Sunday, 18 May 2014

Last post for death awareness week



On day on  my regular wanderings through ICU I met 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.

Another day and another of my regular visits to the ICU. This time 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 America. 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 borne 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 surroundings. 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 family’s 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.

Sometimes as a hospital chaplain when the bleep goes off you never know what you are being called to. In this respect it can be hard to prepare yourself. This day was no exception. I was bleeped by A&E resus to say they had a 63 year old woman who was on holiday in this country, and had a massive stroke while she was talking to her son. When I got to the bedside I found 2 distressed young men. They were both her sons. The family were Russian Orthodox and were a bit perplexed to be met with a woman priest. I sensed their unease and checked their religion. Once I found out I said I would go back to my office and try and get them an orthodox priest. The staff in resus were apologetic. I find that many staff do not understand the different varieties and flavours within the same faith. In the main it’s not a problem but I was relieved I had not been disturbed in the middle of the night for this one.

I’d been back in my office 10 minutes trying to find an orthodox priest, when the bleep went again. The nurse in A&E asked me to come quickly as the patient was deteriorating and would last much longer. The family in these circumstances wanted anybody. I ran back to resus and puffed my way breathlessly through a traditional last rites and anointing. Throughout the whole of this the anaesthetist bagged the woman so that the prayers were done while she was still “alive” As soon as I finished he stopped and all the staff stepped back and let the family have a private moment with their mother.

The family came out to me and were very grateful that I had come back so quickly. They told me that it meant a lot that a priest had been with their mum when she died.

I’m not sure what God would make of all of this. I bet s/he has a good laugh as we try to make sense of things in such a confusing world. I’m sure God is not fussed by the religion of the people or the flavour of the priest. It’s more important what we each carry in our hearts and minds as we live our lives.

A different day and a very different situation. This time I met a young mother of 4 children. She had gone into labour at 23 weeks with her 5th child. The baby had lived for 8 hours. What impressed me was the honesty of the encounter. The day I met the woman, she was raw with emotion. She had a friend with her and they were both visibly upset. I blessed the baby and spent time talking to them both. The woman didn’t have much faith in her partner but knew she could rely on her friends. I told her to contact me if she needed anything further.

The next I heard was from a funeral director, who asked me if I would take the baby’s funeral at the mum’s request. I said I would and so contacted the mum to arrange a time to visit her and plan the funeral.

When I arrived at the house all the other children were present, aged 13, 11, 9 and 2. There was also a friend present with a small child. It was the most interesting funeral visit I have ever done. The children were so naturally honest and inquisitive. I was asked questions like “How will the baby get to heaven if he’s body is burnt?” “Will the baby recognise us when we get to heaven?” “What is heaven really like?” The questions went on and on. In between answering these profound and theological questions I was talking to the mum about what she wanted included in the funeral. The whole family decided on what music and reading to have. When I suggested the children write a letter to their baby brother they seemed really pleased.

When I left the house I had a crowd of kids around me and my motorbike asking me questions like “Do I live in a church?” and “Could they have a ride on my bike?” I don’t usually leave funeral visits smiling but I did on that day.

When it came to the funeral all the children had written a letter to their brother and or drawn a picture. At the beginning of the service the mum broke down and started to weep. The oldest child went and got my colleague from the mortuary, who had also been working closely with the family, and brought him down to sit with her mum. I was touched by the daughter’s thoughtfulness. When it came to it she then read her letter beautifully. The younger children were overwhelmed by the event and gave me their letters to read out. If I’m normally reading a child’s words I read it through with them first just to make sure I get it right. In this instance I had no preparation. I think I managed to work out the spelling and grammar well enough, but it tested me. Afterwards the letters and drawings were put on the tiny coffin.

