play in ensuring that Murray and his family received the care and dignity they so justly deserved. My role ensures that many more people receive the care and dignity they so justly deserve. Jodi and I talked about many things; about Murray and their shared journey. It is important for people to have their questions answered and their feelings acknowledged and confirmed. This helps them to prepare for the next step in their journey. I quickly knew that Jodi was receptive; she is kind, she is a nurturing soul. She had nurtured Murray and her family, and she has nurtured many a budding ballerina. Now she wanted to nurture again; to go on doing what she had always wanted to do, always did. Jodi wanted to make a change to help others, to help them heal. 6
F o r e w o r d
She is an important ambassador for palliative care; she demonstrates that death need not be feared. Jodi understands that palliative care is not always about death, but also about living, living as well as one can. Palliative care is also about walking on a journey with others; and along the way, everyone helps each other in the right way and at the right moment. I believe we die as we have lived. Murray lived a dignified life and passed with much dignity. Jodi wanted to write a book, to tell others that she has herself healed and to help others heal. The true stories in this book show that each journey is unique in its path, its complexity, its love. But each journey ends similarly in the rebuilding of lives. The stories tell us that healing develops new thoughts, new energies, new focus and new journeys for those who have cared for a loved one who is facing death. Journeys of the Heart is a remarkable achievement. It shows us how death will change each and every one of our lives.
From From From From From
Death Death Death Death Death
comes … comes … comes … comes … comes …
Love Understanding Healing Joy Life
Dr Richard Chye, 2014 7
Contents Dedication 5
Foreword Dr Richard Chye 6
Introduction 10
Part I
Part II
Honouring
Acceptance
Blessings
Insight
Jodi Rose 21
Dr John Whitehall 77
18
74
Respect
Rejoice
Connie Foo 33
Rebecca Armstrong 87
Sharing
Belief
Dr Michael Barbato 41
Ali Tylee 95
Gratitude
Devotion
Marcella Zemanek 55
Terry Psarakis 103
Renewal Professor Hans Zoellner 63
Part III
Part IV
Part V
Caring
Healing
Connecting
Courage
Hope
Grace
Lilian Tesoriero 115
Barrie Littlefield 163
Douglas Hawkins 207
112
160
204
Realisation
Friendship
Letting Go
Mape Andrews 127
Colt Sandberg 175
Teresa Johnson 219
Miracles
Sacrifice
Peace
Leonie Pope 137
Eve Aldridge 183
Louise Nicholas 227
Learning
Strength
Support
Lily Myers Kaplan 149
Lois Greene 195
Judy Batchelor 235
" Jodi’s Healing Tips 245
Afterword 249 Resources 250 Acknowledgements 252 About the author and photographer 254
Introduction Each of us has a unique story, and life never turns out the way we expect.
We experience twists and turns, peaks and valleys, precious moments and heartache. And whether we realise it or not, at every moment life gives us opportunities for growth, understanding and love. When transforming and cataclysmic events take place, we may be catapulted out of our regular existence at lightning speed. However, after enough time spent living in shock, slowly the truth of what matters most starts to emerge. The light can begin to shine through. My husband Murray passed away on 15 April 2012. Though I had previously lost many friends as well as my parents to various illnesses, this was to be my biggest and greatest test. It gave me inner strength to support him through the final stretch. This meant everything to me. After his passing, I realised that I had the opportunity to open my heart in a new way. Part of me understood that when I opened my heart I would need to carefully turn it inside out, and then refold it anew. 10
Introduction
Before Murray’s diagnosis he completed his memoir, Life is Worth Swimming, and according to his wishes, it was compiled and published after his passing. As publicity built, the tempo of events increased and I was interviewed many times by the press. Naturally, I was asked numerous questions about Murray and his life. But people were also concerned about my own state of wellbeing, and this led me to think about what it had been like for me to care for and lose Murray. One overriding question surfaced months after my loss: What might have helped me back then? What clear and concise guidebooks about loss, love and support are out there? Since I began writing, documenting my thoughts has been more cathartic than I imagined, and doing so has given me another purpose. Being a storyteller has helped me to heal, and Journeys of the Heart is the end of the road on which I have been travelling. More specifically, it is a collection of individuals’ experiences around death and transformation, gathered together by me. Even with such challenging subject matter, I hope that your spirit is lifted by the resilience of the people whose stories are contained in this work. The concept slowly grew as I began asking carers if they would be comfortable telling me their stories. For some it was ‘too close to home’ to open up and talk about themselves or their families in such a public way. Many agreed to participate, while a handful chose not to. They came through many channels—friends of friends, family connections, Murray’s mates, my ballet students both past and present and people who are or were involved in the medical profession. I felt that it was very important to represent a wide range of carers in order to communicate the many different scenarios that are possible in end-of-life transitions. I was fortunate to be 11
