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Jo’s Story

Why I’m so passionate about the Anne Robson Trust

I feel as if the skills and experience I have built up over the years have all been leading to my role within the Anne Robson Trust.

I have seen death from many perspectives, as a nurse and as a midwife. Expected deaths and tragic unexplained deaths such as the loss of a baby. I’ve had various personal experiences too, and have been at the bedside of relatives as they died. These personal experiences varied greatly in how well everything and everybody around the death were helped, or not. One of the most poignant was my beloved grandmother who was left confused and frightened on a ward, and when we eventually got her home to care for her in her last days of life she calmed down, surrounded by love, and had a peaceful death.

I wanted to do more to help people in similar circumstance and came across Soul Midwifery. Soul Midwifery is an holistic approach to death – it is non-religious spiritual based care. So I will often use massage, visualisation and advanced care planning and when a combination of approaches come together I have been able to facilitate peaceful deaths. I don’t need to be there but passing on knowledge of small things that can help empower the family to be the ones sitting calmly with their loved ones as they pass, is truly a privilege.

So, when I started to work with Liz, the founder of the the Anne Robson Trust, I saw a kindred spirt. Someone passionate about improving end of life care. Someone with amazing energy who could galvanise all those around her, someone who made things happen. I decided to see if I could help her establish the charity by offering my time as an unpaid co-worker. With my background in nursing, the NHS and holistic health care I felt I could contribute. I gave up many of my other commitments to concentrate on the charity. At the same time, I continued to give time on a regular basis as a Butterfly Volunteer at the hospital where Liz first set up the scheme. Being with the dying and watching the positive impact of my own small contribution to the whole has reinforced my dedication. When I make a cup of tea for a relative that is so appreciated or give them a hug, I know I’m doing the right thing. The gentle squeeze of my hand as someone who has appeared to all who pass by to be unconscious, but when I gently say goodbye they thank me with that quiet acknowledgement. My passion starts with the patient in the bed.

Liz has put together a programme to implement a Butterfly Programme in any Acute Hospital. A practical scheme that is not draining the NHS of resources but enhancing the care they deliver by working alongside the management and the nurses. Bringing well trained passionate volunteers who sit with the dying, meeting and accepting them where they are and giving compassion and care to them – is a powerful thing.

It’s the most satisfying work I have ever done. I know the difference this charity is, can and will continue to make as we grow.

From the moment I stepped on to ward as a student nurse in my teens, it was the patients, their lives and stories that interested me. My memories always revolve around things they shared with me and not necessarily the illness or accident that we were treating them for. It was the same as a midwife, the details of the births may disappear but the personalities remain.

I tried hard to make a difference and leave someone happier or better in some way through my work. Grief and death were ever present in both nursing and midwifery. I found I had an aptitude for remaining calm and bringing that calmness to bear on patients and families.

Years later as a full time Mother I lost several close members of my own family and was present around or for their deaths. My godfather died accepting and peaceful surrounded by his close family in a hospice. One uncle died after struggling in a coma for 10 days as I sat with him. I had spent the hours prior to his death talking gently and giving him permission to leave. It was a profound experience. A few months later I was back on the same ward with my grandmother. She had vascular dementia and had suffered a heart attack and a stroke. She was very distressed and the ward found her difficult to manage. As a family, we could stay in the day room overnight in case she became difficult and we could be called to her bedside to calm her. It was truly dreadful, she was confused and upset, her emotional need or those of the family were not being met. My sister and I persuaded the Doctors to discharge her back to my sisters where we could take on palliative care ourselves. When granny came home she revived somewhat, and lots of friends and family could come and spend quality time saying good bye.

I learnt so much during this special time with Granny. People brought photos to show her spanning her life. We gave her foot massages, we read poetry and Bible passages, we laughed and we cried. We had little emotional support as we had no specialist palliative care environment, all the medical staff expected her to die within hours of returning home. It was in fact two weeks. The one thing that kept me going through it all was one comment by a health care worker who was coming in to help wash and make Granny comfortable. She stopped me, looked at me and said, “You know you’re doing a good job, don’t you?” I said, “Are we really?” her reply was one I’ll never forget “Yes, you are I go in to lots of homes at this stage and you are doing a brilliant job as a family”. Having someone reassure me like that, who did know what they were talking about was all I needed and I clung to that when things got hard.

Surely, I thought there had to be a road map for people in our situation. Not just the medical side but the emotional, spiritual side too. A few years after Granny’s death I found Soul Midwifery. It was indeed a way of looking at death as a normal process and looking at the physical, spiritual and emotional side of supporting someone dying. I trained to become a Soul Midwife. It all made so much sense of my experiences and I was fortunate to find a beautiful friend to work with as a Soul Midwife. I heard her life story and I got to know her family, we developed a visualisation, I gave her back massages, and we prepared for the end. She was determined to die at home despite living alone. She died peacefully at home one night in the arms of her daughter. Her daughter said to me afterwards “thank you for allowing me to be the best daughter I could”.

When I first came across the butterfly scheme I was working as a massage therapist at a local hospice. The hospice was closing for a period so I decided to use my time and skills to help people in a different way. I trained with an amazing diverse group of people. I could see the work and our experiences were building to an overwhelming sense of how important the work is to all. I believe it is making a difference where a gap currently exists. As a team of volunteers Butterflies have time, they with anyone who wants them and no one needs to die alone. Even being made a cup of tea if you’re a relative is a kindness that is remembered long after. Sometimes I can feel someone who is very near the end relax and become peaceful, it’s so amazing, just time and a gentle presence is all that is required.

I firmly believe that no one should die alone and this service can make a huge difference. It’s not just the patient that benefits. Staff also appreciate the time we spend at the bedside. Nurses are so busy with the care needs of the patients they just do not have time to sit quietly for half an hour or an hour. Relatives also benefit, from time to talk or breaks. They know if they leave the bedside someone who cares will still be there to sit with their loved one.

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