The privilege of catching little plops of love

Another family I picked up through my regular wanderings on ICU were with a man who was told he would die 25 years ago. Back then he’d had a massive heart attack and as a result some of his bowel was deprived of oxygen and died. The man ended up with most of his bowel being removed. His wife was determined that he would get better and used to crush up small spoonfuls of biscuit to get something in to him. Much to the doctors amazement he pulled through. He then managed to live cheerfully with chronic diarrhoea for the next 25 years. However, this admission was different and he was not to pull through. The family were distraught because he had always been such a fighter. I was privileged to be asked to take his funeral. It was the first time that someone said to me they wanted a fairly traditional service but they didn’t want the words ashes to ashes, dust to dust.

I remember that day being really bitterly cold. I was shivering as I stood at the graveside. When it came to lowering the coffin, the man’s wife walked away. She just couldn’t face it and didn’t want to see it go in the ground. She wanted to come back once it was all covered up.

A few months after her husband died the woman’s elderly mother also died. This opened up her husband’s bereavement all over again. We sometimes complain about how life is hard but I am constantly humbled by the life experiences that people have and choose to share with me. I was also asked to take the mother’s funeral. It’s hard when the only times you see people are at the sad events in their lives. I often bump into people who burst into tears because I remind them of some bereavement or another. I don’t take it personally and just give them a hug until the little plops of love that are falling for their loved ones dry up.

A cultural divide that needed bridging

One day as I made one of my regular visits to the ICU I was told of the very sad situation of a 38 year old woman who collapsed in the street. Her breathing and heart stopped during the collapse. The paramedics managed to resuscitate her but once in hospital they realised that she had massive brain damage and was unlikely to survive. She was not married and her parents were on their way from abroad. Once the parents arrived I met with them on several occasions. They were obviously distraught and I spent lots of time just listening to the mum sob. It was an awful situation for everyone.

The young woman was moved from ICU to a ward and everyone knew it was only a matter of time. The palliative care team had become involved and had written up medication to help with the fitting that was occurring as well as the usual end of life medications.

The young woman’s dad was a very contained man and didn’t say much. The mum opened up to me more. They were always very polite and appreciative of my visits to them and their daughter.

The young woman died in the early hours one day. I became aware of this when I bumped into one of my palliative care colleagues in the hall. She told me that the parents had been unhappy the last day about medication and it seems there was a problem with the ward not necessarily following the instructions given by the palliative care team. I am well aware of the difficulties that can arise due to communication not being carried out effectively and kind of inwardly sighed at this added difficulty. I said I would ring the parents the next day to give them a bit of space from the awful immediacy of their daughter’s death.

Much later that day after most people had gone home my palliative care colleague phoned me. She said “Thank God you are still there” She sounded really shaken up. The woman’s mother had phoned her and screamed and shouted and sworn at her almost hysterically for half and hour. It seems she was holding my colleague responsible for her daughter not having a peaceful death. The mother would not accept from my colleague that she had written up all the medication that her daughter might possibly need and that there was nothing further that could have been done.

I really felt for my colleague. It is extremely hard to have all that raw emotion aimed and thrown at you and still keep a professional view of the situation. My colleague had started to doubt herself. I was able to reassure her that she had done everything possible. We then talked about this being an extreme grief reaction and then did a debrief. I told my colleague that I would ring the family and do any follow up needed. She warned me not to ring that night. I told her not to worry and to go home and have a nice glass of wine and that I would ring her and the family the next morning.

When I spoke to the family they were obviously distressed but were calm and coherent. It seems my colleague had born the brunt of it and they were now able to be rational again. I offered the family on-going support and said that if they needed any advice to let me know. I was acutely aware that they were not in their own culture or familiar surrounding. I also know the death is a bureaucratic nightmare. I encouraged them to ring me at anytime and said I would also ring them from time to time.

I didn’t hear from them for a few days and by the time I got to ring about a week had gone by. They told me they had arranged their daughter’s funeral for the next day and said I was welcome to come if I wanted. I asked them who was taking the service for them. They said no-one that they had just invited all her friends and hoped they would all say a few words. My stomached flipped as they said this. British funerals just don’t work that way. I said I would come to the funeral and that I’d see them in the morning. I then desperately searched for a few meaningful poems before I had to dash from the office for a meeting.

