Hallucinations

Vicki HumeMany patients suffer hallucination while in ICU, some pleasant, some not so. While working for Royal Brompton and Guys Hospitals Arts Coordinator, Victoria Hume, supported by the Network, captured these experiences and put them to music.

Victoria Hume - Singer Song Writer

Approaching Delirium was a complicated experience. The things that made it appealing were the same things that made it incredibly hard to start: I wasn’t entirely sure how it would work, practically; I knew it would be complicated, and would involve time and focus; and I knew it would force me to look at fundamental, difficult things about life and death. And on a simple level – knowing how important the subject was – I didn’t want to do it badly.

In 2009 I finished working on a project called Transplant; it was a collaboration between photographer Tim Wainwright and sound artist John Wynne – an exhibition, book and DVD based on an 18-month residency in Harefield Hospital. Amongst other things, in my own role as arts manager at the hospital I had helped the artists with some of their interviews. I was profoundly struck by people’s experiences of intensive care – in particular their hallucinations. Not just by the content, of which more later, but by the fact that the hallucinations – in a situation where people were incredibly unwell, dealing with pain of all kinds – were the thing that people most remembered and were most disturbed by. I was haunted by the voice of
one of the interviewees, normally a very voluble, chatty, open person, saying
‘ITU …is a place best forgotten’.

I registered the subject as something I wanted to return to some day. In the meantime I carried on with my double-life, as a songwriter on evenings and weekends and an arts manager for the NHS during the week, until three years later the idea became an opportunity to bring the two halves of my life together.

Having received some funding from the PRS for Music Foundation through a scheme called Women Make Music (designed to right the balance between male and female composers), I wrote to the Intensive Care Society and was fortunately put on to Matt Wiltshire – who introduced me to the Reading ICU Support Group late in 2012.

In the meantime I had been developing a blog, trying to understand both the clinical perspective on hallucinations and the place they have held in various cultures. I was especially struck on a visit to South Africa by a video about San tribespeople, and the dance-induced hallucinations of the sangoma (traditional healer) – which act as a kind of safety valve for the rest of the community: crudely put, the sangoma regularly and ritualistically undertakes dangerous (hallucinatory) journeys between this world and the next for the health of his community and individuals within it. This is not an uncommon idea – mystics from Joan of Arc to William Blake could be said to have performed similar social functions. Hallucinations have at various times and in various places indicated power and insight – what Oliver Sacks calls a ‘privileged state of consciousness’ – in those who experience them.

Now, in the uber-rational west, we have no easy cultural architecture within which to hold hallucinations. But based on the stories I have heard, I have no doubt that intensive care, too, induces insight into the most central questions of life, whether we would want it or not. Many stories and images also reflect a sangoma-like limbo between life and death; some seem to mirror ancient myths (underground rivers like the Styx), some are simpler symbols (coffins, cliff-edges), some conflate the dead and the living (nurses walking around as skeletons).

‘Insight’ is a pertinent term, containing the notion of looking into something else, but also into oneself. This seems to me to characterise many ITU hallucinations –a collage of external images, some real and some imagined, which represent what is happening inside.

One of the most striking images of all the interviews was that of the projector. I came back to this idea repeatedly. I can hear Matt’s voice now, saying ‘I was the one that was controlling the film’. He wasn’t sure whether he was the projector or the projectionist. But either way I wonder whether this is central to delirious hallucination. Our experience is the film; our systems of understanding are the projector; what results is the images on the screen – the hallucination. Or more broadly, how we see the world.

Thanks to the generosity of the ICU group, as well as others outside it, I began speaking to people in the miserable weather of early 2013. As I transcribed the interviews, things began to fall into obvious groups. There were clear echoes between one experience and another – themes which manifested themselves in different ways. These themes ultimately formed the basis for Delirium’s songs. Amongst these were losing one’s voice; losing control; the experience of time as a kind of eternity; being attacked or persecuted by people; and the sheer power of the hallucinations, the way they live as memories of reality rather memories of dreams: two defining characteristics seem to be clarity of recall and the (perhaps resulting) confusion between objective, visible ‘reality’ and personal experience: ‘Still today I don’t know whether some things actually happened or whether it was my delirium.’ ‘They’re clear as day. …I couldn't tell you about what I’ve dreamt in the last month but I could draw you a picture of what that experience was like being in hospital’. ‘What the patient is experiencing – that is their reality, even though objectively looking in it isn’t, it actually is’.

Some songs, like Dreams or Control, clearly reference these themes – while some approach them through the story of one person’s hallucination: Cortege, for example, focuses on one person’s images, all of which seem to speak of hubris, the futility of ambition and human vanity. Fairies, on the other hand, is about healing ‘guardians’ of a sort – creatures who looked after the subject of the song when his family was unable to visit. Some perhaps leave more space for the listener to come to their own conclusions. And some I hope hint at the vitality, strength and humour of the people who have been through this experience.

