a journey livedPalliative Care Australia

a collection ofpersonal storiesfrom carers

Contributors: Private submissions have beensupplied voluntarily.

Images: Sourced from individual privatecontributors

Design: Design Edge

ISBN: 0-9752295-1-6

Published: Palliative Care AustraliaJanuary 2005.

© Palliative Care Australia

This work is copyright. Apart from any useas permitted under the Copyright Act 1968,no part of this work may be reproducedwithout prior written permission fromPalliative Care Australia. Requests andenquiries concerning reproduction rightsshould be directed to: Rachel Dryburgh,National Awareness and Events Manager

Palliative Care AustraliaPh: 02 6232 4433 Fax: 02 6232 4434 Email: rachel@pallcare.org.au

Any enquiries or comments in relation to thispublication should be directed to:

Rachel Dryburgh National Awareness and Events Manager Palliative Care Australia

Ph: 02 6232 4433 Fax: 02 6232 4434 Email: rachel@pallcare.org.au

Palliative Care Australia gratefully acknowledgesthe financial assistance of the AustralianGovernment Department of Health & Ageing.However, the views expressed are those of theauthors and not necessarily the Department ofHealth & Ageing or Palliative Care Australia.

The dandelion symbol is the national symbol for Palliative Care. The dandelion is a gentle part of naturesymbolising a wishing wand when lightly blown upon. The wind picks up the seeds and carries them tonew destinations to create new life where they land

Contents2 Foreword

3 What is Palliative care?

4 Jacky’s story Written by her husband Alan Dillon

7 Jack’s story As told by his wife Barbara Sawyer

10 Roy’s story As told by his wife Elinor Winter

14 Brian’s story As written by his wife Janine Sayers

20 Alex’s story As written by his mother Jayne Turner

23 Judy’s story Being a palliative care volunteer

25 Jessica’s story As written by her mother Michelle Sutherland

29 Greg’s story As told by his wife Gai Gibson

a journey liveda collection ofpersonal storiesfrom carers

In my role as President of Palliative Care AustraliaI have met many wonderful people who havedone a magnificent job in caring for terminally illfamily or friends. All too often the contribution ofthis group goes unnoticed. This publication is away of honouring those people and payingtribute to the wonderful work they have done.

Each year thousands of Australians provide highquality care to people dying from a terminalillness. However, we know many are unaware ofthe fantastic support services available to themduring this very difficult time. We hope thispublication will highlight those services andencourage Australian’s to consider such care asan opportunity to be valued.

To those who have contributed to thispublication, who have opened their hearts andfor some, old wounds, I thank you. For many ofyou this is a way of remembering the person whohas died. But this publication also honours youand your family, and the significant contributionyou made to their end of life.

This publication also contains a story from Judy,a palliative care volunteer. Each week Judy andhundreds of volunteers all around Australia helpcare for people dying in their communities. Theysupport not only the person at end of life buttheir family and friends. Without thesevolunteers, palliative care in Australia would bevery different.

Finally, it would not have been possible toproduce this publication without the support ofthe Australian Government Department ofHealth & Ageing. Palliative Care Australia is verygrateful for their ongoing commitment toimproving awareness and understanding ofpalliative care within the Australian community.

I hope you enjoy a journey lived.

Professor David CurrowPresidentPalliative Care Australia

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Foreword

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Carers resources If you are a carer, you’renot on your own, there are a lot of resourcesavailable to help carers. Commonwealth CarerResource Centres in each state and territory canrefer you to services and give you practicalinformation to help you, all for free.Contact Commonwealth Carer Resource Centreon 1800 242 636 (free call except from mobiles)or visit the website www.carersaustralia.com.au

Need financial advice? Centrelink has aFinancial Information Service that can advise onwills, enduring power of attorney, funeral plansand bonds and how to administer a deceasedestate. Contact Centrelink on 132 300.

Financial help Centrelink has paymentsavailable to assist when caring for someonewho is terminally ill including Carer Payment,Carer Allowance and a bereavement payment.To find out more contact Centrelink on 132 717.

Palliative care is about caring for people with aterminal illness as well as their families andfriends. Palliative care is care which ‘palliates’, orrelieves pain and other symptoms. It is givenwhen treatment to cure an illness won’t workany longer. It aims to ease the pain, distress andmany other physical, emotional and spiritualproblems that are present with a terminal illness.

Using various techniques and knowledge, a teamof many health care disciplines including doctors,nurses, allied health workers, chaplains andvolunteers, provides coordinated physical,psychological, emotional and spiritual support.

Palliative care aims to make the person feel incontrol of their treatment and their quality of life.It involves family and friends, recognising thatthey, too, need to be prepared for the death ofsomeone they love, as well as being there to offerhelp and support during the grieving process.

Palliative care adds to the range of medicaltreatments and services already being providedand works together with the specialists, generalpractitioners and nursing staff already involved.Sometimes palliative care helps in the decisionmaking about when to stop some treatments.

Palliative care services provide a range of servicesto patients and their families. These may benursing, medical care including consultancy tothe person’s GP, day care, counselling, diet advice,loan of equipment, physiotherapy, occupationaltherapy, social workers, bereavement support,pastoral care and a wide range of support fromtrained workers.

What is palliative care?

When you are 19 years old, gazing into the eyes ofthe love of your life, and saying “Til death do uspart”, it is natural for us to believe that this deathwill only occur when life has been fully lived,when all dreams have been fully met, when allchildren and grandchildren have been huggedtightly… at least once. What you don’t expect isthat after years of working together towards agoal, of filling a family with love and a housewith life that your beloved is taken before her50th birthday, and only a few months before herfirst grandchild is born.

When my beautiful wife Jacky and I were told shehad cancer we could not believe it – Jacky hadalways been fit and healthy, had regular checkups, and was only 48 years old. The news thatJacky had only six months (at the most) to livewas shattering. I could only think of our 32 yearsof marriage together; 32 years now down to sixmonths… in the blink of an eye.

It is human nature to get frustrated by thosethings that we cannot possibly make sense ofnor control… and this frustration and anger setin. Why Jacky? Why her life? Why our life? Jackyhad done everything right. A truly selfless person,she had always put her family and friends beforeherself – our two sons, Jason and Craig, wereborn before Jacky was 21. She never lamented lossof time or a limited youth, moreover only saw therichness that our sons brought to our life. Herfamily was everything – we were planning forearly retirement, and extending our home andrenovating in preparation for Jacky to look afterour future grandchildren.

After the news, we decided to take a positiveattitude and fight the cancer, one day at a time. Idecided not to go back to work, so we couldspend as much time together as possible. Iwondered then just what would happen if Isimply couldn’t afford to take such an extended

period of time off work, and felt sympathy forthose families who couldn’t spend this lastprecious time with their loved ones.

One of the hardest moments for us was tellingour sons, Jason and Craig. Jason was to marryMichelle in four days and as we never keptanything from them, we decided to tell thembefore the wedding. Of course they weredevastated for their mother, but they wanted toremind us of the celebration of love that wasmarriage, and all that we had taught them. Sowe celebrated. It was a great wedding and tookour minds off things for this short, joyous time.Everybody was asking Craig when he was finallygoing to marry his long-term partner Debbie andwe had some great laughs. Two weeks later Jackycelebrated her 49th birthday. It was definitely abusy month, a happy month, but under tonedwith worry about what was to come.