The next morning the woman’s friends gathered at the crematorium. The parents said a few words about their daughter at the beginning and thanked everyone for coming. Her dad then told us about the kind of child this young woman had been and how proud he was of his daughter’s achievements. He then said if anyone else wanted to say anything he’d like to hear from them. There was an uncomfortable silence. I got up and explained who I was. I read a poem and then said that we weren’t used to getting up and talking at a funeral but it’s good to have the opportunity to say a few words about the person who had died and what they meant to us and share memories. I sat down then a man got up and spoke about his debates with the young woman and how they always laughed together. He sat down and then there was the uncomfortable silence again. Eventually the dad got up and said he didn’t know what else he could say but that his daughter was the best person she could be. He started to choke on his tears so I went and stood beside him. He gratefully glanced at me and went and sat down. I read another poem and said people might like to share their thoughts with those around them. Again there was an uncomfortable silence. This time the mum got up and thanked everyone for coming and asked me if I would say a prayer and finish the service.

I normally think about what I am going to say for a week at a funeral. I take longer to prepare for funerals than for sermons because I think it is so important to give someone a good send off. Here I was, standing in front of everyone, with no notes and only a few moments notice of having to say something. I think what I eventually said was appreciated and I was fortunate to be able to recall words that I have used in similar circumstances but I didn’t like it and the experience left me exhausted.

The family came to see me a few days later. They left me a card which had these words inside; “We’d like to thank you for all of your help and support – it was a real comfort to us. While we thought we could ‘go it alone’ your presence at our daughter’s funeral aided us so much in getting through a most difficult time. We wish you a happy and fulfilling future. We’re sure that your compassion and understanding will continue to help many people. We hope that you derive much personal fulfilment and satisfaction for all do for others. You are a truly special and compassionate person.

The enclosed is for you to do with as you wish – charities, etc. it is a very small token of our appreciation”

Inside the card was £100. Sometimes it is impossible to gauge the impact of an interaction and what different people take away from these tragic situations. I will treasure this families comments and feedback. The money I gave to our chaplaincy fund from which we do an annual memorial service for all those who have died in the hospital. I wrote to the family and thanked them and said I would remember their daughter at the memorial service even though by then they would have returned to their home country.

The things they don't tell you in ordination training

An important role of a hospital chaplain is to take Holy Communion to patient’s who would normally either go to church and receive communion or have communion brought to them at home by their local church.

The service used in most churches now is in modern language. At the hospital we have books with a shortened version of this service in fairly large print so that it is easy to use at a patients bedside. These books are given to the patient so that there is no trouble with infection control.

Before I was ordained and came to work at this Hospital, I did some voluntary work at another local hospital. I had been helping the chaplain there with his communion round and he felt I could go off and do a bedside communion on my own. It was to be fairly straightforward with a young woman who regularly attended church and was used to being in hospital with a long-term condition. When I arrived at her bedside she explained that the elderly patient next to her wanted to receive communion too. I said this wasn’t a problem and that I had enough with me. We all moved over to the elderly woman’s bedside and were having a lovely service. The problem came when I gave the elderly woman the wafer. She started to choke on it. I cupped my hands under her mouth and she coughed the wafer into my hands along with her false teeth! I couldn’t believe this was happening to me the first time I was let loose on my own in the hospital. I rinsed the woman’s teeth and gave them back to her but didn’t know what to do with the wafer. 

Once consecrated, wafer’s are meant to be consumed. There was no way I was going to eat this masticated blob. I carefully wrapped it up in a tissue, finished the service and made my way back to the chaplain’s office. When I got there I gave the chaplain the tissue and said “I don’t care about the rules, I’m not eating it!” I explained what had happened and the chaplain really laughed and said it should be written up in a trainee’s handbook. He said not to worry and he would burn it. In fact he did burn it and placed it with the ashes of the palm cross used to anoint people on Ash Weds. Truly incarnational theology!

Getting back to the present day, I have come to really appreciate the time I have with patients when they receive communion. I have become adept at creating sacred space in the midst of the noise and smells of busy hospital wards. What I always find moving is being alongside a confused elderly patient. When this is the case I often use the traditional words service. I find time and time again that the familiar rhythm of the words and prayers stirs a memory held dear by these patients and they find themselves joining in with the old words. They are sometimes word perfect and do all the right things in the right places as they receive communion. Afterwards they go back to their imaginary cleaning or conversations with people who aren’t there.

