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.

Reaching out to those you don't meet

My senior colleague had now come back to work after the best part of a year. She would initially work on a part time basis. It was great to stop rushing around and doing everything and start to share the load again. Chaplaincy is such a charged environment to work in that I don’t think anyone should ever work on their own for long periods of time without extremely good reason and very frequent and effective supervision.

My mini thought for the week was beginning to capture people’s imagination. Several staff had heard about it and complained that they didn’t get to see it because they didn’t pass the notice board outside the chapel. I had discussed it with the manager who was managing me during my colleagues absence and she suggested something might be able to be done on the hospitals computer system. I then talked about it with IT and they had told me it could be done, and when they could, they’d drop by the office and show me how to put it on the intranet.

Several weeks passed and then the guy from IT suddenly had a free space and showed up one morning. This medium proved to be effective and the thoughts became quite popular receiving over 100 hits per week right from the start. I saw it as a way of reaching out to people who might not ask for a chaplain or who might not know about the work we could do. So attached to each thought there would also be a little snippet about the service. It was an easy way to raise awareness and promote the work we do. Unfortunately my senior colleague didn’t like this new development and the thoughts were stopped. I think that’s a great shame.

It can be difficult when colleagues come from different perspectives. As my colleague was senior to me I had to abide by her wishes. I guess her coming back was also to have its challenges.

A feisty imp and a Rebel Rev make a great pair

I'm back after a nice break.

As you read this please remember these posts were written a few years ago.

I like the variety in my job and that one minute I might be chatting to someone in their 80’s and the next I might be with a teenager. There is one particular teenager that I have been heavily involved with and have quite a close relationship with. She has cystic fibrosis and is in and out of hospital on a regular basis. It changes the nature of the relationship when you have an on-going relationship that extends beyond one admission. This young woman is also very good at pushing the boundaries. One boundary that she has pushed, and I have allowed to be crossed, is that she has my mobile number. She uses it to text me. Young people communicate in very different ways. She knows that she can only text me on working days and that I won’t respond on my days off. It doesn’t stop her trying her luck though. She texts me when she wants me to take her out for lunch or to the shopping centre or if she just wants a hug.

She has a turbulent background and I think the hospital has become an extension of her family. This means that the usual family dynamics can be played out on the ward. She can be feisty and this can lead to the staff being parental and punishing her. She then resents this and becomes even more awkward. It’s a very difficult situation all around. She has learned to manipulate people through being so ill. It’s a survival strategy. The staff end up resenting that they have been manipulated and then there is even more tension. It’s an extremely complex situation and I find myself treading the fine line between the staff and the patient.

I’m trying to work with this young woman to help her to live and live well until she dies. She sees the world as a battleground and everyone as a potential adversary. She has a typical teenage relationship with her mum and they often don’t talk. It’s very sad because if she becomes acutely unwell and dies while her mum is not talking to her, I know her mum will never forgive herself. It is also possible that the mum might become acutely unwell, as she was also really ill last year. If she died I think the young patient would be traumatised for the rest of her life. I don’t know how to get her to the point where she can see it’s better to do something to work through the difficulties of a situation, rather than potentially live with regrets.

It feels like this young woman is becoming dependent on me. Recently she was very upset over someone letting her down and not being there when he had said he would always be there. She told me that I would let her down one day too, that everybody eventually walks away from her. I gently told her that I had never promised to always be there for her. All I could promise was that I was here right now and while I could, I’d be there. It was a tough conversation. It would have been easier to say “I’ll always be there” She evokes that kind of response, but do I really mean that? I might change jobs or move away, the same as any other professional in her life. What’s important is that I don’t promise her anything I can’t keep. That’s how she has been hurt in the past. People make promises but then their circumstances change. I think ongoing work needs to be done with health care professionals about boundaries. It should become part of regular mandatory training to think about these things. Instead what happens is they only get discussed when there is a problem. I think it’s a bit late then.

I hope I can continue to keep my boundaries despite this young woman’s pushing. My fervent hope though is that I can help her to live what life she has left to the best of her ability and to celebrate that life rather than see everything as difficult. It’s tough going because she does have a more difficult life to lead. It’s like the quote says “Life is only 10% of what happens to you. The other 90% is how you respond to it” I will continue to try and be there and help her respond differently.