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Jacky’s story Written by her husband Alan Dillon

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She had a way of touching the hearts of everybody whocame into cont

act

with herThe doctors said chemotherapy would buy Jacky

some time, and as we had now realised just howprecious every day was, Jacky started hertreatment a week later. She had no trouble withthe emotional elements of startingchemotherapy, such was her strength, evenpicking up the scissors and cutting her beautifullong hair. This was, I believe, her way ofmaintaining some sort of control, by telling theworld “I know my hair is going to fall out, but Iwill decide when, and how this will happen.”

The chemotherapy brought us into our firstcontact with Clare Holland House, which is set onthe shores of Lake Burley Griffin in Canberra. Wemet the palliative care team there, who wouldaccompany Jacky on her weekly visits to see thedoctor for check ups and to monitor hermedication. If Jacky was unwell and not up tovisiting the doctor, they would come and visit usin our home. It was to become a lasting

friendship. We gained strength from theirunderstanding and inspiration from theirkindness. When faced with death, you can also befaced with the greatest of humanity.

Over the following weeks things were as good ascould be expected. We were now getting dailyvisits from the palliative care team, thechemotherapy was doing its job, our hopes were

high and there were always family and friendsdropping in to make sure we were ok. I had evenlearnt to cook! My friend Sid was a builder, andhe was finishing the final touches on the house,so Jacky could see her dream home completed.We were surviving, but I soon realised thatwithout all this help and support we would neverhave coped – I wondered how people couldpossibly cope without this support structure.

A visit to the specialist for Jacky’s three monthlycheck up shattered our world again. The cancerhad grown and the chemotherapy wasn’t havingan effect anymore. We were told they would stopthe treatment. Jacky wanted to keep going buther body was getting weaker and they advisedthat she would not cope – it would simplymake her too sick – but we were determinedto fight on.

Life goes on in the midst of sadness – Jason andMichelle informed us that we were going to begrandparents for the first time. This news liftedJacky’s spirits and she was so excited, especiallywhen we were invited to join them for their firstultrasound. It was a treasured moment. Theyshared with us the joy of knowing they werehaving a daughter and I also think they wanted‘their little girl’ to know her Nan did get tosee her.

Over the coming weeks Jacky’s conditiondeteriorated. She was a fighter and nevercomplained, and the nurses continuallycommented that this was one very special personthey were treating. Jacky went to stay at ClareHolland House for a couple of days at a time forthe next few weeks so they could monitor hermedication. She felt secure there as she used toget frightened about being alone, especially atnight. They understood this and had been

through it many times, thus providing anempathy that gave all of us strength andcomfort. The prospect of death and dying wasseen as a natural part of life at Clare HollandHouse, and they ensured that this final chapterwas well spent, even realising the importance ofice-cream and jelly at 3am!

Jacky had decided she would like to spend herlast days at Clare Holland House. Linda, apalliative care nurse, assisted with this difficultdecision. Jacky moved into Clare Holland Housebut passed away three days later, surrounded byour family. I felt a deep sadness, not only for Jacky,our family and friends, but also for the palliativecare nurses and doctors who had cared for Jackyin more ways than one. She had a way oftouching the hearts of everybody who came intocontact with her, but we all knew she was nowfree of pain and finally at peace.

Our family erected a playground at Clare HollandHouse in memory of Jacky, as she loved childrenand we wanted her spirit to sit quietly amidstthe sounds of children playing. It was also ourway of saying thank you to the whole palliativecare team. My union, the CFMEU (ConstructionForestry Mining and Energy Union), inpartnership with Foxtel, organised to provideFoxtel TV to all rooms at Clare Holland House,including the staff rooms, which was anothersmall token of our appreciation for the workClare Holland House are doing.

I still drop into Clare Holland House regularly tosay good day, and they take the time to makesure I’m doing okay. They have been a very specialpart of our family over the last six months, andwill continue to be throughout our life. We willbe forever grateful for the help and strength theygave Jacky, myself and our family, and the dignityand understanding they offered her as she closedher final chapter.

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How do you cope when somebody tells you thelove of your life, the man who has been by yourside for almost 50 years has an untreatablecancer, and only has a matter of “days, weeks, orif you’re lucky, months” to live? Lucky? I couldn’tbelieve what the specialist was saying was true –how could it be? Jack had always been a strong,healthy man – wasn’t there something theycould do?

On our arrival home Jack, in a voice betrayinglittle fear about what lay ahead, said to me,“sit down and I’ll tell you what my wishes are,and we’ll get on with it.” His wishes were simpleenough – to visit his family in Victoria, his friendsin Toowoomba, and to stay at home for theduration of his illness.

The first two posed no problems but once theywere completed my dilemma began. Would I beable to cope with Jack’s illness at home, havinghad no nursing experience apart from sick

Jack’s storyAs told by his wife Barbara Sawyer

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It was almost as though he knew everything was now in place and he could

quietlyslip

away

One of the nurses called regularly to make surewe were okay, and to talk over Jack’s conditionwith me – nothing was too much trouble forthem, and they gave me advice at any hour ofthe day or night.

As Jack’s illness progressed I had to phone at 2amone night when Jack became very agitated. Acalm voice at the other end of the line told me toincrease the medication and she would be roundin the morning. Unbeknownst to us all at thetime, that was to be Jack’s last day. The nursearrived (in the circumstances that unfolded, itwas unfortunate my daughter had briefly gonehome to her house) and told me things werehappening much faster than we’d thought; Jackwas slipping away. As we sat on each side of thebed holding my dear husband’s hands, nurseJenny quietly said to him, “let go, Jack, let go” –he did. He quietly and peacefully left us.

children? It seemed such a huge undertaking, butone I had to tackle for Jack’s sake. A doctor friendthen told me about a local palliative care unit,Cittamani Hospice Service at Palmwoods; a placeI didn’t even know existed. I contacted the serviceand a friendly voice told me someone would bedown to have a chat with me shortly. Thatafternoon this calm, smiling person arrived andthe case was assessed.

I soon realised I would come to rely on Jack’samazing courage and selflessness to sustain methrough the journey that was only justbeginning. The service organised a specialmattress, aids for showering and toileting andinformation on medication. Working in tandemwith our doctor, they gave me the confidence tosee things through to their inevitable conclusion.

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However, things didn’t end with Jack’s passing.The counsellor from Cittamani maintainedregular contact for the next 12 months to makesure I was coping with my grief. How’s thatfor caring?

Many people in similar situations have contactedme since, wanting to know about my experience.

One of the strangest coincidences was thetiming of Jack’s death. He left us at exactly thesame time as our son’s plane landed inMelbourne from the USA. It was almost asthough he knew everything was now in placeand he could quietly slip away.