There was one patient who used to cry the whole time her husband wasn’t with her. The poor husband was exhausted by trying to be with his wife as much as possible. The patient hadn’t been much of a churchgoer recently but I found out she liked to sing. When I visited her the only way I could get her to be calm was to just sit with her and sing the old hymns. She would always join in. As soon as I stopped singing she would start to cry out for her husband again but if I started singing she would join in once more.

In my time as a hospital chaplain I have learned the importance of communication and that most of the time this is done without words in the order of a conversation.

The hidden lives most don't know about

My work with the palliative care team was proving to be fruitful in many different ways. 

One of the patients we had been discussing in the multi-disciplinary meeting was being cared for by the community team. She was a cause for concern. She had extensive disease including bone metastases and was staying with a friend who lived in a bedsit. She was sleeping on the floor. She had no income and wasn’t well enough to prove that she was entitled to benefits as she hadn’t been back in the country long enough to pass the Habitual Residency Test. I am familiar with these regulations because of my previous work as the manager of a Women’s Centre. The community team were floundering a bit and didn’t know what to do. I was able to give them a few pointers.

I also spoke to my congregation anonymously about this woman and asked for donations of food and toiletries. They were very generous and I was able to give the community team several bags of shopping. The woman was moved to tears when she received these gifts and wrote me a heartfelt thank you, which I read out to the congregation. She was also very grateful for the prayer that she felt was supporting her. She said that when she felt better she hoped to come to the church and say thank you herself.

This woman wanted a miracle and she put up a valiant fight but unfortunately she died after a brief hospital admission. Her body was taken to our hospital mortuary while her family were contacted abroad. Nearly a year later her body is still in the freezer. It has taken time for the family to be granted visa’s. They now have the paperwork but not enough money yet for the funeral.

Most of us have no idea how many bodies are held in freezers while officials try and find out who they are or track down relatives. It’s a sad situation. I know her soul is already at peace. I hope it won’t be long before her body can also be laid to rest.

                                        

Two paths converge

As well as my work at the hospital I enjoyed ministering to the people of the parish where I had been a curate since 2003. I was serving my title there as the Church of England puts it quaintly. The Church Warden had recently been ill. She lived alone in a flat. I went to visit her and realised she was more ill than had been understood. I started to liaise for her with her hospital appointments, which were all at the hospital where I worked. I used to meet her and accompany her to her outpatient clinics. Eventually she was admitted to the hospital. Her family all lived abroad so I was put down as Sheila’s next of kin. I contacted her family in Canada and America and kept then informed about what was going on. Her younger sister, who she got on with best, came over and Sheila was able to be at home and she picked up and didn’t seem so bad. Within weeks of her sister returning to Canada she had deteriorated to such an extent that she ended up back in hospital again. I visited her as much as I could and could see she was really struggling. This woman who had been a really active member of the church and used to go to the local school to help the children with their reading was now unable to walk or get in and out of bed without assistance. In fact she used to stay in the chair because she was frightened of not getting out of bed in enough time to go to the loo. She was being really stubborn about this and I could not budge her out of the chair into a more comfortable position in the bed.

It seemed that she was getting worse and she didn’t know why. She told me she had been referred to the palliative care team and she asked me what this was and why she had been referred. I was shocked because of course I knew what this meant. I needed to buy some time and said I’d talk to the doctors.

When I talked to the team of doctors looking after Sheila they told me she had cancer and that it was terminal. I asked them if they had told her. I wasn’t convinced by their answer that they had, even though they said they had. I explained to them that whatever they had said Sheila was unaware of the seriousness of the situation. I got as many facts as I could from them I went back into Sheila’s room with a heavy heart. She looked at me with questioning yet fearful eyes. She asked if I’d seen the doctor. I explained that I had and did she want to know what they had said. She told me she did. I took her hand in mine and as gently as I could I told her that she had cancer and that she was terminally ill. She asked me how long and I had to tell her it was likely to be weeks rather than months. I apologised for having to tell her this and she squeezed my hand and said “I’m glad it’s you that is telling me I wouldn’t want to hear this without you anyway.” Sheila looked shocked and sad. I just held her hand. She was a little tearful. I asked her if she was frightened and she astounded me by saying no. This woman was one of the worst worriers I knew so to hear she wasn’t frightened amazed me. It turned out that she wasn’t frightened because she had her faith and was looking forward to seeing her beloved daughter who had died at the age of 18. Now that she had the facts she seemed to stop fretting. Looking back on it now I think Sheila was afraid of losing her independence and living a life where she was unwell and felt ill. She now knew this was not going to be the case and so she relaxed. It’s strange how people deal with things so differently.

