Beauty in unlikely places

Whilst on call one night I had a very strange call out to HDU. A patient who had been on ICU was now with them and aware enough to realise that her baby had been delivered still born while she was unconscious. She had requested to see the baby. She wasn’t well enough to be taken over to the mortuary, so the baby had been brought to her. She now didn’t want to give the baby back and the staff weren’t sure what to do. It was a Sunday evening and the other staff that might be helpful, like mortuary workers, wouldn’t be around until the morning. In desperation they phoned me.

When I arrived the whole family were visiting and taking turns to hold the baby. After chatting with them I said the baby could stay till the end of visiting time then I’d have to take him back. Mum was very reluctant. She was still a bit dazed and also had learning disabilities. That meant I wasn’t able to give her the booklet about what to do after your baby had died, as she couldn’t read. It was an extremely hot day. The baby needed to be put back in the fridge. My problem was how to explain this with other small children around in a way that wasn’t going to upset them.

I explained about the staff in the mortuary and what good care they’d take of the baby. I also explained that they would take some nice pictures if they wanted some. I went on to say how beautiful the baby was and explained that the only way to keep him looking so beautiful was to keep him cool. The 5 year old then asked me why. Oh dear! How was I going to answer that. I explained that we had blood going round us and we could drink nice drinks in this warm weather and that helped us keep cool but the baby couldn’t do that, so he would go all droopy like a flower that doesn’t have water, so the way to keep him looking so beautiful was to put him somewhere cool. The whole family accepted my explanation and allowed me to take the baby. I’m not sure it was the best explanation in the world but it was “good enough” for the time being and gave me the chance to take the baby away.

I went back to the ward after and spent some time with the mum alone. She was in hospital for weeks and that delayed the funeral. During this time she developed a good relationship with the mortuary staff and felt supported by the hospital in general.

This woman has been in and out of hospital since then and I have been able to support her with all sorts of things including filling in benefit forms for her and her 21 year old daughter who has become her carer. The role of a chaplain is extremely varied.

Shortly after this I met another woman who was struggling to come to terms with the loss of her baby but in very different circumstances. The baby was a very much wanted first child but the mum had taken the very difficult decision to terminate the pregnancy after a severe spina bifida was detected.

I met with mum before she delivered the baby. She asked me if I would bless her baby after she was delivered. I went back after the baby was delivered but mum was in a lot of pain and very tired after a very long and painful night. She asked if I would come back when she was feeling better. After talking to her we agreed to meet in the mortuary. She said for me not to knock but just go in when I arrived.

That day was one of those days. I was feeling tired and fed up. There were lots of demands on me and I was struggling to keep up with them. When I arrived at the mortuary the scene that greeted me was one that was so beautiful it stopped me in my tracks. The mum was cradling the baby and gently rocking her and reading her a story. The story was sleeping beauty and every time sleeping beauty was mentioned the mum changed the words and used the baby’s name instead. I stood behind her witnessing this scene with a lump in my throat.

Later when I was saying goodbye to that woman I thanked her for giving me such a beautiful moment in my day. A few years earlier I had been to a talk given by a Buddhist about beauty. He had said about how you could find beauty in everything, even the mundane like tying your shoelace. I had thought this was navel gazing in the extreme. I also wondered what beauty could be found in the death of a child? What that woman showed me that day was that there can be beauty even amongst the greatest sadnesses such as that of a death of a child.

It's ok to live until you die

As part of my wanderings through ICU I met a family who were there to support their very ill daughter. The daughter was asthmatic and was being ventilated after a severe attack. It was touch and go for quite a long time with this woman. The patient had three children of her own. Two of these children still needed looking after. The grandparents had come down from Wales and were staying in the daughters flat and looking after her children. They were both pensioners and were not getting any extra help in terms of money to help them in their plight. What they were finding difficult was the cost of travelling to and from the hospital. They had to come and go in order to meet the children from school and settle them and then return to the hospital. Their pensioner’s bus passes only worked in Wales and not in London. I said I’d see what I could do. It took me three weeks to sort out bus passes for them. It was like a head banging job. No-one wanted to take responsibility. It was maddening. If this couple had not come down to be with their daughter and take care of the grandchildren then social services would have had to look after the children. That would have cost a lot more than the price of a bus pass. In the end the hospital social workers paid for a weekly bus pass for the time that their daughter was a patient. This difficulty in getting through the bureaucracies of the system makes me wonder how many people slip through the net and don’t get their needs met. It’s extremely frustrating!