JourneysoftheHeart
able to include not only the stories that involved a loved one who had a terminal illness, but also the experiences of those carers who dealt with genetic issues, transplant needs and dementia. The first step in documenting the carers’ stories was interviewing them. Initially, I conducted interviews in my home, where for a few hours or so the carer discussed the steps they had taken from the beginning of their loved one’s illness to the final stages and beyond. While you may have the capacity to empathise and imagine what it might be like to care for a loved one, until you have been through this experience, it is difficult to fully comprehend. There is a special bond between carers, and the people I interviewed probably felt freer speaking with me in the knowledge that I was like them. I think this helped greatly. I asked each person twenty questions, which fell under the headings of Diagnosis, Decisions, Support, Self-care and Gifts. My inquiry covered: the thoughts and feelings of carers upon learning of a loved one’s diagnosis; types of support they wished they’d had but didn’t; the ways in which they did or did not practise self-care during and after their loved one’s transition; and any particular thoughts that may have helped them pass through their experiences and cope with the aftermath. As more interviewees surfaced, both from across the country and overseas, it was sometimes not possible to conduct face-to-face interviews in Sydney. By phone, I reached carers in other parts of Australia, as well as in New Zealand, the United States and Ireland. Once I assembled their story, a rough draft of the interview went back to the carer, which they could either accept or amend. I edited as little as possible in order to stay true to the carer’s voice. Everyone had input. Most were content with the outcome, 12
Introduction
a handful carefully edited out more personal information that they did not wish to include, and some dropped out after feeling uncomfortable about seeing their story in print. Two people simply answered a questionnaire and two others contributed their personal copyrighted versions. Journeys of the Heart could have been a much longer book, as there was no scarcity of interviewees. Though I spoke with many people during my journey writing this book, I still wish I could have spoken with more, and maybe in the future there will be other ways for me to honour more carers’ stories. Each carer was at a different stage in their personal process of grief; some had lost their loved one only a few months earlier, while others were recalling an experience that had happened ten years ago or more. From my interviews I came to understand that everyone truly grieves in their own way. Some people navigate through their pain and find a new way to embrace life in a relatively short period of time. Others struggle for a lot longer trying to deal with their loss. No matter the road we are on, I believe that we have so much to share and learn from each other. I hope this book brings you value and support, wherever you find yourself in your personal process. I am deeply grateful for the openness and honesty of everyone I interviewed. If you are travelling the way of a carer for a loved one, their stories may help you to feel less alone. The subject of faith comes up in a variety of ways within these carers’ stories. While some carers held strong to their faith, others began to question what they once believed, either during or after their loved one’s end-of-life journey. In some cases, people discovered beliefs they didn’t know they had. My desire in Journeys of the Heart was to remain neutral on such matters, as I aimed simply to give an unbiased account of the carers’ 13
JourneysoftheHeart
experiences. People can often gain great comfort from their beliefs, and it was extremely important for me that everyone could feel free to express themselves fully without editing their truth. I have presented each person’s voice with acceptance, honour and respect. How do we come to terms with dreadful, painful and paralysing experiences? There is no perfect formula. We each meet what we are faced with in our own way. The devastating fact is that our loved one’s journey will crescendo into a final passage called death. None of us wants to believe in an ending and we cannot truly fathom this outcome, no matter how strong our faith might be. Whether or not we hold spiritual beliefs, there is a certain point when we realise we need to surrender to something. A universal message of love can be found throughout all of the carers’ stories. The mask of the