Love to the end

By Fiona Basile, 2 July 2019

I was holding my beloved Nonna’s hand when she took her last breath. My mother, on the other side of the hospital bed, was holding her other hand; this was her mum. Nonna’s husband Salvatore was close by, seated in his wheelchair and being comforted by my Zia (aunt). One of my brothers, my sister and my father were also in the room. As the palliative care nurses and doctor tenderly checked Nonna’s vital signs and confirmed her death, we prayed for her soul.

We comforted each other and shared our grief. Though we were suffering a deep loss, there was peace. Nonna’s life had come to a natural end. And thanks to the skill and care of the palliative care team looking after Nonna, she died peacefully.

In those last days of Nonna’s life as her organs slowly shut down, the palliative care nurses regularly came in to check that Nonna was comfortable and not in pain. They also checked in with us, ensuring we as a family were taking care of ourselves and preparing for the final moments.

We were kept informed of Nonna’s progress, what to look out for and what the changes in her skin colour meant. We were shown how to gently dab the inside of Nonna’s mouth with a small damp sponge on the edge of a stick to keep her hydrated, and we too were kept hydrated with cups of tea or coffee and sandwiches, which were kindly offered by the hospital support staff.

In the final days and hours, we spoke to Nonna, stroked her hair, her arms and her hands. Gathered in the hospital room, we told stories, watched old family home movies and comforted each other. Nonna used to always say in her thick Australian-Italian accent, ‘I like the family to stay together’. Even in dying, Nonna brought the family together. We were unified in our love and gratitude for Nonna and for each other.

Death doesn’t happen in isolation. It includes extended family, friends and our work colleagues who knew that Nonna was in her final days. It also involved the nursing home staff who knew and loved Nonna in  the years she lived there, and the palliative care team who were on this journey with our family. People called in, they left phone or text messages: ‘Thinking of you and your family’, ‘Praying for your grandmother’, ‘So pleased you could be with your family and Nonna during this precious time’. It was indeed a precious and privileged time. It was a sacred time.

When Nonna died and it came time to leave the hospital room, knowing ‘this is it’, we each kissed her one last time and told her how much we loved her. We thanked her for all of her love and joy and for all she did for us. We’d miss her but never forget her, and we’d always love her. And it’s true. Six years on and Nonna still lives in our conversations and memories, in the photos we share, and most of all in our hearts. We are at peace, knowing she lived a full life and that she died a peaceful and natural death. She was 87 years old.

We are so grateful to the palliative care team for their medical expertise and professionalism, and also for their tenderness and care of Nonna and our family. In my mind, their actions are encapsulated in a modern version of the Hippocratic Oath.

One line in the Oath says: I will remember that there is art to medicine as well as science, and that warmth, sympathy and understanding may outweigh the surgeon’s knife or the chemist’s drug. The warmth, sympathy and understanding exhibited by the palliative care team will forever be treasured.

Another line says: I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick. And the last line of the Oath reads: If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.

The impending commencement of the Voluntary Assisted Dying Act on 19 June has given me cause to reflect on my own experience of the death of a loved-one and within the context of end-of-life care. In fact, I’ve had a second significant experience. Following Nonna’s death in July 2013, my grandfather, Nonno, died later that year in December.

They were similar circumstances. Nonno had been living in the local nursing home and everybody knew him. When his health quickly deteriorated to the point where he was bedridden, we were once again in the trusting hands of the palliative care team. They administered medication to ensure Nonno was comfortable and not in pain as the end of his life drew near.

Again, the family banded together to be in Nonno’s presence and to hold his hands and stroke his skin as he took his last breath. We prayed for his soul and shared our love for him and for each other. We once again expressed our gratitude to the palliative care team and nursing home staff for all of their love and care, within the context of their professional duties.

Since that time, I have come to understand that palliative care is not just provided in the final stages of life. Rather, it is for any person of any age who has been diagnosed with a life-limiting illness from the moment of diagnosis to the point after death when support may be needed for the grieving family. It is the provision of holistic care (including physical, psychosocial and spiritual care) and aims to provide the person who has the life-limiting illness to live comfortably and to maintain a good quality of life, for what could be many, many years.

There was a range of healthcare professionals and support people that played their role in caring for my grandparents. Palliative care staff includes doctors and nurses, psychologists, pastoral care workers, art therapists, music therapists, volunteers and bereavement support workers. Each brings their expertise, care and professionalism to ensure the person who is unwell is comfortable and able to live the best life possible within their circumstances. And they also provide care for the family, as was our experience.

Death isn’t an easy thing to face. Perhaps experiencing the death, or impending death, of a loved one is even more difficult, especially when there is pain and suffering involved. However, with the help and support of professional and caring palliative care staff and the support of many others, our family was able to share precious moments with Nonna and Nonno even in their final moments of life. We loved, respected and cherished them until their last breath. And in so doing, gave hope to each other that this is what it means to be human and to be loved. And in my view, this is what it means to have lived and died with dignity.

Ti voglio bene Nonna and Nonno.

 It was Palliative Care Week in Australia 19–25 May. Find out more about Palliative Care at www.palliativecare.org.au.

Fiona Basile is a Melbourne-based freelance photojournalist with a passion for words, photography and travel.

With thanks to Melbourne Catholic Magazine and the Archdiocese of Melbourne.

 

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