Delirium was first performed in London’s Old Operating Theatre in June 2013 with two brilliant musical collaborators – Quinta (playing musical saw and viola) and Christopher Reed (guitar, percussion). I was thrilled that many of the participants could come, and even more that they liked the work and felt it reflected something of their experience. Since then we have performed it at Green Man Festival, at Death Talking to Delirium, Manchester Metropolitan University, and at the International Conference of Culture Health & Wellbeing in Bristol. I was delighted that on 31st October 2013 we will performed again at the Vortex in Dalston (east London), and on 29th November we took it to the Trainees and New Consultants Liaison Psychiatry Annual Conference in London, with a discussion panel.

The process of making the work, and its ongoing life, has shifted many things for me, both musically and – without wanting to sound too pretentious – philosophically. Some basic assumptions have been challenged and have resolved themselves into a new form… But the same questions remain about how we care for people, what we consider to be wellness, and how – alongside the amazing work of the ICU follow-up team at Royal Berkshire and many other clinicians – we might challenge the still-pervasive model of treating the body like a machine. As Melanie says in her interview, ‘you can sedate the body, but you can’t sedate the soul.’

You can read about Delirium and hear extracts on www.victoriajhume.wordpress.com. The album was related in November 2013 and can also be purchased through on victoriahume.bandcamp.com

Please feel free to comment on the blog, I would welcome your thoughts and responses.

Victoria

You will find the link to ICU's leaflet on Hallucinations on the General Information page.


Anxiety and/or Depression

After being discharged from ICU many patients suffer anxiety as it is a normal response to danger or stress. Dr Collette Selmer, Consultant Clinical Psychologist, presentation to a Network meeting provides as useful insight into ways of dealing with this condition should it arise. Coping with Anxiety and/or Depression



Trauma and Post Traumatic Stress Disorder

Dr Matthew Whalley of the Berkshire Traumatic Stress Service presentation to the Network explained what trauma is, how people feel during trauma, what they think after trauma and the treatment for the disorder.Presentation on Trauma and PTSD


Patients and staff as co-designers of Healthcare Services

Glenn Robert and colleagues describe an approach that aims to ensure that healthcare organisations realise the full potential of patients—the biggest resource they have for improving the quality of care.

Read their article


Communication Aids

Grid PlayerGrid Player is an Alternative and Augmentative Communication (AAC) App that helps people who cannot speak or who have unclear speech to communicate. Sentences that you create are spoken out loud.

Currently only available for iPad and iPhones, it can be downloaded from your App store at no cost.

One iPad is currently available on the Unit and has been found to be extremely beneficial to both the patient and their relative/carer.


HealthTalk

Find more information on a range of illnesses and other health-related issues from seeing and hearing people's real life experiences of intensive care. They can be found on HealthTalk.

Visit HealthTalk.org


Vicky's Picture

Patients are encouraged to express their memories of ICU through talking, writing or artwork. After her stay in the Unit and by way of a thank you Fine Arts student Vicki Lawrence produced this picture; it highlights eyes, hair and tubing which formed part of the hallucinations she experienced.

In the back ground you can see the words THANK YOU.

'Lady Resilience and her sidekick Frank' - Vicki has also written to book to help her and others move forward; she says

"There are many ways to deal with traumatic situations. As an artist I chose to illustrate mine. In 2008 I was diagnosed with Tuberculosis and subsequently in hospital for 11 months. The first 3 months I was unconscious, where the wonderful doctors and nurses of the Royal Berkshire ICU ward worked hard to save my life. For the remainder of the time I was recovering and it was during this time that I came up with the concept of 'Lady Resilience and her sidekick Frank'. I had put this concept aside until 2013 when I was in my final year of studying Fine Art at Southampton Solent University. I felt that it would not only serve as a perfect ending to my year, but also as a means of dealing with a difficult time in my life. The first volume of 'Lady Resilience and her sidekick Frank' is a graphic novel that illustrates my battle with "Tuber' (aka Tuberculosis). The illustrative style of my graphic novel is influenced by Japanese manga and anime, of which I am very passionate about. All the characters are based on real people and the narrative is a true account of what I went through. For example, the second chapter 'Fade to black' features 90 black pages, symbolising the time I was unconscious with no recollection of what had happened to me.

Lady Resilience and her sidekick Frank Lady Resilience and her sidekick Frank Lady Resilience and her sidekick Frank Lady Resilience and her sidekick Frank Lady Resilience and her sidekick Frank Lady Resilience and her sidekick Frank Lady Resilience and her sidekick Frank Lady Resilience and her sidekick Frank

Click an image to view larger version

'Lady Resilience' not only helped me deal with my traumatic experience, but also demonstrated that something positive can be found in difficult circumstance.