This patient was on a big roller coaster ride and several times it looked like she might die. She left ICU and went to HDU and came back to ICU again. Eventually she did leave the unit and went to a ward. My role with her then was to help her to live again. She had spent so long hovering between life and death that she now felt very insecure about living. She was even frightened to be out of bed.

I really enjoyed working with this family and getting the parents, especially the dad, to back off a bit and let their daughter live again. The patient eventually started to believe in herself. She knew she still had a long road of recovery ahead of her but she was beginning to think she could do it.

This woman came back to visit me several months later. It was amazing to see her. I nearly didn’t recognise her. She had put weight back on and looked really good. She told me that she took strength from my visits and that my faith in her even when she didn’t have faith in herself helped her get through what had been the worst experience she had ever had.

It was really good to get that feedback because so often as a chaplain you are working in a vacuum.

Suffer the little children to come unto me

Summer continued a pace and with it came a little lad on our PICU. He was 12 years old. He had a very big operation and lived somewhere in the Home Counties but had come because of UHL children’s surgery specialism. I had been chatting to his mum for a while about all sorts of things and I discovered that this young boy liked motorbikes. I started chatting to him about the various bikes I had ridden over the years.

Before I left I asked if there was anything that I could do. Mum said no but thanks for the chat, the young lad said there was something. I told him to spit it out, but he was a bit reluctant. In the end he said the one thing that he wanted was to be able to talk to his dad on the phone. I was slightly perplexed as to why this was a problem. Then he told me that his dad was in prison. I said I would do my best to see what I could arrange but no promises.

I phoned the prison and spoke to the chaplain there. He told me that he was aware of the situation but without external verification they had no been able to do anything about it. As I had phoned that was all the confirmation they needed. They then were able to get the boys dad and he had several chats on the phone despite the expense of patientline. The little lad was made up. He was so pleased to have spoken to his dad. He astounded the medical staff with the speed of his recovery. I’m sure some of that was down to him being content and feeling listened to and valued.

A few weeks later I got a card from this young man. In it he wrote:

“Thank you for your help so I was able to speak to my Dad at Elmley prison. Keep enjoying your bike. I hope to ride my mini moto very soon”

It’s so important, as far as I’m concerned, to be approachable so that people feel they can ask you anything and that you won’t sit in judgement over them.

Around this time I also got to meet a family whose premature baby was in NICU. This family had already had two other premature babies. One had lived and one had died.

I gradually got to know the family better and was able to support them through the roller coaster ride of the ups and downs that their baby son was taking them on. This family had no faith or religious affinities but I was able to support them despite our differences.

At one point it looked like they had turned the corner. The baby had moved further down the unit to the area where there is less intensive care and things were looking up. Then the baby worsened and started to go downhill again.

One very hot evening just as I was preparing to go home I came around the corner and literally bumped into the parents. They were extremely upset. I brought them into the office. Over a cuppa they told me that there was no hope for their now 4 month old baby. It had been decided to withdraw treatment. They had come away from the unit to try and get themselves together and to wait for their daughter to arrive with her grandparents.

One of the things about dealing with a religious family is that it gives room and a framework for a ritual. When dealing with a non-religious family you have to create your own ritual. Rituals are quite important to mark endings. I encouraged these parents to think about what they wanted to do or say to honour their son and wish him well in his death. They decided to think about it and go for a walk while they were waiting. At the door the mum asked me if it was right to bring their 4 year old in and let her be part of what was going on. I said I thought it was really important and that she had been visiting him and was looking forward to having a baby brother at home. She needed to be allowed to say goodbye. At this point the mum started crying again. I hugged her and she just sobbed, then her knees buckled and she sank to the floor. I sank to the floor and continued to hold her. She just kept crying out “I can’t do this again, I just can’t do this again” When I pressed her as to what she couldn’t do again she said she just couldn’t hold another baby while he died, that she had done that once before and she couldn’t go through that again. The dad also said he couldn’t do it. I was still holding her and trying to reassure her and she said to me “ You give such good hugs. Will you cuddle my baby while he dies?”

Inwardly I gulped, but outwardly I reassured these parents that I would do anything that they wanted that they thought would be helpful.