I tell you these very personal details becausemy own experiences have taught me it ispossible to cope with a terminal illness with theassistance of palliative care. When I was able tocollect my thoughts later on, I had thistremendous feeling of satisfaction that I hadbeen able to do this for the man I loved – duein large part to the confidence palliative caregave me. My association with them was onlyover a couple of weeks, but these were the mosttraumatic of my life.

Each time I have assured them they can copewith terminal illness with the help of thepalliative care service, and they will also feelthe same satisfaction in fulfilling what mostterminally ill patients want, and that is to stayat home with familiar things around them andthe love and support of family and friends.

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Roy and I had married late in life – we had threechildren, two girls and a boy – two of whom werestill at school at the time of Roy’s diagnosis. Roywas retired from his shift-working job as a processworker, and was enjoying having the freedom todo the things he loved most, like spending timewith his children, gardening – mostly vegetables,walking the dog, reading and soaking up the sun.

However in 1992 Roy’s health took a turn for theworse when he developed severe pains in hisback. This time we were not so lucky. A bone-scanconfirmed secondary growths in his spine andother parts of his body.

We had been planning an overseas trip for earlythe following year, which neither of us wantedto cancel, so after consultation with his specialistRoy underwent an orchidectomy. Roy recoveredwell and soon went into remission. At the endof March 1993 we left for England, the countryof his birth.

Looking back, I instinctively knew from theexpression on the doctor’s face the news he wasabout to give us wasn’t good. When he asked usto take a seat I prepared myself for the worst –little did I know how much our lives were aboutto change, or how important palliative carewould be in helping me get through what layahead. So great was the impact of palliative careon me, I am now a volunteer carer myself.

Roy’s first trip to the hospital was for prostratesurgery in 1989. The procedure went well butwe were given a scare after the surgery whena routine pathology report revealed moderatelydifferentiated adenocarcinoma of the prostrate.Fortunately our fears were allayed when asubsequent bone-scan showed no advancementof the cancer, allowing our lives to returnto normal.

in the village where he was born, he spent much

Roy’s storyAs told by his wife Elinor Winter

Having not been ‘home’ for over 30 years, thiswas to be Roy’s ‘holiday of a lifetime’. One of themain reasons for the trip was to visit relatives,some of whom Roy hadn’t seen since WWII, anda whole new generation of nieces and nephews.Based in Somerset, at the home of Roy’s sisterand her husband in the village where he wasborn, he spent much of the time roaming thehills of his childhood. Together we enjoyedexploring other parts of England and Europe.We travelled down the Rhine, fell in love withSwitzerland and attended the Edinburgh Tattoo.The happy memories of those six months willstay with me forever.

Back in England Roy began experiencing a lot ofpain in his right hip. Whilst we were grateful allRoy’s medical expenses were covered, since hewas a British national, xrays confirmed Royneeded an urgent hip replacement operation.Five weeks later, after returning to Australia, thisis what happened.

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Roy’s convalescence was good but slow. Since hehad always been the one with the ‘green thumbs’it fell to me to look after the garden. Althoughour son did the extensive mowing, we soonrealised maintaining the garden and familyhome, as well as caring for Roy, was too muchfor me so the search began for a more suitableplace to live.

After eight months of looking, we sold the houseand moved up from Port Fairy to Warrnamboolinto a unit that better suited our needs. Despiteoperations for a prosthetic right hip and later, leftknee, Roy became more mobile and his generalhealth improved. However in 1997 he sufferedsevere spinal pain, this time in his lower back.Roy was referred to a pain specialist, who wasalso the palliative care doctor for the district.While he responded well to laser acupuncture,the pain returned even more severely when thetreatment ended, so it was decided he should beadmitted to the palliative care unit atWarrnambool Base Hospital (now South WestHealthcare) for pain management.

It was here Roy was introduced to massage bya palliative care volunteer, whose visits becamea regular and welcome part of his day. On homevisits she regaled us with stories about hergrandchildren. This was a welcome distractionfor Roy, who was struggling with pain controldespite the massages. It was during this periodthat I came to fully appreciate the support ofthe palliative care volunteers.

Early in January 1998, doctors suggested Royundergo radiotherapy so we made the necessaryarrangements to attend Geelong Hospital fordaily treatments for two weeks. As difficult asit was to watch Roy undergo the radiologytreatment, he took it remarkably well, and wewere able to use the time to tour the area,shop, walk on the beach, relax and generallyenjoy the break.

h of the time roaming the hills of his childhood

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Back in Warrnambool, Roy and I joined a ‘Livingwith Cancer’ program run by the palliative careteam. In such a friendly and relaxed environmentwe were comfortable discussing any issues wehad. Without the support of the group, I’m sureit would have been a more lonely and frighteningexperience to go through. As the weeks passed,I noticed Roy seemed to be bending at the kneesbut because he was free of pain I didn’t wantto question him about it. Early in March hecollapsed and had to be admitted to thepalliative care unit. Doctors sprang into actiontrying to get him stabilised to enable him togo home. Roy was now paralysed from thewaist down.

While Roy was in hospital an occupationaltherapist came to check our house, which we hadrearranged and fitted with equipment, includinga new bed, to allow Roy to return home in relativecomfort once his health improved.

By now our children had left home, and with noother family nearby palliative support for me –as Roy’s sole primary carer – was invaluable.Without it, I doubt I would’ve been able to cope.Another volunteer, Helen, was appointed, andlater a council carer also came. This allowed meto have ‘time out’ for weekly card games,shopping, church activities or coffee with friends.District nurses came twice daily and alsoprovided wonderful support.

Our eldest daughter came from Melbourne tovisit as often as possible. Our son who livedlocally saw Roy frequently, and I had a sisterwho travelled from Sydney twice to help outwhen things were getting tough. We also hadregular visits or phone calls from loving friends –so I’d have to say we were blessed with awonderful support network.

During that time Roy returned to the palliativecare unit on two occasions for respite care.The first time I stayed nearby, however, thesecond time I arranged to visit our youngestdaughter in Coffs Harbour. She had graduatedfrom university the week after Roy’s collapse andhad since accepted a job offer. Having reluctantlymoved away from her family and friends to takeup the position, she missed her father andworried about his health, so I felt a visit to herwould benefit us both.

From Warrnambool in Victoria my travel planswere disrupted, and I found myself stranded inSydney overnight. At midnight the phone rangwith news that Roy’s condition had deterioratedand I should return home immediately. I changedmy flights, returned to Melbourne, where I metmy eldest daughter and we caught the earliesttrain to Warrnambool. Helen met us at the

station and we went straight to the hospital.Our son was already there and our daughterfrom Coffs Harbour arrived later that day.

The following week was the hardest in our livesas Roy struggled through each day. Someone fromthe family was with him 24 hours a day.Sometimes Helen took a turn at sitting with himuntil the final night when we were all there,including a beloved niece who had come fromSydney to offer her support. Roy died on 6 July 1998.

To have Helen and a niece to support us in ourgrief with their love and comfort was a trulyprecious gift. My own strong Christian beliefsgave me enormous strength but the love,consideration and support given to me duringthat difficult time by the whole palliative careteam could never be overstated. I will be indebtedto those wonderful souls forever.