After the service, as we gathered around outside, my colleague beckoned me over. The children were asking him questions and he said he needed my help to answer. They wanted to know how all the dead people fitted into heaven and was there still enough room for everyone. The look that exchanged between me and my colleague said it all. He was mightily relived that I seemed more qualified to answer the question. The children seemed satisfied with my answer about not needing our bodies, so not taking up so much space.

I love kids and their directness. They often ask questions that adults would really like to know the answers to if only they were brave enough to ask.

Summer was in full swing when one of our regular patients with cystic fibrosis took a turn for the worse. He had reach 27 years old and was now dying. His mum worked in the hospital. The extended family gathered around him in the side room of our specialist CF ward. There were about 14 people who all took turns to be at his side. Most of them were unable to speak and felt useless at varying times.
The nurses were also greatly affected by what was going on. They nurse these young people over a number of years and it must be hard for them. I think specialist units like that should run regular supervision sessions for the staff because of the blurred boundaries that occur in these situations. Staff also need a place where they can safely express their own grief as they get to know these patients and their families in much greater depth than the ordinary run of the mill patients.

During those last few hours, the young man was able to say what he wanted to happen to some of his possessions and what music he wanted for his funeral. I was so impressed by the way he was facing his imminent death. His family coped with this but had to leave the room to weep when it got too much. I would just follow each of them out in turn and hold onto them, or stand beside them, until they felt able to carry on. When he stopped breathing, his dad started to shout my name. He wanted me to do something, but what could I do? I also felt useless. I reassured them that it was OK and that the young man was at peace now and no longer struggling with the things that were so difficult for him. I said a prayer and told them to all come and give him a kiss and give him a message to take with him as hearing is the last sense to go. It was all so poignant.

I felt the poignancy more so because the young woman that I had been supporting over the years was also there. I had to take special care of her because I was acutely aware that she was staring into her own future. Life is so tough sometimes.

I was in the privileged position of being able to take this young man’s funeral. It was a grand occasion with lots of laughter as well as tears. I felt it was a very fitting end to a young man who had lived the best life he could despite the awful hand he had been dealt.
The following situations all occurred in my last couple of weeks of working in the Trust. What makes these situations all the more poignant is that they happened over the Christmas period.

A young woman was referred to me from the Macmillan team. She had terminal cancer and was not fully accepting her diagnosis. She had told the palliative care team she was finding it hard to pray which is why they asked me to see her.

When I saw her she looked really frail and it was obvious she wasn’t going to live much longer. She told me that she had run out of words to say to God. I said that was ok, that the bible says that the spirit intercedes for us with sigh’s too deep for words. She seemed to take some comfort from this. I also read her Psalm 139 which says that God knows our words even before we say them. These conversations happened over a few days as it was only possible to have snippets of conversation before she was exhausted.

The one thing she was consistent about was her wish to go home. She was going back to her parents house as she wasn’t fit enough for her own home. One day she told me that she wasn’t going to be able to go back to work. I thought this was a breakthrough and began to open up the conversation about how she would prepare for her death. We seemed to be going in the same direction and then out of the blue she told me she was looking forward to her dad taking her out in the car for drives until she got better.

I knew I couldn’t lead her down a road that she wasn’t willing to travel. I also know that some people die in denial. All I could do was walk with her wherever she took me. I would often take her poems and readings and read them to her. She would always say thank you and appreciated me coming but we never went further than that.

She got home and died two days later.

These situations can lead to the professionals involved feeling dissatisfied. I think we all did a good enough job. It would have been wrong to push her when she wasn’t ready to face her imminent death. I think God would have helped her and did help her through that last process and that is something we can’t know about till our turn comes.

As I was passing through ICU one day I heard someone sobbing loudly from a visitor’s bedroom. I asked what that was about but the staff on ICU didn’t know anything and said it must be to do with HDU next door. Of course, being me, I couldn’t ignore it so went and checked with HDU. They told me a patient had just died and said it would be nice if I checked on the family. 