One last thing, people always ask me so I thought I should mention it. My sidekick is a character based on a teddy bear I have called Frank, who often serves as comfort and support during difficult times".

Vicki Lawrence


Patient Experience

Gordon

GordonWithin a few days of being admitted to the RBH I was diagnosed as having Guillain-Barre Syndrome. It is an uncommon acute disease of the peripheral nervous system and I soon lost the use of my arms and legs. It was at this point I first came into contact with ICU through its Outreach team. The possible consequences of having GBS were explained to me; the worse case scenario being that I would be admitted to ICU and, if necessary, sedated until the illness had run its course.

My condition was monitored by the Outreach team and six weeks later I was admitted to ICU. Of the 30 days spent in the Unit I was only aware of what was actually happening to me for approximately eight to 10 of those days. Whenever there was a ‘blip’ in my recovery after being transferred from ICU the Outreach team were always available to assess my situation ‘just in case’.

The critical thread running through my stay in RBH was the level of communication provided by the Unit. Being made totally aware by the team of what could happen, its consequences and what could be done for me during my stay gave me, and my relatives, the confidence in the treatment that was needed to see me through.

Four months after being admitted to RBH I was discharged but fortunately not forgotten as ICU operate a Follow up Support clinic for patients who stay in the Unit for four or more days.

After discharge from the hospital I was invited back to the Unit where the treatment I received was explained to me, a diary covering my stay was also provided along with three appointments with the Follow up clinic. All of this helped me become aware of what had happen to me and what I had put my close family through. Filling in those gaps in my life that were beginning to have a detrimental effect on my attitude to many things was an extremely
important factor in my recovery thank you all.



Dick Berry

Listen to Dick Berry's experience of his time in Intensive Care suffering from Guillian-Barre Syndrome in an interview with Sarah Walker of BBC Radio Berkshire.

Listen to the interview without YouTube


















Roger Wylie

Roger's experience as told to Dr Andrew Walden and Melanie Gager, Critical Care Sister/RaCI Lead Nurse - watch the video




Jo M

When I was asked to write about my experience in ICU I said yes without giving it a second thought. My head's been filled with all I've experienced, all that happened to me, and I know it's hard to talk about it to people who haven't been there because, no matter how supportive they are, they would never understand how it truly felt. And then it came down to me actually doing the writing and I had a moment of panic. How do I put it in words? Well... follow me.

14th September 2013, around 5:30 in the morning. My husband called the ambulance. This is one of the things I don't remember. He told me about it, told me how it happened, he told me about riding in the ambulance, about what the doctors told him, about ... well everything, I guess. I have memory gaps - quite extensive ones from that period; I can only remember it through his eyes.

I got placed in a medical coma because my whole body seemed to be shutting down. I don't remember any of that either; what I do remember with a horrible accuracy, are the nightmares. Long, cruel, painful nightmares sprinkled with short, distorted images of the surrounding reality - like when I thought all the doctors and nurses I kept seeing around where characters from Greek mythology. All my life I've been against anything that might numb my mind :I don't drink, I don't do drugs, and I run away from sleeping pills at any costs. There I was , in a coma, my body feeling so drugged, so heavy, that I kept fighting so hard , trying to wake up. Most of my nightmares were all about how I was unwillingly trapped and drugged; I dreamed about how my legs were amputated from the waist down and my body was tied in one of those terrible orange plastic bags they use to put used syringes and such in ( I have no idea how I knew this since I was in a coma .. ). The worst of them all though was dreaming the death of my husband. I'm no fragile wallflower lingering innocently through life so I don't scare easily; however, that particular nightmare is still breaking my heart.

I remember when I woke up the first time around. I was coming out from a nightmare of a 747 exploding over a military base where I was stationed; I opened my eyes and a woman saw me and said "don't panic. You had an accident , your husband brought you here". I drifted back into the nightmares wondering why she said that when I knew he was dead and I had seen his body. Next time I opened my eyes it was daylight. I saw my husband standing near the bed , talking to me. He has this beautiful voice and yet I closed my eyes and I turned my head away from him telling to myself I was having a hallucination. I couldn't speak. I didn't know it then, but I had a tracheotomy. All I could feel at that moment was my bitterness thinking I had lost him.