Having been encouraged to join the Cancer SelfHelp Support Group, friends from there were ofgreat comfort after Roy’s death, and the lovingfriendships formed with my volunteers continue.If I am able to bring comfort and peace to anyclient my work for palliative care will have beenworthwhile, and I will feel I have repaid some ofthe commitment shown to me. I find all I do veryfulfilling and rewarding. I feel part of the teamand enjoy interactions with other volunteers incourses, social events and meetings.

I hope my story will help in some way to promotethe work of palliative care in Australia.

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It is always difficult to know where to begin witha story like this so perhaps I’ll give you somebackground first.

My husband, Brian was diagnosed with a braintumour on 18 February 1999. He was 41 years oldand until then had been extremely fit andhealthy. We had five beautiful children and ranour own business. We had no idea that our liveswere about to be forever altered. A line in thesand had been irrevocably drawn for us on thatday in February; the ‘life before,’ and the ‘life after.’

Let me move on to tell you about the ‘life after.’

Brian was operated on five days followingdiagnosis and some weeks later began a courseof radiation and chemotherapy. During this time,we clung to the limited hope that was extendedto us. However, by October, Brian required furthersurgery, allowing him some respite until justafter Christmas. Around this time the pathologynurses suggested we call palliative care.

My first reaction was “But we don’t needpalliation.” I feared what this meant. But thenurses took the time to explain what palliationcould mean. I felt more comfortable when Irealised that palliative care was much more thanjust nursing a dying person – it was aboutholistic support and understanding, ensuringthat Brian could still ‘live’ as best he could in thetime he had left. The services offered by palliativecare other than nursing are also very valuable tothe whole family, not just the patient.

At about the same time I rang Brian’s oncologistwith concerns regarding his deterioration. Heasked me if we had ‘good support,’ which I tookto mean family and friends. He then said hewould organise something for us. I had no idea‘good support’ was a euphemism forpalliative care.

When I asked my GP why doctors are so reluctantto suggest palliative care, he said some patientsfound it too difficult to deal with. My feeling (andBrian’s too) was that as difficult as it may be, toknow the truth about the diagnosis and whatmay lie ahead was essential. Without suchknowledge decisions may not be made earlyenough so that as much as possible can be fittedinto the well time left – a simple continuum ofthe best possible quality of life until the end.

We also found that Brian was able to enjoy theother services palliative care offered, whilst hewas still well enough to appreciate it. In themiddle of March, just eight weeks before he died,Brian was able to join us at our daughter’sDebutante ball. One of the nurses helped batheand dress him and escorted him to the receptioncentre. She then returned some time later tocollect him and stayed with him until I returnedhome. It allowed me to help my daughter and

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Brian’s storyAs written by his wife Janine Sayers

It will be a memory that will be with us foreverother children get ready and we were all able toenjoy the evening, despite our difficulties. It willbe a memory that will be with us forever. Briancould not have shared in this precious familyevent without the invaluable assistance ofpalliative care. And the photos we have of thatnight, we treasure enormously.

Brian also very much enjoyed the massagetherapy offered right up until his death. Asa family, we really appreciated the work of thesocial worker involved with us. She helped Brianand I talk about the really difficult andconfronting issues we had to deal with regardinghis illness and impending death. We both knewwe had things we wanted and needed to saybut by ourselves we would just end up too upset.With a third party guiding us it was somewhateasier – we were then able to say things moreeasily and openly than when we were onour own.

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He felt comfortable in a way I had never seen before

The social worker also helped us make sure thechildren understood what was happening; thattheir father was very ill and not going to getbetter and would die. I found as an adult thatwe had to ensure we did not assume thechildren’s understanding, and that we mustlet them express their version of what washappening. As a parent, I learnt not to assumemy children’s thoughts and perceptions. They canreally surprise you with a depth of understandingthat we don’t often credit them with.

Although I mentioned earlier that palliative careis more than just nursing, I certainly cannotdiscount the wonderful support these nursesoffered us. I looked upon these people as angelswho would come and visit, medicate andreassure. They would laugh and cry with us.They gave me answers to questions I’d asked thedoctors but the doctors found too confronting toanswer directly. I had a need to know what would

happen and what to expect. The nurses answeredme honestly and clearly, which allowed me toproperly prepare for the difficult road ahead.

And Brian. I know he really appreciated the waythey took such care of him. He was, prior to hisillness a strong private person who kept hisfeelings and tactile nature confined to ourimmediate family. As he became ill he found thatit was okay to be touched by others. It waswonderful to see this man reach out and talk topeople and touch people in a way he couldn’tbefore. He felt comfortable in a way I had neverseen before – holding hands with men, and someof his friends would even kiss him. The nurseswith their easy manner gave him love and dignityto the end and I know this helped him in hispersonal growth. He and I had every confidencein their treatment of him and I was constantlyamazed how they were able to know what waswanted and needed and how they were able to

very carefully and gently get the doctors to see ittheir way – after all they deal with the dyingconstantly and very much acted in his bestinterests regarding his comfort and wellbeing.

Our whole family was included in Brian’s care.I have young children and they were very muchinvolved and encouraged to look after theirfather. They helped bathe him and would beencouraged to be part of the whole caringprocess. They were never frightened of theirDad or his illness because of their involvement,and no matter how busy the nurses must havebeen they always had time for us all.

Now to his death. I have to be honest – I wasfearful. How would I know when the time came?How would we cope? I used to read death noticesand marvel at families who had had someone‘die peacefully at home.’ I would wonder at theirstrength. My parents, brother-in-law and GP wereall fearful of him dying at home. How would

we cope? What scars would be left on thechildren? Would we ever be able to enter theroom he died in again? And what if we had to sellthe house in the future, how could we if Briandied there?

All of these questions and more conspired toconvince us that Brian should die in hospital. Soa fortnight before Brian died, palliative careorganised a bed in a local private hospital as wefelt his death was imminent. But after a littlewhile in hospital, we worked out that home wasindeed the best place for Brian. The nursing hegot at home between the palliative care teamand myself was far beyond what he received atthe hospital. And Brian did really want to die athome. So we took him home, for the last time.We were frightened of death but as the socialworker put it so succinctly “How could you befrightened? It was Brian after all.”

The morning that Brian was dying – I knew.The nurses had told me there would be signs:his breathing would alter and his extremitieswould go a musky colour. So when I noticed thisI called a nurse and she confirmed myobservations. So I kept the younger childrenhome from school and called the others backhome. The younger children helped bathe himagain – he even woke up. He couldn’t talkalthough he tried. But he held our hands and herubbed our faces. He knew right to the endwhere he was and who we were. I expect it was agreat comfort to him. After he settled again Ispoke to the children – one in particular had toldme how frightened he was and he preferred hisDad die in a hospital. But we all agreed he lookedso comfortable and at peace that we left himwhere he was.

And so Brian died peacefully in our lounge room.The children spent the morning and early

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The fact that Brian couldn’t be saved was indeeda huge shame, but what people gave to us wasvery special.