An Officer and a Gentleman and a Rebel Rev

There was another patient that I saw on a fairly regular basis, She was 83 and had had several strokes which left her totally dependent. Her husband had been her sole carer for a number of years. He is an ex-naval man and quite traditional in his view of the roles of men and women yet he gladly does everything for his wife. I first met him a couple of years ago. At that time he told me he would never cope if anything happened to his wife.

This admission was difficult because he was blaming himself for the fall that had resulted in a broken pelvis for his wife. He had momentarily taken his eye off her as he was transferring her from the car to her wheelchair when someone had said hello. They were on their way into church at the time. I kept trying to say that accidents happen but he wouldn’t have it. He was being really hard on himself. His anger then turned towards the woman who had said hello and at that point she became the enemy and he would call her names in his anger and frustration. At one point it even became my fault because I had found the church for him a year ago and if he hadn’t been taking his wife there then it wouldn’t have happened, although he never said this directly to me. Eventually his wife was discharged to a rehab centre until she was well enough to go home. With this turn of events he seemed to be much calmer.

I was really concerned over what would happen to this man when his wife did eventually die. In my chats with him I didn’t seem to get anywhere with him when I talked about the fact that we all must die some day. He would say to me that he would never forgive God if he takes his wife away. I tried to tell him that I didn’t believe God works like that, it’s just a fact of life that from the moment we are born the only certainty is that one day we will die. He won’t have any of it. I also talked to him about the length of his marriage and what a blessing that must have been over the years, but none of it seemed to make a difference. Yet he continued to seek me out whenever his wife was admitted and loves buying me a hot chocolate while we have a good chat. All I could do was continue to be there and listen until the fateful day came.

That day came this summer. The wife came in during the night. I was bleeped as things looked very bleak. When I arrived I spent some time with the man at his wife’s bedside. Then we went off for a hot chocolate. During this time his daughter arrived. I took the man back to the bedside and we said some prayers and got them both to anoint their loved one. The man was still hoping for a miracle. His daughter persuaded him to go home. They both came back early the next morning and were with this woman, that had suffered so much, as she peacefully slipped away.

The man was incredibly upset and yet also quite calm. I was wondering when he would fall apart. He came to see me several times to ask practical questions. My hardest job was persuading him that he couldn’t keep his wife with him at home until the funeral. I tried to do this delicately but two weeks in the heat of the summer would have created a big problem. In the end he settled on two nights.

The priest in the local church took the service and I attended even though it was my day off. This man had trusted me with so much over the years I thought it was right and proper that I should pay my respects. It was a lovely service. The vicar acknowledged the good work between the hospital and the parish in passing the couple on into their care. It’s great when things turn out well. I know this parish can now give the man much more support that I can as a busy full time chaplain. I haven’t seen him yet since the funeral. I will drop him a line and invite him to our annual memorial service. I hope he is ok. I suspect it may not have totally hit him yet.

In fact I need not have worried. this man found a new lease of life. He became a leading light in the church pantomime. Many activities that he hadn't been able to do because of being a full time carer he took to with relish. You can never tell how things will turn out.

I am now on holiday for a week. More posts when I get back

Old enough to die

One of the things I was keen to develop was a closer working relationship with the palliative care team. I went and spoke to them about my understanding of general spiritual care as opposed to religious ministrations and the cross over with some of what they did in helping people to die well.

Spiritual care can be described as a search for meaning, understanding and belonging. It’s asking questions like “Why me?” or “What will happen to me when I die?” or “What will happen to my family?” We all have a spirituality. Only some of us have a religion. Religion is a hook that some of us hang our spirituality on.

The palliative care team agreed there was a lot of cross over so it was decided to invite me to the weekly multi-disciplinary team meeting. From there I have become very much part of the extended team.

As part of those regular weekly meetings two elderly women were brought to my attention. One was 82 and the other 91. They were both dying and approached death in a very matter of fact way. The 82 year old had just been diagnosed with cancer and decided she didn’t want any further tests or treatment and just wanted to be left with as much dignity as possible for the time that she had.