I went out into the corridor and turned the corner. I saw a woman I recognised as a visitor from my regular wanderings through the unit. She saw me and threw her arms around me and started to wail loudly. I had snot and tears running down my neck and people in the visitors room looking very uncomfortable at the commotion but I knew I needed to wait just long enough to be able to get the woman to take my hand and I lead her back into the more private surroundings of bedroom she'd been allocated just on the side of the unit. Her daughters were also there with their partners.

Unlike the other situation I’d dealt with that day, this man had been ill for some time and his death was not unexpected. They were all still extremely shocked that it had finally happened. This man was obviously well loved and even though they were glad he was no longer suffering they couldn’t imagine life without him. I spent a couple of hours with the family until they felt able to go. They asked me to say some prayers before they left, which I did. I emphasised that the thread which separates life and death, still bind us to those we love through the memories of the heart.

Sometimes that's all we can do is be there at that point where love and sorrow meet!

The 2nd woman I met in that particular week of amazing women was someone who knew she was dying. She was in her 50’s and had 3 different primary cancers. I have never known that in anyone else. Despite the really awful hand that had been dealt her, she was amazingly pragmatic and positive. She wanted to know from me if she could have a funeral service in church even though she was an atheist. The reason she wanted to be in church was because she was a professional singer and had sung in churches and cathedrals all her life, as had her long term partner.

As a hospital chaplain I am used to having unusual requests made of me. Parish clergy are slightly different because they generally meet the needs of a Christian community or those who nominally want a Christian service. I was hoping I’d be able to find a local vicar who’d be able to cope with this slightly unusual request.

One vicar I spoke to said he couldn’t carry out their request in all conscience, that there would have to be prayers and a Christian commendation. He also didn’t feel comfortable letting someone else take the service. I wasn’t deterred though and did find someone, who is the vicar of a lovely local church that has a high ceiling and would have good acoustics. I was really pleased to be able to go back to the family and say I’d found someone who could accommodate their wishes. During the couple of days that it took me to sort this out, I had several conversations with the family which included partner, daughter and mother. All were very open about what was happening. They asked me all sorts of very practical questions. The whole time they were doing this they were physically in contact with each other. I was incredibly impressed by them and gave the patient a copy of a poem and wrote a note on it to say she had my utmost respect for the way she was facing her death.

I went to say goodbye to them the day they left hospital. They were taking this wonderful woman home to die. They knew that I was shortly to leave the Trust and they said it was a shame because they were thinking about asking me to take the funeral. I thanked them for being so open with me about everything and wished them well as a family for what was to come. The patient was lying in bed looking frail. It nearly brought a lump to my throat when, with a huge effort she sat up and reached to the end of the bed where I was standing to give me a hug. That was one of the most precious hugs I’ve received and given. Aren’t there some amazing people in the world?

I was bleeped to deal with the tragic and unexpected death of a 6 year old. The child had come in the day before which was Boxing Day, the day after Christmas Day for international readers. The child had come in just generally unwell but was usually fit and healthy. The medics had observed her overnight as she had come up late to the ward and had then decided to do a lumbar puncture before lunch. Within half an hour of this procedure the child arrested (her heart stopped) and unfortunately the resuscitation attempt was unsuccessful.

The ward manager bleeped me. She was relieved to get me and explained what had happened. I said I’d be there as quickly as I could.

As it was nearly lunchtime I went back to the office to grab my oil and prayer book and I also quickly ate some fruit as I now know from experience that these things take time. When I arrived on the ward I was met by a frazzled deputy ward manager who told me they were behind in getting pain relief to the other children because of what had happened and so many nurses being tied up with it. She showed me to the room. I went in and the ward manager looked at me with eyes that were struggling to hold back the tears and immediately left me to it. Up till this point I had still not heard the story of what had been going on with the child so was going into the situation blindly. 