I remember saying to a nurse later that I felt wehad done a “bloody good job.” The illness Briansuffered was a terrible one, so aggressive anddebilitating. And we have all been robbed of avery special person, husband, father, son andfriend. But we have also gained so much fromBrian and those people who came with us on ourjourney. Palliative care gave us so much. The teamgave Brian the nursing and the care he needed.They gave the rest of us the strength to see itthrough – palliative care became part of ourfamily and a very necessary part. They saw uswarts and all and were never judgemental orintrusive. As I said before, they were like angelswho would appear, see things right and thenleave us to be a family again.

afternoon coming in and out of the house –they played outside and inside, until he died. Oneof them even worked on schoolwork at the footof Brian’s bed. None of us were fearful. Briantaught us a lot that day. I am sure the dying havea lot to do with how and where they die. One ofour sons had to be collected from Warragul thatday and he was home only minutes before Briandied. I am convinced Brian waited, and then hepeacefully slipped away.

We called a nurse and informed her that Brianhad died. She came back and bathed him again –again with the children’s help. She then left usand told us not to send him away until we wereready. As we let people know, many of them cameto the house. Many of them felt compelled totouch him and say their goodbyes. As a family westayed with and touched and kissed him forhours. It was truly a beautiful healing experience.

We have no fears of that room at all, and whenthe time comes to move on, I know his spirit willcome with us. The nurses always said we coulddo it, but I didn’t think we could manage such amonumental thing. However, with their help andBrian’s guidance we did indeed manage. Thenurses were never judgemental – even thoughthey knew home was the best place for Brian andall of us, they would have supported our decisionto send him to hospital if we couldn’t cope.But I’m glad we didn’t.

Interestingly, when our GP arrived he was takenaback at what he saw. He admitted his lack ofexperience with death in the home and later toldme he doesn’t like palliative medicine. When Iasked him why, he answered, “Because they die.”I felt sad for him that he couldn’t take somethingpositive from the experience of death. His inputhad been great and very caring and necessary.

doctors regarding Brian’s treatment. In the endI was his advocate and had to act on his behalf,based on discussions we’d had earlier and myyears of knowing him as no one else did.

I encourage people to speak up (even with theironcologists!) even though this is somethingI would never have done before. If you feel unsureabout what you think, then ask someone beforespeaking out. Again, I found the palliative careteam invaluable with their insights. I would sayto them “This is what I think – does that soundreasonable to you?” Then I would find thecourage to speak out to those who believed theyknew best for Brian.

Palliative care is something not to be feared butembraced, if the need arises. I know my familywould not have coped nearly as well physicallyand emotionally without the team. The palliativecare team taught us not to be afraid and helpedus find strengths we never knew existed.

One of the things I wanted to do was help otherssee this from a personal, ‘normal’ persons pointof view. Not from a professional view. The nursesalways said we could cope. I didn’t think wecould, so if I can help others see that it can bedone and done well, then Brian’s death can havesome meaning. Our experience has been a tragicone – but it can’t be for nothing. And one way tomake sure it’s not is to pass on what we havelearnt to someone else. If I can help demystifydeath and dying in some small way then it won’tbe futile.

I hope the reader finds my story helpful. I havefound writing this quite difficult at times and I’msure it has taken me so long to do because of theenormity of the subject. There is so much to feeland think – writing it down has been somewhatconfronting and draining, but maybe somedayI’ll find it healing too.

Thanks for the opportunity to pour my heart out.

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The respite care offered was also a welcome reliefthroughout this time. Caring for a dying personis emotionally and physically exhausting, andI needed the respite to remain strong for Brianand our children.

I wanted to tell our story because I don’t thinkenough is done to demystify illness and death inour society. The doctors don’t always help withtheir approach – so many of them let their ownfears influence them. One thing I learnt is thatprofessionals are people too. They bring withthem their own prejudices, cultural backgrounds,personalities and fears. We tend to think theyknow what’s best for us because of their trainingand experience – but this is not always so.Especially when it comes to dying. What you feel,whether you are a professional or not, is valid.I found it important to say what I thought – toask questions and even say “no” to some of the

Seven years ago (on Daffodil Day!) my 25 year oldson Alex was diagnosed with bowel cancer.He was engaged, and he and his fiancée wereexpecting a baby. Such a young man, full of hopeand ambition, love and... life. You just never knowwhat is around the corner.

What came next was a series of challenges andinspirations – borne out through his family andAlex himself, of course. Many of these challengeswere made just that bit easier with theassistance of palliative care workers, whoultimately offered us the ability to grant our sonhis final wish – to die at home, surrounded bythose he loved. A simple wish, yet sofundamental in this, his final journey.

Not long after his first diagnosis, Alex had amajor operation to remove his large bowel andsome of his small bowel. He was sent home withan ileostomy bag, and it was amazing for all ofus to see how well he coped with this – it wasa big ask for a young, strong man.

Unfortunately, five weeks after the operation,Alex had to go back into hospital as his smallintestine had stopped working. The cancer hadtaken over.

Alex did not want to die in hospital and stated hewould rather do so at home. Home meant at my(his mother’s) and his stepfather’s house,surrounded by all his family and friends. We weretold at the hospital that we would not be able tocope – but they were proved wrong!

His sister, my daughter Sally, is a registered nurseand she took leave without pay from work. Hisbrother, my son Paul, also took leave without payso they could help care for Alex. The impact ontheir finances was great, but it was the mostwonderful thing to witness as the bond betweenthe three children became so strong. I shall beforever grateful to my children for putting loveabove all else.

As soon as Alex arrived home, Sally went toDaw House Hospice and they gave us enoughmedication to last until the palliative care teamwere able to visit to assess Alex’s needs withregard to pain relief. They then liaised with ourfamily doctor and also the Adelaide HillsCommunity Nursing Service. Each member ofthe household were given instructions on how toadminister Alex’s medication, and it didn’t takeus long to become quite good at this.

Alex and Jayne (his fiancée) decided to getmarried, so on the 13 October a sad but joyfulservice was held in our garden. Four days later,their beautiful daughter Bianca was born andAlex was able to be present at the birth. TheWomen’s and Children’s Hospital in Adelaidedid everything they could to accommodate Alexand Jayne, including giving them a room withan extra bed in it so that Alex could lie downwhen he got tired.

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Alex’s story As written by his mother Jayne Turner

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their beautiful daughter Bianca was born and Alex was able to be present at the birth

Alex decided he would like his funeral before hedied, so on the 25 October 1998 everyone came tosay goodbye – it was the most moving, emotionaland happy day that you could ever experience.

On the 3 November 1998 Alex passed away at4.45pm. We kept his body with us for about fivehours, which was very important so we, thefamily, could say our special and privategoodbyes to him.

None of this could have happened without thehelp of the family, palliative care team, familydoctor and the Adelaide Hills NursingCommunity, who were prepared to help Alex diein the manner and surroundings he wanted. Alexwas able, in some ways, to take control over hisdeath. He took control of the last few weeks ofhis life, and we certainly had some incredible andunforgettable times together during that period.