I went to the unit when all the family had arrived. I encouraged all of them to say their own individual goodbyes as well as a joint family goodbye. I encouraged them to tell the baby what they were going to miss about what they had wanted to do with him. I then stepped behind the curtains and allowed mum and dad to spend some private time with the baby. During that time I hugged a few of the nurses who were finding it all very sad, as they had nursed this little boy for four months, as well as the doctors who were present. After a while Mum came out and she left and went to the relatives room. Dad then held the baby as they started to withdraw and then when he couldn’t take it anymore he handed the baby to me.

I looked at this tiny baby who was the most precious thing to his parents and I thought about the amazing trust that this couple had put in me. I sang to him and gentle rocked him while he slipped peacefully from this world. What an amazing privilege!

What did I learn from all that? I learned that chaplaincy is a complex role. When I came out from behind the screens to give the parents some private time I wasn’t able to take a breather because my attention was then on the staff of the unit who were finding the situation tough. I also learned the importance of being around and being part of popular culture. My conversations with parents inevitably start with chats about “Big Brother” or the football or Eastenders, or Harry Potter or the Da Vinci Code. These are not necessarily things, except the football, that would have been part of my life before. They have value though. As I build a relationship based on these chats people begin to see me as a person. The clerical collar stops being a barrier. From there the relationship can deepen if necessary and I’m not a stranger who comes in and says a few prayers and goes in their hour of need.

I also learned the importance of looking after myself and having good and regular supervision. It was an immense privilege to be asked to hold this little baby and an enormous position of trust, but it wasn’t without its cost to me. I needed to go home from the hospital and be very gentle with myself and begin the task of processing the experience.

Can you hear me?

The following month brought along its own set of challenges. One of these challenges came in the form of a dying grandmother. I was called to the ward to anoint her and say some prayers at the families request. The son was hearing impaired and had a friend who would translate for him, his dying mother was also hearing impaired. The granddaughter was the only hearing member of the family, therefore a lot of responsibility had fallen on her shoulders. It was obvious from my first meeting with this family that there were some deep tensions within it. I said my prayers and left the family.

I was called later that night by the ward. The patient had died and the family wouldn’t leave the ward or the body. The situation was becoming disruptive to the other patients and it was late and people needed to settle down to sleep for the night. When I arrived I went behind the curtains and said some more prayers. The granddaughter was very distressed. I took her outside for a cigarette. She told me she’d never been apart from her grandmother and how could she just leave her. I walked her over to the mortuary and sat her on the bench outside. This young woman poured her heart out to me. All the pain and discomfort that she had absorbed from life over the years came flooding out. I was able to listen  and to honour that pain for her and acknowledge it in a way that nobody before had done. I then pointed out that we were at the mortuary and this was where we would be bringing her grandmother and that she could come back at any time to sit with her. She seemed to take some comfort from this and we agreed to go back to the ward and say our goodbyes for now.

She communicated her intentions to her dad and he got quite agitated. The noises he made that accompanied his sign language were getting very loud. He was insistent that the doctor had said he had to wait for a certificate before he left. What in fact had been said was that he could come back and collect a certificate.

This taught me a valuable lesson about communicating with hearing impaired people. It is very easy for miscommunication to occur and therefore essential that information is checked to have been received correctly. It’s ok to ask for confirmation of what has just been said.

It took me two hours to get this family to the point of being able to leave the hospital. It was worth spending that time because they weren’t angry when they left and therefore didn’t bring any anger back with them.

I was asked to do the funeral and I felt it brought completion. I also felt the hospital was seen positively because I was able to be part of each painful stage of them laying their relative to rest.

A couple of days later I got called out twice in the same night. I was very tired after this experience and it was the beginning of me having to realise the importance of pacing yourself as a chaplain.

And you held me - Janet Morley

And You Held Me

and you held me and there were no words

and there was no time and you held me

and there was only wanting and

being held and being filled with wanting

and I was nothing but letting go

and being held

and there were no words and there

needed to be no words

and there was no terror  only stillness

and I was wanting nothing and

it was fullness and it was like aching for God

and it was touch and warmth and

darkness and no time and no words and we flowed

and I flowed and I was not empty

and I was given up to the dark and

in the darkness         I was not lost

and the wanting was like fullness and I could

hardly hold it and I was held and

you were dark and warm and without time and

without words and you held me

Janet Morley

What do you think happens when we die?