personality falls away when confronted at the end of life. To me, the act of caring means feeling the other person’s presence in my heart and striving to put my own ego aside in order to listen to something deeper. Overwhelming and painful experiences can numb yet also expand reality for both the carer and their loved one. We are never really prepared for these trials. Vulnerability, confusion, helplessness and a combination of many other emotions are natural, but the flip side is that great reservoirs of strength can emerge. In certain cases, loved ones can say and do things that are hurtful, confusing or bewildering. The loved one we care for may actually speak or react from the ‘voice’ of their disease when pain takes over. This can be very difficult on many levels, but I think it is helpful for carers to try and listen to what is being said behind the pain. Of course, the responsibility of being a carer can bring up feelings of fear, anger and confusion, and it is not always easy to be sensitive to 14
Introduction
things that arise. There is no right or wrong, and all we can do is to try our best to handle the situation as challenges appear one by one, moment by moment. I believe it is useful to try to be gentle on ourselves as we sail through uncharted territory. In the stories that follow, carers speak of how they coped with day-to-day living, from receiving the diagnosis to the practicalities of ongoing medical issues and the specific ways they tried to meet their loved one’s needs. A loved one may not have only physical pain, but also emotional or spiritual pain, and it can be the same for a carer. Some people may find it difficult to open up to a family member; however, they may benefit from talking to a more neutral presence, such as a friend, nurse, therapist or spiritual advisor. I found that while working on these carers’ stories, I learnt many lessons and gained broader insight into the individual journeys that carers must navigate. One powerful point of understanding came from the idea that a carer needs to drastically re-create themselves and their psyche after their loss. Of course, I had been going through this myself, but I did not fully realise that this was my process until I spoke with others during the writing of this book. After the initial shock subsides, questions begin to form. How will I go on? Who am I now without my loved one? How do I rebuild? And how do I honour my departed one’s memory? Journeys of the Heart has helped me more than I could ever have imagined, and my wish is that it will serve as a support for you, too. In the silent world of a carer, we often feel very isolated and alone. If you are a carer at home, assisting a carer or even visiting a hospice, I hope that this book provides strength and support. I believe that there are gems of information in this book that will give you an idea of what you might wish 15
J o u r n e y s of t h e H e a r t
to do or say as a carer, and I believe that having insights into other people’s journeys may be of assistance if you are faced with a similar situation. You never forget the loss of a dear life gone. Often we wish that their path had been easier for them, for us. But love never dies, and as we reopen in the wake of deep shock, we may find something sacred—their presence in our life after their death. It may help us to acknowledge our own gratitude for this presence. Even following devastating events, appreciation for the beauty of what is around us every day can still return. It may take a long time, but it is possible.
"
16
I n t r o du c t i o n
17
When we take on the role of carer, our whole world is dramatically
altered. We begin an arduous and sometimes long journey through a foreign landscape, often blindly feeling our way in the face of an
onslaught of emotions. However, we may find ourselves learning to see in a new way ‌ we may ask ourselves how best to go forward and honour our loved one.
I begin this collection of stories with my own personal experience. Though in uncharted territory, I must face life as my husband would have wished; and in doing so, I honour his memory. Despite the heartbreaking reality that he had very limited time, I am grateful to have had the opportunity to care for him. As the following pages show, everyone has a different story.
$ We explore the relationship between a father and daughter, and
we see how her faith gives her strength as she experiences a love that had previously seemed hidden.
$ A palliative care doctor acts as an advocate for his brother. Here, he
honours his sibling by telling his story, not only through the eyes of a carer but as someone who has had a long history in palliative care.
$ After losing her husband, a loving wife focuses on moving forward one step at a time, honouring his memory in many ways with strength and courage.
$ Expressing his love for his wife, a professor reinvents himself and in that way honours what they shared.
Part I
Honouring ‘They can be like the sun, words. They can do for the heart what light can for a field.’ St John of the CroSS
Gratitude Marcella Zemanek’s story
‘Saying goodbye was heartbreaking.’