If he had been in hospital none of these specialevents would have been able to take place, andI do not believe that Alex’s pain would have beenmanaged so well. I feel so passionately about theneed for people to be able to die at home, thatI have joined the Palliative Care VolunteersSupport Group. I hope, with all my heart, thatI can pass on my experience to as many peopleas possible and help them die surrounded by thepeople and places they hold most dear.

The relatives/carers need as much support asthey can get and the more information theyreceive the better it is for everyone. I am sure thatmore people would be able to die at home ifmore provisions were made for carers whousually work, but have to take leave without payto care for their loved ones. I feel sure that ifthese provisions were made, more people wouldchoose to die at home.

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I have enclosed a piece of writing by Alex. Everymorning he would get up, before the rest of thehousehold was awake and add to the piece. Hemade his journey so wonderful and special for allof us, as he was never angry or afraid. He eventold me that he was really looking forward to hisnext journey in life. He was such a special personand has left behind many memories, and ofcourse his beautiful daughter, who looks, speaksand acts just like him.

I sincerely hope that more funds will be madeavailable in the not so distant future, so thatother families will be able to experience whatwe did – death as a gracious part of life.

I believe that my soul and spirit will be released,but I will have no conscious thought, andtherefore I won’t be looking back wishing thatI was doing things that others were doing, whichallows me not to be sad now. Others are thinkingabout me as a parent and realising all of themoments I will miss out on, but I will not missthem because I will not be here.

However if my wife, family or friends wantme to be with them, I still can and will be,on a spiritual level.

on the road to dyingBy Alex Collins

The pros of knowing that you are going to die:

Getting to say goodbye to everyone.

Tell people how much you care about them.

How you get to build bridges.

Inspire people.

Encourage people to love one other.

To recognise deep long-standing friendships.

To feel good about the life you have lived.

It makes me feel special.

Could I really do justice in recounting someone’spersonal story, when all of my experiences werewith people who often only had a short timeto live? This was the question I kept coming backto when I was asked to write a story about oneof my experiences as a Cittamani HomeHospice volunteer.

Despite having spent many hours, with countlesspeople over the seven years I have been avolunteer, I realised that because I usually stayedovernight with patients (to give their carer orfamily some respite so they could get a goodnights sleep) I had not really gotten to knowpeople as intimately as other volunteers whohelp during the day, sometimes over a period ofweeks or even months. But as I recalled the manyfaces, the humour and bravery of the wonderfulsouls that had come into my life, albeit fleetingly,I knew there were many stories worth telling.

Would I tell the story about Betty, who was beingcared for by her two sons – both young men intheir early twenties, who were lovingly caringfor their bed-ridden mother in her last days?I remember when they told me, “she looked afterus when we were babies and helpless, now it isour turn to look after her.”

Would I tell the story about Ted, dying of throatcancer and couldn’t communicate who wasbeing cared for by his wife June? When I arrivedlate one evening to stay overnight, I could tellJune hadn’t slept in ages. Despite her tirednessshe still put Ted’s wellbeing ahead of her ownsaying: “Ted has been through so much. I don’twant him to go back into hospital. He wants tostay at home and die in familiar surroundings.”

And what about John, the devoted brother, caringfor his sister Hazel who also wanted to die in thesurroundings she loved?

Would I tell the story of the brave young man inhis early twenties, who was being cared for by hisdevoted parents, or would I tell a funny story ofmy overnight closely watching a husband whowas dying of a brain tumour and was determinedto escape?

Suddenly all the people I had shared experienceswith came flooding back. As you can see it wouldhave been folly to try and write about any ofthem individually. Collectively though, I realisedall of my untold stories had a familiar theme.A loved one was dying. They and their familieswanted them to die at home surrounded byfamily and familiar things. For the person dying,it was important to have someone who lovedthem with them at all times – sounds so easy intheory but not always in practice. In most casesI was able to see the wonderful team of family,doctor, Cittamani nurses and volunteers allworking together making sure the family andpatient never felt alone.

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Judy’s storyBeing a palliative care volunteer

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the special bonds that develop between the volunteers and families.

It is truly a great privilege to be a palliative care volunteer.

It is quite awe-inspiring to have seen familiesplumb the depths of their energies and emotionsand find resources they never knew they had.All of these families, after caring for their lovedone at home, allowing them to die in familiarsurroundings, said they would do it all againif they had their time over.

For myself, the thing I find so special is that I getto see people as they really are, and I can be whoI really am. There is no veneer, just honesty andtrust. There is no room for being false – there isjust no time. The obvious pain of those I visithelps me to confront what is real and essentialin life. Being able to support families who areoften exhausted, stressed and having difficultyaccepting what is happening with their lovedones is a very humbling experience.

So my story is not of one individual episode asa palliative care volunteer, but of all the familieswho have shown the common thread of courage,love, care, devotion and personal growth, thecompassion and skill of the Cittamani nurses,who are on call twenty four hours a day, sevendays a week, and the special bonds that developbetween the volunteers and families.

It is truly a great privilege to be a palliativecare volunteer.

When asked to pen this piece, I thought of all theother contributing writers and the sadness wemust share. I am glad to offer my story becauseI know that when people think of death anddying, they often think of older people… but ourdaughter Jessica died when she was only threeyears old. This is her story...

Jessica Lorraine Sutherland, our beautifuldaughter, was born a healthy, happy, and muchwanted baby girl, on 24 July 1998. Jessieprogressed through the normal stages in herfirst years, walking and talking like other children.She was a very happy girl with a kind heart, wholoved us reading her stories at night, playing withher baby brother Jay, and watching her favouritevideos, in particular ‘Winnie the Pooh’ and‘Bob the Builder.’

Jessie lived for Friday, which was her playgroupday. She had so many dear little friends, andthose childrens’ parents also became closefriends to our family, as our bond developedthrough the shared joys and laughter ofparenthood. Jessie’s other favourite pastime wasto go toy shopping and stopping for a babycappuccino – we could see her in future years,sipping lattes with other ‘trendy’ young people.So many years away, and so much time weshould have had with her before those days…but it wasn’t meant to be.

We moved into a new house just after Jessie’s3rd birthday in July 2001. We were a happy family,oblivious to what was going to happen in thenext few months of our lives. Jessie loved thenew house and loved playing in the playroom,and she just adored her new ‘Winnie thePooh’ bedroom.

Around the end of October, Jessie complainedthat she had a sore mouth and started sayingthat she felt ‘wobbly.’ It was then that I noticedshe was walking somewhat like she was underthe influence of alcohol. A couple of days lateron my birthday, I decided to take my son Jay tomy GP for his 18 month old vaccination. I alsomentioned to my doctor that Jessie was walkingstrangely. My GP observed Jessie walking and toldus we needed to see a neurologist urgently.

A couple of hours later on that birthday inOctober I was sitting talking to a paediatricneurologist at Monash Medical Centre. Hementioned that an MRI scan would need tobe performed and he booked her in. He said.“You know what we are looking for don’t you?”I said. “Yes, you are looking for a tumour.”He just nodded.

It was then that our roller coaster started.

