Stories of Compassion: Nicky’s Journey in Palliative Care

I want to share this life changing story because although I have worked at HPCA for five years  as Dr Liz Gwyther’s PA and have read and heard much about palliative care, it is only now through my Mum’s journey with cancer that I can fully say I understand  what palliative care is  and have now experienced it for myself.

My husband Dave and I entered 2014 with great excitement as we had planned our trip to the UK and the Isle of Mann to visit our daughters and their families. I had the added joy of going to meet my first grandchild to be born end of April 2014.

I had the strong feeling to invite my 90 year old mother who lived in KZN to come and spend two weeks with us in Cape Town over Easter before we left for the UK on 10 May. We always treated her visits as though they could be the last and this time we had the pleasure of taking her for a guided tour in the golf buggy around Kirstenbosch Botanical gardens, enjoying fish and chips at Fish Hoek beach on one of our special spring evenings. A real highlight was taking her to see Swan Lake ballet which she loved. The day before we had to admit her to hospital, we took her for a two hour ride in a wheel chair along Sea Point promenade and through Green Point Park. We decided to take the long way home through Hout Bay stopping to see a most spectacular sunset – little did we know that this would be my Mum’s last sunset.

Our dear Mum was the great family matriarch and we all loved her dearly. To honour her on the occasion of her 90th birthday in September 2013 all the family gathered in Cape St Francis to celebrate this big milestone. My daughter had made a photobook of her life with pictures of all the family and a message from each of us. This was a real treasure for her and in retrospect we are so thrilled we were able to express our love and appreciation when she was still alive rather than doing this only at her memorial service.

On Easter Monday after her wheelchair walk, my Mum who had lived a good healthy life woke up with terrible pains in her stomach and I admitted her to hospital. The Emergency Room was chaos. It took three hours to see a doctor with my mother sitting in the waiting room in real agony.  After another three hours of tests and x-rays we had her comfortably settled in the ward.

The following week was hectic. As the only daughter in Cape Town I had to take full responsibility of speaking to doctors, oncologists, making decisions, trying to understand all the medication she was on, visiting Mum two to three times a day, keeping all the family around the country updated and feeling very responsible for our great matriarch. After extensive tests they diagnosed Mum with final stages of liver cancer. As a family we agreed that chemotherapy treatment was not an option due to the Living Will which we had drawn up soon after I had attended a presentation at our HPCA conference the previous year on “The advanced care plan and living wills.”

Bear in mind that Dave and I were due to fly to the UK in two weeks’ time and we really did not know at that stage that “final stages of liver cancer” meant Mum would only have 10 days to live.  It was a bitter sweet experience as on the one hand I was excited at the thought of becoming a granny as my daughter was due her baby at this time and yet here was my dear Mum in her final stage of life.

Thankfully we have a very close knit family, and my two sisters and their daughters came down to Cape Town to support me in the care of Mum and to say goodbye before she took her final breath to be with the Lord Jesus she had faithfully served. It was a very emotional time and Mum went down very fast. We are grateful that we were able to share the news of the birth of her 10th great grandchild  three days before she died and in sharing this with her she  breathed her grateful thanks to the Lord.  A loving nurse friend of ours kept encouraging us to speak, pray and read the scriptures to Mum as she would most likely hear despite her being heavily medicated.   We spent many hours doing this and for the last three days of her life she was in a private ward so it was a real privilege as her children to take shifts to be at her side 24/7 and have special moments with her.

I have always admired the work of our hospices and have had to change my perception that hospices are not necessarily the place where people go to die. I have always been impressed with Liz’s passion for palliative care and how she constantly advocates that it is the right of every person on this earth to receive palliative care when they need it. This whole experience has given me a greater urgency to share the wonderful work our hospices do in providing palliative care.

I now would like to share with you how we as a family did experience palliative care even though due to Mum’s rapid deterioration and the public holidays she was not able to be admitted to St Luke’s Hospice.  My HPCA colleagues rallied around and supported us, firstly in getting Mum into the St. Luke’s system thanks to my friend and colleague Muriel and this resulted in a visit from the Community nurse who was a wonderful, compassionate person. We felt so at home with her and were able to ask pertinent questions and she was lovingly honest with us and so we were able to prepare ourselves for Mum’s imminent death.  Liz called to reassure me at times when I really needed that support and of course it was great to get advice from our Palliative Care Champion!  My  friend and colleague Zodwa Sithole called me regularly advising me on pain management and the morphine dosage. This was the first time I had seen a syringe driver and I now realize what an amazing piece of apparatus this is for pain management.  The Lord brought the right people along our path because over the weekend Mum was assigned a doctor who had trained under Liz and I knew we were speaking the same language and he certainly showed more compassion and listened to me! We had three different doctors in 10 days so this was very frustrating.

It was very hard working in the centre of the palliative care family and yet we had to be caught up in the unfeeling medical vortex and the lack of personalisation of the Mediclinic. I must add though some of the staff were very kind and reminded me of the old fashioned nurses we all know.  The rushed visit of the doctor each morning with a “no time to spare” attitude and the fact the first doctor would not let me join them when they explained to Mum she was terminal despite me telling them she suffered with short term memory and it would be helpful if I joined them.   

The worst experience was the lack of compassion when Mum breathed her last, the coldness of not being able to stay with her due to our lack of understanding of them wanting to prepare the body. May I add at this stage this was my first experience of being with someone as they died.  If she had been at hospice, we could have called all the family in Cape Town so they could have said their final farewell as they allow you to stay as long as you want.  Although the sister did convey her condolences there was no support at all, no offer of a cup of tea or being directed to a place of privacy so we were left weeping in the cold passage and public lounge.  The hospital counsellor had spoken to us briefly a few days before Mum’s death but she was nowhere to be found when we needed her. It was so lovely to receive a call from the St Luke’s community nurse just after Mum died and to hear her comforting compassionate voice and her promise to visit us later that day.

A few days later we visited St Luke’s and had a wonderful session with Sister Val Roman (Nursing Services Manager and Sister Jeanette Daniels (Community nurse manger) to thank them for the support we did receive.  They comforted and counselled us and we felt so uplifted when we left them and I had a new insight into the amazing people that work at our hospices.

As a family were very aware of God orchestrating everything so perfectly behind the scenes, not only in the timing but in bringing the right people along our path at the right time. We had strong prayer support from all over the country and my friends and work colleagues were very supportive. We would not have coped as we did, without our strong faith in Jesus Christ and being able to rest in the fact that He would comfort, support and help us through one of the greatest trials we would face as a family.

Although this was a very challenging and sad time saying farewell to my wonderful Mum, it has been  a journey in coming to understand and experience palliative care, seeing the hand of God in every situation, being blessed by the support of the palliative care family and all my friends, and been drawn even closer as a family. We now all aim to pass down the wonderful legacy our Mum has left us.