55
Honouring
H
ow do you say goodbye to someone you have spent the last thirty years with, the person who has constantly filled your life with love, laughter and adventures? This was the dilemma I faced when my beloved husband, Stan Zemanek, was diagnosed with a grade IV tumour—a glioblastoma. Even though he was determined to beat this diagnosis, I knew in the back of my mind that it would take a miracle for him to survive. Stan and I met at work. He conned me into typing his editorials, letting me think he was far too busy to do this himself. The reality was that he couldn’t type but didn’t want to admit it. We became great friends and started dating. Stan didn’t believe in marriage, he maintained it was only a bit of paper. However, three years down the track he proposed, and it was the happiest day of my life. That’s when the adventure really began. A year after we were married we packed up and went to live in the United States. There we experienced some amazing times, such as Australia winning the America’s Cup, the 1984 Olympic Games in Los Angeles and the opening of Olivia NewtonJohn’s Koala Blue franchise. We also met some fantastic and interesting people along the way. Our lives changed forever, however, when we returned to Australia. Stan began his very exciting career as a broadcaster and TV host, and it was at that moment that I realised my life would never be the same. It was, in fact, like riding the Big Dipper at Luna Park. The more successful he became on air, the more recognised he became publicly. I found this a little confronting at first, especially when we were in New York at Times Square, miles away from Australia, and a couple of Aussies greeted us with 56
Gratitude
smiling faces telling him how much they enjoyed what he did. Stan always took this in his stride and was always willing to say g’day and have a chat to those people who took the time to acknowledge him. We all became part of his listening audience. When our daughter was married, one of his lovely listeners made a blue garter and padded coathangers for the wedding dress. When our first grandchild was born, Stan was beside himself with excitement in announcing that we were grandparents. Our grandson, Hamish, became his best mate. Stan couldn’t get enough of him and loved the time spent with him; in fact, when Hamish was old enough, he would visit Stan in the studio and talk to the listeners. Everyone knew him. After Stan was diagnosed, Hamish hardly left his side; it was as if he knew something was not quite right. Initially, Stan’s only symptom was double vision, and he thought he may need a new prescription for his glasses. If only that had been the case, I wouldn’t be telling this story and my life would be normal—well as normal as life could be living with my effervescent, crazy, funny husband. Stan was given six weeks to live. He decided that this wouldn’t be the case and he would keep going as long as he could. After being operated on by the wonderful Dr Charlie Teo, six weeks of daily radiation and a constant diet of steroids, chemotherapy and a trial drug, my partner in crime finally succumbed to this dreadful disease. If there was anything good to come out of this, it was that Stan was able to die quietly at home, in his own bed, in my arms. It was the greatest honour I have ever experienced, as I was there when he finally let out his last breath. Stan didn’t give up without a fight, he fought with every fibre of his being. However, we as a family decided that we had to give him permission 57
Honouring
to go, that we were going to be alright, that we would miss him like crazy but his job was done. This was the hardest decision I had ever made. I wasn’t ready to say goodbye—how would I live without him? This man who had brought so much joy and fun into my life was reduced to being administered morphine on a daily basis and had lost the ability to speak as well as his peripheral vision. This crazy man who made people sit up and think, who was outspoken on many issues but who also had this innate sense of compassion and kindness, was slipping away from me and there was nothing I could do to save him.
Saying goodbye was heartbreaking. However, I realise that some people never have thirty minutes of happiness, let alone over thirty years of it. His last coherent words to me were, ‘Have a good time’. I wanted to scream, ‘How can I have a good time without you!?’ But now, nearly seven years later, I realise that he wanted me to keep living, to honour him, to be part of our grandchildren’s lives, to help raise awareness for brain cancer and to reach a place where I am not curled up in a ball of sadness. Naturally, this took time, and while I don’t believe time heals all hearts, I have come to the realisation that it is possible to move on, even if it is one tiny step at a time. I’ve learnt that it is okay for me to laugh out loud and have fun, because that is exactly what Stan would have wanted. I will always love him 58
Gratitude
and I will keep him in my heart forever, that’s a given, but it should not stop me from enjoying whatever life I have left. One of the greatest gifts that both Stan and I could have received, apart from our already perfect family, was the birth of our second grandchild, Chloe, a beautiful little baby girl. She was born exactly four months to the day before Stan left us. He was able to welcome her into the world and hold her, and I love the fact that seven years later she believes that she can dial 1800 HEAVEN and talk to him. Saying goodbye was heartbreaking. However, I realise that some people never have thirty minutes of happiness, let alone over thirty years of it. I have also realised that it is important to speak about him, to celebrate milestones as if he were still here. To this day, I wear rose quartz close to my heart, and I always remember that I was loved and cherished and made to feel special by someone who was pretty amazing.