The 91 year old was very frail physically but was emotionally very robust. She had a no nonsense approach to life and death. She had put her affairs in order and was really looking forward to meeting her maker. As a chaplain I deal with so many people who don’t want to die or don’t want to talk about the possibility of dying. It’s refreshing when I meet people who can be open about it.

The work of the palliative care team is quite extensive. It used to be only people with a diagnosis of cancer. Now they take referrals from anyone who is coming to the end of their lives. That could be things like heart failure or kidney failure as well as terminal cancer. I value being part of the team and having an opportunity on a regular basis to discuss any concerns.

Rebel Rev becomes a "lay" member of a committee

It'd been hard going in the hospital recently. I seemed to have been inundated with funerals for people who had died far too soon. I was sometimes being bleeped out 3 nights in a row and sometimes several tims in the same night. despite this I still had to work the next day.

Around this time there was a general email that went out asking for people to respond who were interested in becoming members of the ethics committee. Ethics and theology have been linked through the centuries and I had to do an ethics module as part of my ordination training. I went along to get some info and decided to apply. I thought it’d be a great way of keeping up with current trends in the NHS. The co-ordinator also said that it was a role I could share with my senior colleague. I said I would mention it to her when she got back to work.

I was pleased that I was getting involved in some of the regular things that happen around the hospital. I think it’s important for chaplains to be an integral part of the institution. The old model of chaplaincy is where the chaplains sits slightly outside the institution and just comes in at moments of crisis. Modern day chaplaincy is about being an allied health care professional and part of the very fabric of the regular patterns of work.

Chaplaincy has always been difficult to evaluate in terms of measurable outputs. Therefore it is hard to prove the effectiveness of a chaplaincy service, being involved in other teams and disciplines shows the versatility that chaplains have and how effective they can be when they embrace the institution and the institution embraces them.

I loved being part of the ethics committee and it always made me smile to be referred to as a "lay" member!

You cannot lose what you hold in the heart

As summer came there were a few distressing things that happened and all became connected for me. A member of staff who I had begun to get to know was faced with the tragic situation of her husband being killed in an accident while he cycled home. One of her colleagues emailed me to tell me the news. I immediately wrote to her at home to express my sorrow at her situation. I received an email back asking me if I did home visits. Staff are as much part of the work of a chaplaincy department as patients and their relatives and visitors, so of course I would do a home visit in this particular situation. 

I went to see her and her two grown up daughters. They were all numb with shock. They spoke to me about their dad/husband, in the main devoid of emotion, because of the enormity and unexpectedness of what had happened. The member of staff knew I valued spiritual care and not just religion. She asked me if it was possible for me to take her husband’s funeral in a non-religious way. She explained that her husband was a staunch member of the Liberal Democrat Party and was a real thinker but was not religious. I said I would be able to carry out their wishes because a hospital chaplain is there for people of all faiths as well as those of no particular faith.

There was a slight delay in the funeral due to the circumstances of the death. This gave me time to think about how I was going to construct the service without the religious framework. I was gathering ideas but was feeling the tension of wanting to make the occasion a meaningful encounter for everyone and not water everything down so that in the end nothing of substance is being said.

While I was pondering all this, another funeral came in for the day after this one. It was again a death out of season where the woman had lost her battle to cancer at the age of 53. I did the funeral visit and got the families story but decided not to write it up until I had got the man’s funeral done. I didn’t want to get them confused in my head.

I had been working on the man’s funeral for about a week. It was the night before the funeral and I was sitting at my desk working on it and trying to pull it all together, I actually got up and paced a few times. I really wanted to do a good job but this was all new to me. I had never created a service like this before. One of the novel things that was to happen in the service was that the mourners were going to be given an opportunity to place a message on the coffin that had been written on a post it note during the service. The family were very keen for this to happen but wanted to make sure it was dignified. There was also going to be poems and tributes by former colleagues and Liberal Democrat members. I didn’t know how long these would last. I had given a time frame but people sometimes are not aware of how long it takes to speak the words that have been written. I had to somehow hold all this together and try and create something of meaning.