In my last blog I mentioned about blessing a dead baby in my first month of employment as a hospital chaplain. During that same month another woman’s situation touched me. She was terminally ill. She was 61 and a wife and mother. She did her husbands books for the family business. She had been trying to hand things over to him so that he would know what to do when she wasn’t around. The problem was he wasn’t ready to accept the fact that she was dying. The woman was a churchgoer and had been referred by her vicar to the chaplaincy service.

She came into the hospital for symptom control but she was obviously dying and suffering. She was very nauseous and had an NG tube draining yuk from her system. I had chatted with her a few times but the other chaplain was seeing her mainly. Whilst I was stood there one day she just suddenly piped up “What do you think will happen to me when I die?” This woman wanted to be comforted at that point and reassured. How could I do that? I told her that I wasn’t completely sure but that I felt we went into the arms of a loving God. I told her I had a poem/prayer that I felt expressed what it might be like and I offered it to her as something that gave me comfort and I hope it was of some use to her. I gave her Janet Morely’s “And You Held Me” prayer. She told me she found it helpful, and she did seem slightly more at ease. She was moved shortly after that to the hospice.

And You Held Me

and you held me and there were no words

and there was no time and you held me

and there was only wanting and

being held and being filled with wanting

and I was nothing but letting go

and being held

and there were no words and there

needed to be no words

and there was no terror  only stillness

and I was wanting nothing and

it was fullness and it was like aching for God

and it was touch and warmth and

darkness and no time and no words and we flowed

and I flowed and I was not empty

and I was given up to the dark and

in the darkness         I was not lost

and the wanting was like fullness and I could

hardly hold it and I was held and

you were dark and warm and without time and

without words and you held me

Janet Morley

That whole encounter made me think about what do I really believe about death, dying and heaven. And also how can I express those beliefs. I was struck by the sincerity of her question and the importance that I answered it and didn’t dodge the issue because of my uncomfortableness.

Another learning experience for me was with a Greek speaking family. The patient was a young man who lived in this country. He had been involved in a motorcycle accident and was in our ICU.

Since starting work, one of the things I had taken to doing was wandering through ICU on a regular basis. It’s a hard place for relatives to be and I think being a visible presence helps, so that people, who may not ask for you, will actually have a chat when you’re passing. This way of being has led to several deep encounters with patients and their relatives.

This particular patient was unconscious so I couldn’t build a relationship with him. His Mum came over from Greece to be with her son. She spoke no English but took comfort from my visits. I would just stand with her beside the bed and I would put my arm around her and say a prayer. Her son did get better. When he woke up she wanted to go to a Greek Orthodox church and give thanks for his recovery. This was communicated to me via a sister who had arrived who spoke a little English. I was able to give them a list of churches and they went away very happy.

What struck me about that encounter was the importance of companionable silence and the power of touch as a communicator and healer. That mother was so grateful for my visits yet I did so little!

In at the deep end

I started work as a hospital chaplain in May 2005. My first impression was “Oh my God what have I done?” I felt I didn’t know anything or anyone. I felt useless. I couldn’t even find my way around the hospital.

I’m not sure how this changed or what brought about the change but my feelings did change and I soon found myself travelling the Emmaus road with many patients or relatives as well as the odd member of staff.

I have had many encounters but some of these encounters have been very significant and stick out for me in a different way. I’m sure all the encounters have been significant for the patients and relatives but there have been some that have touched me deeply. Part of writing this down is to try and work out why they touched me and what I have learned and taken away from these experiences.

I blessed my first dead baby in my first month of employment. The baby was still born to an 18 year old mother. What struck me about all of that was the care and attention given to the baby by the staff in the mortuary and the way the whole family loved and cherished this dead baby. The baby was wrapped in blankets while being held in order to ‘keep her warm’ Everyone had their photo taken with the baby including the other children in the family. It was very sad for the family but they were very open about the death. It wasn’t hidden as it so often is in English culture.

I was asked to take the funeral. It was the first time I’d ever had to take a baby or child’s funeral. I felt very humbled by the experience. It was really hard to write the funeral service because usually you can talk about the life that had been led and celebrate that life during the funeral service. This though, was a situation where there had been no life outside the womb. What was I going to say that would be helpful in that situation? Also how was I going to say it as the family had no faith or religion to speak of?

I felt the best thing to do was acknowledge those raw emotions, to honour those questions to which there are no easy answers. The family were very grateful and I felt privileged to have been through that experience with them and accompany them for a little while on their journey.