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Jessica’s storyAs written by her mother Michelle Sutherland

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She was a very happy girl with a kind heart,

who loved us reading her stories at night, playing with her baby brother Jay

a cure. For soon, my other heart, my Jessie’s heart,would stop. I did appreciate the doctors notholding back on any information. I just wishedthat this was not happening.

Things moved so fast from there. We had ameeting with a surgeon who said he couldoperate to do a biopsy and try to remove tumourthat spread. We agreed to this, as she was soagitated and frightened. The pressure in her headmust have been unbearable. Jessica had a sevenhour operation on 2 November 2001 and spentthe next few days in intensive care. The doctordid remove quite a bit of tumour, but obviouslyhe could not go into the brainstem.

When Jessica came home six days later, shebarely talked and she could not walk. We receiveda phone call from Carol Quayle from thePaediatric Palliative Care Unit at the RoyalChildren’s Hospital, to discuss palliative care.

The very next morning, Jessica could not walk,her face had dropped to one side, and she wasdrooling and very hard to understand. We tookher back to the hospital where she was admittedand we waited in anticipation of her MRI scanto find out what was happening. The nightbefore the scan I was talking to Jessie in thehospital and I asked her if she hurt anywhere.She put her hand to the back of her head. Iburst into tears and said to myself, “Oh no, shehas a brain tumour.”

On October 2001 Jessie had her MRI scan. Thedoctors called us into a room and in that roomour lives changed forever. Jessica was diagnosedwith a brainstem glioma (GBM 4) which was very,very aggressive. I asked if she was going to dieand my heart almost gave up, on so many levels,when they responded that there was no hope for

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sang at Jessica‘s funeral. It was the mostbeautiful thing I have ever heard. We were alsogiven access to a counsellor who was lovely andmade herself available for any concerns we had,from our feelings of grief and the unknown, towhat we tell Jessie or her brother about whatwas happening.

Jessica had a couple of rounds of chemotherapyand after the second round, it became a strugglefor the doctors to find a vein. I hated having tohold her down, and try to get the oral medicinedown. Around the middle of January 2002 wefinally decided to stop the chemotherapy. Jessicawas having trouble sitting up so we knew thatthe tumour was on the move. The day wedecided to stop the chemotherapy we toldJessica that there was going to be no morehospitals and no more needles and that she wasgoing home forever. She gave us a smile. Butwithout having the support of the palliative careteam this would not have been possible at all.

Our palliative care nurse Paula arrangedeverything to do with the drugs to keep Jessicacomfortable. The nurses were on call day or nightand if I had any problems I could just ring andthey would come out. Fortunately, Jessica sleptwith me at night and was very peaceful so therewas no need for the nurses to come at night, butjust knowing I could call was very reassuring.

I think the most important thing to us and toJessica was that the nurses understood Jessica.They knew she didn’t like being stared at andsurrounded by people. Paula use to come in andsay hello to Jessica and then sit to one side andjust observe and answer any questions that wehad. Sometimes she sat with her and talked andplayed little games with her.

My first reaction was one of complete denial –for to accept palliative care was to accept, withabsolution, that Jessica was going to die. I alsohad visions of them taking Jessie away to die.However, we decided to meet with Carol and shecame over and discussed what palliative careservices could assist us with. I had no idea thatI could keep Jessica at home and that thepalliative care team could help us in caring forJessie. There were also other things offered that Ihad never even considered, such as musicaltherapy.

A nurse called Paula initially visited us once aweek, increasing her visits over the next fewmonths as required. We also started musictherapy. Jessie seemed to like the music,particularly banging on the drums. The musictherapist put a song together which I wrote and

The last few days before Jessie’s death weresomething I would never forget. I was not scaredof Jessie dying. I knew she would be at peace.I just wished she didn’t have to die to beat thisbrain tumour. During this time Paula was visitingevery day and advising me on the dosages of themedications such as morphine. She showed mewhat to do to make Jessie comfortable. It wasimportant for me to care for my daughter. It wasthe last thing I could ever do for her, and thenurses were there to help guide me every stepof the way. They were wonderfully supportiveand reassuring.

The day Jessie died Paula was at our home. Myson was asleep and most of our family had gonehome. It was a great comfort to have Paula therefor backup. I don’t think I would have been ascalm. Paula took our last remaining visitor intoanother room, and my husband and I were leftwith our beautiful girl as she commenced on

her new journey. Jessica died on 3 March 2002 at1.10pm. It was a beautiful Sunday afternoon andshe was on her couch watching television. Shedied in our arms so peacefully, held by her lovingparents, the way she would have wanted it to be;in her new house which she loved so much.

It was nice to have Paula to remove Jessica’snasogastric tube and at my request she helpedmy husband and I wash and dress ourbeautiful girl.

I would like to thank Carol Quayle for meetingwith us initially and explaining all aboutpalliative care and what it involved. I would alsolike to thank our nurse Paula Vincent who is anamazing person, compassionate andunderstanding. Thank you also to all the team atEastern Palliative Care. What was the mostdifficult time in our life was made just that tinybit easier and I am forever grateful.

Peace, perfect peace Jessie.

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When my husband Greg was diagnosed withlung cancer in August 2002, he was only54 years old. Although grappling with theemotional strain of what this diagnosis meant,I automatically presumed that because of mytraining as an occupational therapist, I would beable to provide the level of care Greg needed.However, I soon realised that this was not tobe the case…

Living in rural NSW, on a farm 50 kilometres fromthe major centre of Orange, help seemed out ofreach. It wasn’t long though before I discoveredthe wonderful staff from the local palliative careteam, and came to rely on them as a trustedsource of advice and comfort through the last,painful months of my dear husband’s life. The loveand support of our two daughters throughouttheir father’s illness was also a great inspiration tome as I came to terms with the inevitable loss ofmy best friend, and lifelong companion.

The doctors told us Greg’s cancer was operable,so we took Greg to Sydney and he had histumour removed at Royal Prince Alfred Hospital,where he was hospitalised for five weeks ofradiotherapy. Greg returned home in time forChristmas with the family, but soon afterdeveloped complications, and was admitted tohospital in Sydney, this time in St Vincent’s, for afurther three months. I was fortunate enough tobe able to stay with Greg the whole time andbecame his main carer within the hospital andthe rehab centre. However, this time the newsfrom the doctors was heartbreaking. They told usGreg had extensive lung damage – and had lessthan 12 months to live.

Greg was not able to return home until April2003, but even when he did, his body, ravaged bythe effects of radiation/radiotherapy, was sofragile he was on 24 hour oxygen, and wasunable to walk more than 50 metres at a time.

From that point on Greg’s health graduallyworsened, and by June he was re-diagnosed withanother tumour. Greg died at home in earlyOctober, just 3 days after his 55th birthday (thishas significance explained later in this story.)

During his last months at home Greg requiredtwo oxygen concentrators to keep up the supplyof oxygen to his weakened lungs. The need foroxygen was so great he was not able to managefor more than a few minutes at a time withoutthis precious, life sustaining substance. And, sincewe lived in the country we seemed to be moreprone to blackouts, so as a precaution we wouldalways need quite a supply of cylinder oxygen inthe house.