While I was sat at the computer I had a call from the hospital. A child had suddenly died in A&E. The family went to a local church and wanted their own priest to attend. Unfortunately the hospital couldn’t contact this person so they had asked for the chaplain instead.

When I arrived there was a large family gathering around the young distraught parents. The child was 21 months old. She had been in the department all day and had suddenly died. The family were swinging between anger at the hospital for not saving their daughter and complete disbelief. I stayed in the room with them and as more family arrived the emotional out pouring would start all over again. The family asked me to bless the child. I got everyone to gather around. It was a really hot day and we were in a small room in the children’s A&E department. The air was extremely sticky. I anointed and everyone else also took their turn in anointing. Whilst I gave the child a blessing the family held hands in a circle around her. Then one of the grandmothers asked if we could sing something. I said sure. She started to sing but nobody new what she was singing and couldn’t join in. She then said what else could be sung that everyone could join in with. There was a silence and then I suggested Amazing Grace. We all started to sing Amazing Grace. It was a beautiful moment. During the second verse people stopped singing. I guess they didn’t know the words or they might have been overcome with emotion. I was left singing on my own. I felt very exposed but thought it best to carry on. At the end of the 2^nd verse I went back to the 1^st verse and they all joined in again.

It was a moving and meaningful goodbye ritual for this little girl. What I needed to do was now create a situation where the parents could have some time alone with their daughter. I suggested this and everyone left the room. They asked me to stay with them and to say some more prayers. I did this. At one point I called the child by the name of another dead child that I had dealt with a few days before. I corrected myself straight away but felt awful and immediately felt my muscles flinch at my mistake.

The parents were on either side of the child’s body. Dad was telling her a goodnight story mum was in a crumpled heap on the floor. I sat on the floor with mum but she was quite distant. Occasionally she would grab my hand. I felt so helpless. In the end because the situation had gone on so long and I wanted to try and gently move them along, I said I would go outside while they said goodbye and goodnight to their daughter. Whilst outside I spent some time comforting the extended family. Eventually the parents came out and the family surrounded them and took them away to begin the enormous task of coming to terms with their daughter’s death.

I then spent some time with staff, who were also shocked and traumatised by what had happened. It was an unexpected and unexplained death. This would mean a hospital investigation as well as a coroner’s post mortem. I chatted with the nurses and then went to the doctor’s room. I encouraged them to go home and have a bath and a hot chocolate or glass of wine. I explained that it could all be looked at again the next day. They took my advice and I gave them a hug as they left.

I eventually got home at 1am and had to finish the funeral I had been working on when I got the call.

I crawled into bed around 3am. I was up again at 7am as I had the usual weekly baby funerals that morning. I did that and came into work and went to see how the staff were doing after last nights events. I then went to the office and took some time to just be with my thoughts and have some lunch.

When I arrived to take the funeral that I had been so worried about the crematorium staff commented that I looked different not being in uniform. I wore a dark suit with a yellow shirt to honour the man’s political leanings. It was strange because not wearing the robes left me feeling slightly vulnerable. It wasn’t drastic but I was aware of it.

The funeral went really well. The family were relieved that it was over and pleased that it had proved to be such a fitting occasion for such a well respected man. They were insistent that I come back to the house. I said I would call by later but I had to go back to the hospital first.

I went back to the hospital and saw a few patients and then had to write up the funeral service for the woman who had died from cancer. This was more straightforward but I was glad I now had the space in my head to think only of this service.

I called into the man’s family on my way home and had a drink with them and arrived home around 7pm. I was totally exhausted. I knew I was pushing myself too hard and that I needed to have a break. Although I had lots of support around me during my colleagues long-term absence, there was still an awful lot that could only be done by me as the full time chaplain. If I ended up off sick, that wouldn’t do anyone any good.

The next day, after the funeral, I came back to the office to discover an email from a friend telling me that a space had unexpectedly come up on a week’s retreat on Iona. It felt like a sign from God. I went and spoke to the senior manager who was managing me in my colleague’s absence and she agreed that I could have the leave as recognition for the extra responsibilities and work that I had been doing while we were short staffed.

I managed to get cover and had a wonderful 6 days on the beautiful Island of Iona. I came back refreshed both physically and spiritually and ready to continue with the demands of chaplaincy.