"
59
Honouring
Marcella is devoted to her daughter, son-in-law and two cherished grandchildren. She is supported and loved by a wonderful circle of friends and is passionate about her role as Ambassador and Director of Cure Brain Cancer Foundation.
" Thoughts for healing and transformation $
It was the greatest honour for me to be there as my beloved Stan finally let out his last breath.
$
Now, nearly seven years later, I realise that Stan wanted me to keep living, to honour him, to be part of my grandchildren’s lives, to help raise awareness for brain cancer and to reach a place where I am not curled up in a ball of sadness.
$
I have come to the realisation that it is possible to move on, even if it is one tiny step at a time.
$
I’ve learnt that it is okay for me to laugh out loud and have fun, because that is exactly what Stan would have wanted.
$
I have also realised that it is important to speak about him, to celebrate milestones as if he were still here.
60
Gratitude
61
Renewal Professor Hans Zoellner’s story
‘Not to worry.’
63
Honouring
O
ne day my wife Helen experienced severe chest pain at work and went to see a doctor. The doctor found no signs of cardiac disease. Over the following weeks, Helen experienced discomfort and reflux. Despite treatment for these symptoms, she lost a lot of weight and kept getting worse. We went to a local radiologist who did a CAT scan and gave us the film with instructions to visit our GP the next day for the report. Of course, I couldn’t help myself and looked at the images. Helen sat next to me on the sofa while I looked at the scans. I could see her liver was grossly enlarged from massive metastases and that the gastric symptoms would have been due to the stomach being squeezed shut. This was a textbook presentation of ‘cannonball metastases’, so named because the cancerous cells look like cannonballs in radiographs. Of course, I couldn’t tell Helen what I thought. It really wasn’t my place, and besides, I was hopeful I was wrong and bottled that one up. I had to deliver one of my regular lectures at the University of Sydney first thing the next morning, which seemed a damn nuisance, and then we saw the doctor. She gave us the bad news that Helen had cancer. It was an unusual presentation in that although the colonoscopy confirmed the suspicion that Helen had colon cancer, there was no ulceration or obstruction; instead, the primary cancer remained confined to a small polyp. There was no hope for a cure. However, she was given palliative chemotherapy, which she tolerated well, and her tumour mass reduced, taking the pressure off her stomach and giving her comfort. That gave us a lot more time than we had expected, with almost a full year between diagnosis and her death, and that was wonderful. During our life together, I had worked endless hours. Our daughter Sophie was born very soon after 64
Renewal
we were married, and a little while later, during my research training, our son Mark came along. At that time, just to feed the family I was doing emergency dentistry, and when I wasn’t doing that I was in the lab. But things didn’t change much later on. Long hours just became a necessary part of my academic career. The truth is, I was not home as much as I should have been or wanted to be. However, during Helen’s last year I was there pretty much all the time. The university, much to their credit and the credit of our dean, allowed me as much time with Helen as I needed. I went to classes and scooted back home as quickly as possible, working mostly from my computer and over the phone. Helen confided to my mother, ‘I have all his attention—I have all of him now!’ That made her quite cheerful. The important gift she gave me was her love and her life. We had thirty years together full of acceptance and affection. We did, of course, have our rough spots and sometimes grated against each other, but in the end the rough patches wore smooth and we were happy together. I really was privileged and very fortunate. I feel that by sharing our lives we became more complete, and that we grew further together than we would have alone. To me, Helen became more perfect with time—more generous, more loving, more open-minded and more accepting of life’s many difficulties. Nothing makes us more vulnerable than love, but love also gives the greatest strength. Life is pretty damn empty without it, and it is a powerful human need. It sounds ridiculous, but the last year Helen and I had together was simply marvellous and really beautiful. We had a lifetime of memories, some of which are captured in home videos and photographs that continue to give me pleasure. One photo that stands out for me was 65
Honouring
