Sharing an unfamiliar stretch of road

Hospitals frequently dominate the news agenda but the dedication of key staff to patientsand colleagues is often unsung. Hospital chaplains support people facing themost difficult times of their lives. The Revd Alistair McCulloch, Lead Chaplainat The Royal Marsden NHS Foundation Trust describes the privilege of sharing the journey.

On Monday morning I had a call from our Intensive Care Unit; a young man in great distress needed to speak with me. I arranged to meet with him and we sat together in my office. He began to share his story with me: His partner had been diagnosed with a rare cancer just six months ago at about the time they had planned to get married. She had rapidly deteriorated and was now being treated in Intensive Care. They still wanted to be married and it seemed important to do this as soon as possible. I gently explained the process to him and together we went to get the necessary paperwork. They were married the following afternoon with much relief, but today she is exhausted and the future seems uncertain.

The same afternoon I found myself in a conversation with a woman who had just been told that there were ‘no further treatment options for her’ and that she had only a few months left to live. She particularly wanted to talk with me about what would happen to her when she died and asked me more than once: ‘Do you believe in heaven?’ As she began to share her story with me it became clear that her anxiety was not really for herself but rather for her husband who had himself died from cancer within the last few months. She was missing him desperately, especially because she was now unable to share the news of her devastating diagnosis with her lifetime friend and soul-mate. Her anxiety was for himand to know that he was in heaven so that when her own time came she would be at peace in the knowledge that she was going to join him there. It was lovely to be able to re-assure her appropriately and to tell her that ‘whether we live or whether we die’ we are all equally held by God, and held in his love for ever.

We also care for staff: A few months ago one of our team of receptionists was taken ill and after a while in hospital she sadly died. Her close-knit team of colleagues was devastated and many others throughout the hospital were shocked and upset. I know many of our staff really well and soon came to realise that we needed to mark this sad event somehow. Together with the team of receptionists, I organized a memorial service in the hospital chapel which was to be a celebration of their friend’s life. When the time came last week we had a chapel full of her colleagues representing many different professions throughout the hospital. We listened to her favourite songs and to the story of her life; we lit candles for her and said prayers. Of course this was a sad occasion but the mood was also positive, hopeful and, above all, healing.

There is nothing unusual about any of these encounters. For a very brief time, sometimes for a few days or weeks, we share a hard part of a journey with someone. We may be able to give practical help; we may be able to re-assure or to help to improve perspective; we can always listen.

In our chapel at the Royal Marsden Hospital in Chelsea we have an icon of St Luke. It is a modern work in a traditional Greek style and shows the saint at work on his great gospel of healing. His book is open at the story of the disciples meeting with the risen Christ on the road to Emmaus. As they were talking we are told, ‘Jesus himself came near and went with them.’ (Luke 24, 15). Chaplains embody this loving presence – this sense that Jesus is with us on the journey. We do not need to invite him to join us on the road. He is with us already whether we recognise it or not. The main thing is that, like Jesus, we share this unfamiliar stretch of road as a fellow travelling companion. PeopIe trust us and draw us into their lives in a way that, even after many years as a chaplain, I still find to be a huge privilege.

The Revd Alistair McCulloch
Lead Chaplain at The Royal Marsden NHS Foundation Trust

To protect confidentiality some details have been changed

How chaplains and the Mothers’ Union support dementia patients in hospital

Regular visits to hospital can be stressful times for people living with dementia. The Revd Peter Wells, Lead Chaplain at Brighton and Sussex University Hospitals NHS Trust, describes the ‘ministry of presence’ chaplains and volunteers offer.

 A phone call from a relative: “Could you please visit Mum, she’s in the dementia unit. I don’t suppose she will know you’ve called.  She used to go to church and we think it might help her if you visit.  Nothing seems to help her but you never know. Many thanks”.

A conversation with one of our volunteers: “Why do we bother to visit people on the dementia unit?  what is the point if they don’t respond, don’t remember and don’t seem to take much notice”?

A chat with the ward staff: “Mrs Smith does not recognise her family any longer. She stares into space.  She smiles but nothing else.  It all seems such a shame and so disappointing for the family”.

The visit to Mum, Mrs Smith: “Hello Mrs Smith, I’m from the chaplaincy team. Your daughter asked if we would visit. Apparently you used to go to church. ( no response except for a brief smile. )  I thought I would read the Psalm 23 and read the words of a couple of favourite hymns.   I hope this is OK with you’?  The Psalm and hymns are read.  The response, little more than a smile.  We sit in silence for a while. “Mrs Smith I am going to go now.  Please be assured that you will be in my prayers.  One of us will pop in over the next couple of days.  We will keep on visiting as long as you are with us”.

The response is not so important.  What is more important is the recognition that here is a meeting of two people made in God’s image.  None of us is the perfect image of God.  We meet each other knowing that no one is perfect.  We meet each other on this journey called life.  Whatever happens to us, people deserve to be met.  Everyone has a life to be honoured.  Everyone has a life to be acknowledged.

The chaplaincy is a ‘Ministry of Presence’.  Being present with anyone and everyone.  Acknowledging our shared humanity, and shared createdness, our shared journey.  A presence that is as much for the patient and relatives as it is for the staff.

Mothers’ Union groups help us with the recognition that people with dementia still need to be valued, and when it is hard for the family and friends, we offer our support.  One MU group makes the most wonderful and inventive ‘fiddle-muffs‘ so that patients can feel, stroke, pull, hold, cuddle a muff made out of different wools and materials.  Once given the muff belongs to that patient and to that patient only.  The muffs can give a sense of comfort, control, value in a world which appears to have lost its meaning.  Men or women can use the muffs but the muffs seem to be more popular with the women so ‘switchboards‘ have been made for the men with switches, buttons to pull and press.  Relatives and staff are so impressed that people have taken the time to make the muffs and boards.  Someone has bothered to think of the needs of others.

Another MU group bakes a cake once a week that is kept for a weekly tea party on the dementia unit.  Real home-made cake, a taste of home for patients and relatives.

A ‘Ministry of Presence’ in so many ways, whether outwardly in the form of chaplaincy team members and MU members, or in the form of cake, fiddle muffs or switch boards, what does it matter, as long as you do it to the least of those amongst us, you do it to Me, recognising the divine and human in all of us.

Revd Peter Wells
Lead Chaplain at Brighton and Sussex University Hospitals NHS Trust

Listen to David Primrose, Director of Transforming Communities at the Diocese of Lichfield on why dementia friendly communities are being prioritised in his area.