Mum was sitting in a chair one side of the bed, dad was pacing the other side. Their older daughter, who looked around 13 was stroking her sisters hair. They were all crying. Dad was saying he didn’t want to live. He was also pleading with God to take him instead and give his daughter back. Mum just looked at me with these huge disbelieving eyes and said “How can I leave her here. I promised I’d take her home to her Christmas presents and now you tell me that I can never take her home. You tell me how I am supposed to do that?” I took a deep breath in the face of such raw emotion and went and stood beside mum and placed my hand on her should and just said how so so sorry I was for her pain and I could not imagine how awful she must be feeling. She then grabbed onto me firmly and poured her heart out. Dad was still pleading with God and telling me he didn’t want to live. He also kept wailing. With my one free hand I reached out to their daughter who then snuggled under my arm and wept. I asked her if she had a friend or someone that she could ring who could be there for her. Her mum then said that was a good idea and encouraged her to ring her best friend. I was concerned for her and could not physically or emotionally effectively look after all 3 of them.

After about an hour of really intense emotion the dad reached out for my prayer book and placed it on the child. I asked the family if they wanted me to say some prayers. They said they did. I’m not sure what I prayed, as adrenaline takes over because your mind is screaming what on earth can you say in such an awful situation. Words just seem completely inadequate. I did anoint the little girl and got the family to participate in this ritual as I think action often communicates where words fail us. When this was finished the family seemed slightly more settled and were able to tell me what had happened.

Eventually other family members began to arrive. Also the friend for the older daughter arrived with her mum, which I thought was really good of them. Each time a new family member appeared the raw grief would come spurting out at force like a volcano erupting.

Another hour went by. The mum was still hanging on to me most of the time. She then told me she needed to phone her parents in Europe as they were meant to be travelling out to them the next day. I arranged for mum to use the phone in the ward office. She asked me to come with her. Even though I didn’t understand the words being used in the phone conversation because of the language barrier I could still clearly hear the pain and grief as it tumbled out.

We went back into the room. By now the child’s body was fairly cool and stiff. Blood was also trickling out of her nose. None of this seemed to be outwardly causing the family anymore distress than they were already feeling. All they would do is gently wipe her nose. I explained that this was all a natural part of the death process. They then started to ask me if they could take the child home. I then had the delicate job of explaining that this beautiful little girl would need to have a post mortem because of the unexpected way in which she had died. I explained that they would also want answers and this was the only way to get them. The uncle was distressed at this and asked to talk to me outside. He said he didn’t want this to happen as he had heard about doctors keeping children’s organs. I explained that the law had changed and that this couldn’t happen and I promised the family that anything that was looked at during the post-mortem process would be returned to the child’s body before she was buried or cremated. I then had to explain the legalities of the coroner’s office and that the child was now under their care until they felt it was ok to release her to an undertaker for the parents to make the arrangements.

It’s an awful lot for a family to take in and there is a booklet that explains all this for families to refer back to which I would give to them when they were ready to leave.

Another hour had gone by and I started to talk to the family about how they were going to say goodbye for now. Dad said he wanted some pictures so another family member started to take pictures of dad and mum and sisters.

I’ve noticed the taking of pictures is beginning to creep into these situations more often. This is mainly due to mobile technology and the fact that people often have a camera with them on their phone. I must admit it’s a new phenomenon that leaves me slightly uncomfortable but that’s my hang up.

After the pictures were taken I asked the extended family if they also wanted to anoint the child like the immediate family had done earlier then leave the family for a more private goodbye.

This seemed to work to enable people to leave the room until only myself and the parents and older daughter were left. I reassured them that they could come back to the mortuary anytime to be with their daughter and to arrange this through the ward as it was the weekend. They told me they’d be back the next day and asked if they could see me again. I reassured them I was around all over the weekend.

Every time I thought they had left the room for good one of them would go back in again. All I could do was be there with them until they felt able to leave their daughter for the last time in an ordinary ward. From now on they’d only see their precious little girl in the mortuary or an undertakers chapel.