taken two months before Helen died. We were lunching at our favourite cafe and the image really captures what she was like, with that especially beautiful smile and mischievous grin. So many people were very caring and did what they could, dropping by with food or phoning to see if they could visit. Before she was ill, we had planned our joint fiftieth birthday party and had already mailed invitations to ‘Our 100th’. People said, ‘Oh, you aren’t going ahead with the party, are you?’ But we felt our circumstances gave us more and not less reason to come together, and it turned out to be a fantastic night. We hired out a pub, and family and friends from all over the country came. Helen was feeling well, and the celebration of our life together was made with lots of laughs, plenty of food and drink and some wickedly funny speeches. It was our biggest, best and most joyous party. There was nothing Helen enjoyed more than a good chat, and that’s because what Helen liked above all was people. They endlessly fascinated her. Helen was forever recounting stories of people she knew. Often her stories would make you laugh, sometimes they would break your heart. Helen’s stories always reflected a sincere fellow feeling of the human experience. She saw herself in others and others in herself. People were supportive, but I don’t think we really accessed that much support. We became selfish with our time, and what we really most wanted was to be left alone to spend whatever time we had together. I don’t think it was so much a matter of denial; rather, it seemed best to deal with things by carrying on as normally as possible. Apart from that, I also found managing the mechanics of it all personally helpful. Helen was constantly taking medications and I felt relief in keeping careful track of them, along with 66
Renewal
their side effects, taking her to chemotherapy, meeting the palliative team or oncologist. It gave me something positive to do. That was my role, and I think Helen had a sense of just coming along for the ride. I even learnt how to cook. In the past I had been slack with housekeeping because I was busying myself with more important things—like lying on the couch. But in the end, I took great pleasure in those responsibilities, especially cooking, as a way to show Helen love and affection. I so enjoyed planning meals that might tempt her palate. However, ironing was the exception, and although she had over many years complained about my cotton shirts, she seemed to take comfort from the normalcy of pressing the laundry while I worked on the computer. We simply joined the gentle rhythms of daily life. There was a sense of ‘It is awful isn’t it, but what are we going to eat for lunch? What movie are we going to see? What’s on the tellie? Should we read something to each other? What are we going to do? Oh, sit on the deck—oh, that will be fun.’ We occupied ourselves with having a pleasant time together. I know it sounds like it should have been the most traumatic time, but it was lovely and wonderful. It’s just sad it had to end the way it did. Several weeks before Helen passed away, we came to talking about messages. There had been something about the Voyager spacecraft on television; it was carrying a message about humanity out into space, and we got to talking about what message we would want to send, particularly if we were limited to a single word. All sorts of words came up. One word Helen was keen on, for example, was ‘Integrity’, but in the end we felt that the one word we would find the most beautiful to fire out into time was ‘Love’. Helen squeezed her eyes shut and said, ‘That’s lovely.’ 67
‘Jodi … has invited others to join her in sharing their stories of love and grief, resulting in a book that we believe will be invaluable to those who find themselves in the role of carer.’ Dianne McKissock OAM and Mal McKissock OAM, Co-Clinical Directors of The Bereavement C.A.R.E. Centre and The National Centre for Childhood Grief, Sydney
‘No physician has the skill to match the impact of words coming from one who has walked or is walking the same path; the wise counsellor helps to make these contacts, either personally or via the provision of written material. i believe that Journeys of the Heart has the potential to make a substantial contribution in this context.’ Professor Graeme Stewart AM, Director, Clinical Immunology, Westmead Hospital, and Director, Institute for Immunology & Allergy Research, Westmead Millennium Institute, Sydney
‘These are stories of courage, compassion, honesty and practical wisdom that would enrich anyone working in palliative care. A timely book.’ Rani Wood, Hospital Chaplain, Perth
‘These stories acknowledge the practical challenges, heartache and new experiences faced when caring for a loved one and then trying to “live again” afterwards. They provide hope and inspire strength. i will be recommending this book to my patients.’ Dr Giselle Kidson-Gerber, Consultant Haematologist, SEALS, Prince of Wales Hospital, Sydney
‘Journeys of the Heart is a rich testament to the profound experiences that shape us when we embrace caring for those we love best at the time when they need us most.’
Priscilla Maxwell, Community Relations, Karuna Hospice Service, Brisbane