Stories About Palliative Care

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We would love to hear your experience and how it helped you.

Mom was in and out of hospital thirteen times in five months and the need for transfusions was becoming ever more frequent.  She would become confused and anxious during the hospital stays. Her quality of life was severely affected and we finally decided on no further treatment. 

Mom insisted we visit various care homes where she could be taken care of – she realised it was going to be quite a task for me to carry on working and also take care of her – but we convinced her that home was best although she was never comfortable with the carers sharing her space!

Mom had been so fit all her life that she struggled, at times, to understand what was happening to her and why she didn’t have the energy to do things anymore.  The most difficult part for me was when she had episodes of delusion. On reflection, what upset me most was that friends as well as neighbours in our block of flats became aware that all was not well.  The stigma around mental health problems!  I was very grateful to have a palliative care doctor who came to assess what might be causing the anxiety and to investigate the extent of the delusion.  

In my experience palliative care at home is challenging but I am so glad that we managed to keep her at home in familiar surroundings right to the end.  Mom had signed a living will and she had refused chemotherapy some years back. She had also lived a full 90 plus years, so we were secure in the knowledge that palliative care matched her wishes for her final months even though she was not able to articulate that wish towards the end. 

Pam, June 2019

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My dear sister was diagnosed with colon cancer in May 2018 and she passed away four months later, aged 64 yrs. Nothing could have prepared us for this shock and fast progression of the disease.

But the journey we walked together with the palliative team, allowed her to die with dignity, fully prepared. We felt this extra wrapping in a profound way. Never alone, always someone to call we were surrounded with so much love and kindness, in a most professional way.

From our first consultation after diagnosis with the palliative doctor and sister, we were put on the road of “what next”. Application was done for DiscoveryAIB. This was efficient and quick. A living will was drawn up which opened up so many areas we would never have thought of, to work through and discuss.

We were given time and space but never felt lost. The professional help and advice was amazing, from the smallest discomfort to severe pain. Everything was addressed without delay.

My sister and I were wrapped up and supported physically, emotionally and spiritually. Truly an amazing journey of palliative care at its best, which allowed a beautiful, peaceful death in her own home, with her family, never a day in hospital.

Regular home visits were done by the palliative care team, either the palliative care doctor or sister. The sister from the nursing agency who provided day and night carers over the last weeks of her life also visited.

This was truly a privilege to be part of. Thank you to an efficient, compassionate, dedicated team and Discovery Health for their unwavering financial support.

Louise, March 2019

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My ma is in Augustus 2016 op die ouderdom van 79 oorlede. Haar gestel was swak, hoofsaaklik as gevolg van chemobehandeling wat sy sowat 3 jaar voor haar dood ontvang het. Alhoewel sy die kanker oorkom het het die behandeling sy tol geëis. Die chemo het haar verswak en veroorsaak dat ‘n gewone verkoue haar maklik in die hospitaal laat beland het. Haar hart was verswak en haar niere se werking ‘n fraksie van wat dit behoort te wees. Sy was ook gedurig op antibiotika vir blaasinfeksie, wat bygedra het tot haar swak gestel. Sy is in Augustus 2016 in die hospitaal opgeneem en aan ‘n nier-dialise masjien gekoppel, en sy het nooit weer huistoe gegaan nie.

Die 6 maande wat haar dood voorafgegaan het was sy in en uit die hospitaal, en as sy by die huis was het sy meesal gelê, maar met ons gesels en min gekla. Ons het geen begrip vir die erns van haar toestand gehad nie, want daar was geen kommunikasie nie. Ons is aangesê om altyd eers die huisdokter te bel as sy swak lyk of sommer die ambulans. Terugdenkend besef ons vyf kinders dat sy dalk nog kon geleef het indien ons beter inligting gehad het. Nie eers tydens die 10 dae in die hospitaal het ons ooit die internis te siene gekry nie, alle kommunikasie was via die susters. Daar was slegs nou en dan ‘n doktor wat ons te woord gestaan het. Die susters het ook gereeld vir ons gesê dat sy al beter lyk en teen 31 Augustus vir haar 80ste verjaarsdag tuis sal wees. Op 19 Augustus het hulle in die nag gebel om te sê sy is oorlede. Ek het die vorige aand met die dokter oor die telefoon gepraat, en hy het kortaf gesê dat sy oud en siek is en ons moet nie te veel hoop nie.

In strak kontras met die ervaring het ons pa ‘n jaar later breinkanker opgedoen. Hy is in September 2017 gediagnoseer en het in Februarie 2018 gesterf. Ek besef dat dit ‘n terminale siekte is en dat dit makliker is om te voorspel wat kommunikasie en versorging eenvoudiger maak. Vandat ons die nuus ontvang het dat hy, op 84, terminale breinkanker het is ons ten volle op hoogte van sy toestand, simptome, die kanker se vordering, en sy lewensverwagting gehou. Hy is nooit gehospitaliseer nie en sy palliatiewe dokter het hom aanvanklik elke maand besoek (iets waarna hy vreeslik uitgesien het), daarna elke tweede week en gedurende die laaste maand weekliks en selfs daagliks. Die pakket van versorging, wat die palliatiewe dokter, sowel as personeel van die Hospice en versorgers ingesluit het, was nie alleeen van ‘n ongelooflike hoë kwaliteit nie, dit was ook persoonlik, “caring”, gerusstellend. Ons kon hulle dag en nag met vrae bel, en die reaksie was altyd vinnig en akkuraat, ook gedurende sy laaste 3 dae. Ons vyf kinders dink terug aan die maande voor sy dood met hartseer en vreugde, al sy wense is nagekom, hy het presies verstaan dat hy gaan sterf, en ons was gewapen met al die inligting wat ons nodig gehad het om te beplan, afskeid te neem en met die lewe aan te gaan. Darenteen praat nie een van ons vyf graag oor ons ma se dood nie. Dit was onverwags, onverdiend en vir ons, as kinders, wat inligting beter as emosies hanteer, was dit pynlik.

Anoniem​, Dogter

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My grandfather was terminally ill with Pancreatic Cancer. He was getting Palliative care and I tell you, we would not have coped if it was not for the team. They where there every step of the way, making sure not only that he was as comfortable as possible, but that we were informed every step of the way what to expect and how to cope. His final days the team was there with tremendous support and care. Thanks guys you where amazing.

Chantell, Granddaughter

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