Aside from the oxygen cylinders, Greg neededother specialised equipment, which I was able topurchase before leaving Sydney using somefunds from a small life insurance policy. Theseincluded a Roho mattress and wheelchair seat;

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Greg’s storyAs told by his wife Gai Gibson

an electric hi-lo bed; special paddedcommode/bathseat and manual and electricwheelchairs. I spent three weeks in Sydneyrunning around purchasing these items fromvarious suppliers because many were difficult,if not impossible, to come by in the country.This was an emotionally draining period butI knew Greg would need all these things on hisreturn home. In hindsight, this was one of thebest decisions I made, as it was so much easierto care for my husband with equipment thatmade him more comfortable and independent.

When Greg and I returned home in April 2003I was able to go back to work on a part-timebasis, even though I much preferred to be athome with my precious husband. Throughout hisillness, Greg always encouraged me to maintainsome interests away from home and the farmand our daughters were doing an amazing job

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Gregalways wanted to be out and about

caring for their father. However, every time themobile phone rang, my heart would sink – whathad happened at home? Was everything OK?

Greg had developed severe nausea from timeto time, which we think was caused by highcalcium levels in his blood, and it had becomea frightening experience to see him in suchdistress. He needed to have a drip every month tobring his level down. We tried going to ‘dayprocedures’ on the first occasion but they didn’teven have a bed to lie on, just a very hard reclinerchair. Luckily for us the Palliative Care CNCoffered the use of the Cancer cottage for thenext two sessions – a real lifesaver.

Despite his illness, Greg always wanted to be outand about, and for close on five months this isexactly what he did. If it wasn’t around the farm,it would be trips to Orange to make smallpurchases for the garden, house or farm.

The effort of taking him out was enormous, butwas emotionally rewarding for us all. For whatwas once a simple trip into town we now neededto take a seemingly endless list of supplies,including oxygen cylinders; an oxygen conservingdevice; wheelchair; Roho cushion; mask, as well asnasal prongs; morphine nasal spray; Ventolin; andmobile phone in case of breakdown. A doctor’sappointment at 11:00am required us to make astart at 7.30am – the care was constant.

Shortly after Greg’s return from hospital, we werevisited by Helen, the palliative care nurse andJenny, the community nurse. Greg immediatelyenjoyed this first visit and was able to say exactlywhat he would like to see happen with his care athome. He wanted to die at home but not untilhis birthday and was reassured by the fact thatthese two ladies would do everything in theirpower to assist him achieve these goals. Fromthat day on, Greg looked forward to their visits.

Our daughters, Erin and Jess, and I also becamevery appreciative of their support for all kinds ofthings – medical, emotional and practical. I recallone occasion when Jenny arrived one weekendwith her husband, who gave Erin a lesson onchainsawing in the paddock – to help with ourwood supply over winter.

We were also very lucky to have another memberof the team who provided the medical care Gregneeded – a GP who did not insist on seeing Gregand took advice from the palliative care CNC orthe community nurse. These three wonderfulpeople became our lifeline in keeping Greg athome. Once Greg had decided he wanted to dieat home, they made it very straightforward andeasy to provide the care he needed. The supportand advice they gave us regarding medication,diet, and pressure care was a great help to mydaughters and I in providing the level of careGreg needed and deserved.

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At the beginning we were able to leave Greg athome alone for about 30 minutes, as long as hehad a back-up cylinder and a mobile phone athand. However, we all felt increasing discomfortleaving him alone, and tended to ensuresomeone was always with him. At this time Gregreally needed the three of us to be available toprovide his care if we were all to remain sane.

One of the major issues causing stress forGreg throughout his illness became hissuperannuation. Soon after his diagnosis –about 12 months before his death – Greg realisedthere would be considerable benefit to me if helived until he turned 55 years of age. Thisimmediately became his goal and by the timehe reached his birthday on 1st October, he lookedat me and asked, “Would it be OK to die now?”As I mentioned earlier, he passed away threedays later.

I tell this part of Greg’s story for a few reasons.Firstly, I believe it reinforces the significant role‘the will to live’ can play in terminal illnesses.Secondly the medical team and palliative carestaff were all aware and totally committed totrying to help Greg live until his 55th birthday.Finally, particularly for Greg, having a goalbecame a huge focus and reason for living.

Perhaps when people with terminal illnesses arereceiving support, focussing on achieving goals isa great comfort to them as they leave the world.It shows that there is still a goal– that dreamsshould never cease and that every day serves apurpose – even for the dying. For Greg, however, itdid come at a cost. The amount of anguish andstress we all experienced when things went alittle awry and it looked as though Greg may notmake his birthday was enormous. Keeping Gregin touch with his interests – his work, the farm,his family and friends – rather than always

focusing on medical appointments, medicationand his illness became an important part inhelping Greg survive as long as he did, andas long as he wanted to.

In hindsight I realise what a privilege it was tocare for Greg and would like to encourageeveryone who has someone terminally ill in theirfamily not to be frightened by the inevitability ofbeing with the person you love when they die –hopefully in their own home. Whilst it takes a lotof energy, there are many wonderful people onlytoo eager to help and support you to care foryour loved one at home. The amazing dedicationand guidance from the palliative care staff meantthe journey was far less daunting than it mightotherwise have been.

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Tasmanian Association for Hospice and PalliativeCare IncPhone: (03) 6234 7577Fax: (03) 6234 7566Email: tahpc@associationoffices.com.au

ACT Palliative Care Society IncPhone: (02) 6273 9606Fax: (02) 6273 9590Email: acthpc@bigpond.com.au

Palliative Care NTPhone: 0432 086 619 (Hon. Secretary)Fax: (08) 8948 5029

OTHER USEFUL CONTACTS:Commonwealth Carer Resource Centres:1800 242 636 (freecall*)

Carer Respite Centres: 1800 059 059 (freecall*)Lifeline: 131 114

* Freecall from local phones. Mobile calls at mobile rates.

For further information or assistance withpalliative care please contact your local memberassociation:

NATIONAL OFFICE:Palliative Care AustraliaPhone: 02 6232 4433Fax: 02 6232 4434Email: pcainc@pallcare.org.auWebsite: www.pallcare.org.au

Palliative Care New South WalesPhone: (02) 9282 6436Fax: (02) 9212 1827Email: info@palliativecarensw.org.auWebsite: www.palliativecarensw.org.au

Palliative Care Queensland IncPhone: (07) 3391 2900Website: www.pallcareqld.com

Palliative Care VictoriaPhone: (03) 9662 9644Fax: (03) 9662 9722Email: info@pallcarevic.asn.auWebsite: www.pallcarevic.asn.au

Palliative Care WA IncPhone: (08) 9212 4330Fax: (08) 9212 4330Email: pcwainc@palliativecarewa.asn.au Website: www.palliativecarewa.asn.au

Palliative Care Council of South Australia IncPhone: (08) 8291 4137Fax: (08) 8291 4122Email: pallcare@adelaide.on.netWebsite: www.pallcare.asn.au

a journey liveda collection ofpersonal storiesfrom carers