Sheila asked me to phone and tell her sisters. It’s hard to give bad news at anytime but to do it over the phone is horrible. I spoke to her youngest sister who said she would phone the others. From that point on there was a flurry of phone calls between us with me relaying information so that they could make decisions about when would be best to come over.

All through this time I saw Sheila several times a day. She hadn’t written a will, her sisters were anxious about this, as was Sheila. So for the first time in my life I wrote a very simple will out which Sheila signed in the presence of two friends from church, who witnessed it. I found myself wearing many different hats. I spoke to Sheila about what she wanted from her funeral and liaised closely with my colleague from the parish about all that was going on.

When Sheila first became ill she was aware that I was planning a big holiday to Australia. The time was slipping by and the time for my trip was getting closer. By now all Sheila’s family were over and trying to sort out her affairs, as she wasn’t expected to live for much longer. But she was still hanging on. I spoke to my parish colleague about it and we decided I needed to remind her that I was going away. That way if she wanted to give up sooner she could, not that these things are always controllable. About 3 weeks before I went and with my parish colleague at my side I told Sheila that I was due to fly off soon. You could see that she almost visibly shuddered but I explained that my colleague would be around and we would both take the best care for her while we could.

Sheila didn’t die before I left. I said some prayers with my colleague at her bedside 2 days before I left. It was like I was handing her over to my colleagues care and we were all aware that was what was going on. I saw her again on my own the day before I left. It was hard to say goodbye. I knew I was never going to see this woman again in this earthly life. We had become quite close during the last few months. I hated not being able to be there at the end and also knew that I probably wouldn’t be at her funeral either. It was definitely a tough goodbye. I went into the Chapel before I left work and handed her over into God’s tender care.

Whilst I was away I set up a special email address just for my colleague. Sheila died about a week after I left. I was pleased that this woman who had worried all her life, died peacefully and unafraid.  I expressed my feelings to my colleague and passed on my condolences to the family and to Sheila’s church family. On the day of Sheila’s funeral I went into a local church and said some prayers and lit a candle. My colleague very kindly quoted something I had said about Sheila as the final tribute in her eulogy. So even though separated by 11.000 miles I still felt connected.

The whole episode was very intense. I learned a lot about the importance of keeping boundaries when two areas of my life converged i.e. the curacy and the chaplaincy. I also learned that it is ok not to be able to see things through to completion. That although this leaves me not feeling as fulfilled it doesn’t mean the situation is less complete. The other people in Sheila’s life played their important roles and I did my Emmaus bit. In other words I journeyed with her for a while and she finished the journey on her own but also with the company of others.

A difference in perceptions

One day I was called by the mortuary staff. This was unusual. I liaised with the mortuary staff over our regular baby funerals but I didn't often get called out by them.

What had happened was a young man aged 24 had died suddenly and unexpectedly. Many of the young mans family had gathered at the mortuary and they were very distressed. I sat with them for about an hour as the grief poured out of them. 

Eventually it became clear that they wanted me to do something formal. I asked them if they wanted to come over to the chapel, which they did. I made up a short ceremony for them and got them all to light a candle for the young man. Then I also lit a separate candle for the man’s 2 year old son and said a prayer for him. At this point the chapel was so still and quiet you could’ve heard a pin drop. I played a piece of music and then left them sitting quietly. It was like no-one wanted to move. They stayed perfectly still for about 20 minutes while I just stood at the back praying silently for them all. 

Eventually they left one by one shaking my hand on the way out. I must admit I felt pretty useless. It’s hard standing in the face of such raw emotion. I went home feeling pretty tired and wrung out.

I saw the family a month later when they came to the annual memorial service. They greeted me like a long lost friend and gave me big hugs. They said I had really made a difference to them that day and thanked me profusely. 

It made me realise yet again that we can never know what helps and what doesn’t because it will always be different for each family. It is ok also to feel useless but it is just possible that the family are not perceiving it that way.