I walked them to the end of the ward when they were finally ready to go. I can’t imagine how awful and gut wrenching that must feel. As I turned to walk back down the ward I sighed heavily and stretched out my tired stiff shoulders that had absorbed so much over the last few hours. I now needed to spend a bit of time with the staff who were still looking traumatised.

When I got home eventually that night it was like I had used up all my words. I found it quite difficult to talk to my family. It felt like I just needed a bit of space and solitude and nothing too demanding.

Refreshed by that space I went in the next morning. At some point I was contacted by the nurse in charge of the children’s ward who told me that the family would be arriving in half and hour and was I free to be with her and them in the mortuary. She then told me she was about to bleep the porters to get the child’s body out and ready. I told her not to bleep the porters and I would do it. I know the porters find dealing with children difficult. I also wanted to make sure the little girl looked as good as she possibly could for her family. I took her out of the fridge and placed her in the viewing room. I removed the gauze from her nose and gently washed her face. I brushed her hair and placed teddies around her.

Just as I was finishing off the family arrived. They greeted me like a long lost relative. Again there were lots of photos taken. The aunt asked to have a word with me outside and then asked if I could spend time with the mum because she was saying she wouldn’t have got through the previous day without me. She also asked if I could help with the funeral. I had to tell her that I only had one more day at work and then I was leaving. I felt awful as I usually like to travel with a family for as long as they need me. I knew I needed to draw a line but it felt horrible.

When the family left their little girl this time it felt different. They were already calmer. The only strange thing that happened was dad asked me if there was any way of preserving the body so that they could keep coming to see her. He said he’d seen something on the tele about people being frozen forever. I explained as best I could about cryogenics and why that wasn’t an option. He accepted this and took more pictures. He obviously wanted to preserve his daughter for as long as he could and was worried that he’d forget her or forget what she looked like. I guess I can understand this, even though I believe that death only separates us from the body but for me importantly the heart and mind of the living keep the memories.

The last 2 weeks that I worked as a hospital chaplain were pretty full on but reinforced to me how diverse hospital chaplaincy is. I was also reminded that even though the day might have been full of awful things and horrendous trauma’s, it is still possible to go home satisfied that you’ve done a good job. It may seem weird to say that you get job satisfaction in the face of such adversity but I know that these last two weeks and over near enough four years, I have in a small way made a difference to some people. I’m grateful that I’ve been blessed with a temperament that makes it possible for me to go where angels fear to tread. I know without a shadow of a doubt that all those patients, relatives and staff that have shared their stories with me over the last few years will continue to inform my future ministry and add to the rich tapestry that is my life. Thank you to each and everyone of you. This blog is dedicated to all those memories.

May the angels protect you
Trouble neglect you
And heaven accept you when it's time to go home
May you always have plenty
Your glass never empty
Know in your belly
You're never alone

May your tears come from laughing
You find friends worth having
With every year passing
They mean more than gold
May you win but stay humble
Smile more than grumble
And know when you stumble
You're never alone

Never alone
Never alone
I'll be in every beat of your heart
When you face the unknown
Wherever you fly
This isn't goodbye
My love will follow you stay with you
Baby you're never alone

Well, I have to be honest
As much as I want it
I'm not gonna promise the cold winds won't blow
So when hard times have found you
And your fear surround you
Wrap my love around you
You're never alone

Never alone
Never alone
I'll be in every beat of your heart
When you face the unknown
Wherever you fly
This isn't goodbye
My love will follow you stay with you
Baby you're never alone

May the angels protect you
Trouble neglect you
And heaven accept you when it's time to go home
And when hard times have found you
And your fear surround you
Wrap my love around you
You're never alone

Never alone
Never alone
I'll be in every beat of your heart
When you face the unknown
Wherever you fly
This isn't goodbye
My love will follow you stay with you
Baby you're never alone
My love will follow you stay with you
Baby you're never alone
Lady Antebellum

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