I woke up again after a while; it was evening and I was alone. I kept searching for a sign to tell me where I was; to my horror, I realized I could not read anything on the screens and machines around me. It all read as the doodles of someone trying to mimic Chinese characters. Then I turned and I saw this tall green machine with a big screen; I was going to learn later that that machine was filtering my blood and it was the main reason for which I was dreadfully cold all the time. I couldn't understand what was written on it because I couldn't move my head. I think I started to fret and suddenly I heard some high-pitched noise. When I looked up I saw a screen with 3 lines, a green. a blue and a red. I knew the red numbers were not good and somehow I thought in my head "I think my heart is broken now". I don't remember falling back asleep, but when I woke up next time, somebody was brushing my hair. She had a calming voice and understanding eyes. She told me her name was Emily, and she asked me to squeeze her hand if I understand her. I wanted to say thank you, but I realized (again) that for some reason I couldn't talk. Probably already ready for my newly-formed panic, she calmed me down easily, telling me that I had a tracheotomy and explained what it was. I think I drifted back to the sleep after that. It was a weird cycle of alternating reality with another world; I felt like my contact with this side was fading and I remember thinking, I don't want to wake up again because my husband wasn't there. I remember flashes - waking up, falling back asleep again, waking up - there seemed to be always too many faces around me and I kept fading off. My husband was there sometimes but I knew it was just my imagination; all the others who came and talked to me I didn't know or care of. The blonde girl, I used to see her sometimes when I woke up. She was really nice and kind and I always felt very strange not being able to thank her. But with every memory I made I felt less and less "connected" to that place. I didn't understand where I was. People would tell me when I woke up, I've heard it enough times after I escaped the coma to know it's part of the procedure , but it felt so foreign to me I would forget it instantly. One time I woke up and there was this very lively unknown man near me. He seemed to look after me. I was scared. Was I dying? The nightmares were still torturing me but every time I woke up he was there, smiling and all. Until one day I woke up and my husband was with him. They were talking to each other, and somehow I realized that he was really there. The man who was with my husband came near the bed and started to talk to me again. His accent kept reminding me of something but I couldn't place it. As if knowing what I was thinking about my husband came near me and he started to talk to me - telling me the man's name was Gilbert (I'm sure he had already told me that before but this was the first time I remembered it) and then something about him being a Spanish born Swiss. I tried to laugh but I was only making a strange wheezing sound. It reminded me of that toy called Wheezy from Toy story. It was frustrating - I had all these ideas I couldn't share at all. Gilbert was there when I first stood in a chair after all the days of coma; he looked after me with patience and strength and knew how to stop me from crying. And the best part of it all was he made it feel not like a job but like a natural reaction. Unlike others I've met during my stay, Gilbert made me really feel ... human. Not like a freak, not like an useless monster.

When I got a little better I kept being thirsty all the time; never in my life have I felt this excessive thirst, all I could think of was I wanted to drink water, I desperately needed water. I wasn't allowed to have water when I had the tracheotomy in; but I was so thirsty I just wanted to cry all the time. I remember Emily so patiently wetting my lips with a small wet sponge and how desperate I was for water. When the tracheotomy was finally out - Emily and "Athena" ( I just dreamed of her as the goddess Athena, her name was Doctor Elizabeth ..or Elsbeth I think, it always made me think of Countess Bathory ) were the first to hear my broken strange voice. It was a bit of a shock for me. I couldn't remember how my voice sounded like and when I finally was able to talk again my voice was that of a stranger. I think by that time they were starting to take out some of my lines. I no longer had one in my foot and I started to realize there are some in my neck. I kept thinking I'm turning into a bad version of Robocop.

My last day in ICU was fast, scary as hell, bittersweet and demonstrated I was (still am) a really stubborn woman. To explain to you why I say this....when I started to recover from the coma, there was some physiotherapy. It went badly. Really badly. Worst of all was that I kept having these flashes of my own nightmares, where my feet had been amputated and it was as if my nightmares were becoming real. I couldn't speak yet so nobody could understand my fears and the pain. My last day though when I could sort of speak my nurse was this tall Scottish man called Liam. He was one of those people who made you feel safe instantly. For someone who lived so many nightmares that's a big plus. I confessed to him almost desperately that I just wanted to be normal. I wanted to eat, to walk, to move. Just be normal. So he did the best thing anyone could have done for me, he let me do it. I told him I will not stay in a wheel chair because I could and wanted to walk. I don't know why he agreed to it but luckily for me, he did. He conditioned me: I was to eat a breakfast - real food, not liquid trough the nose tube. Then I was to stay on the edge of the bed for a while. And then he will arrange for me to walk normally. I felt happy. Most of all, I felt hope, the hope that I would be able to go to a normal life. I had tea, with milk. Don't laugh, but I was never a tea person and that was my first tea with milk. BEST DRINK EVER. My hands were bruised from all the lines and needles; they were also shaking so bad I could not even butter the toast slices. So naturally and smiling, Liam did it. And that's how I stayed on the side of the bed, I had breakfast, I drank tea. I drank milk. I drank water and I even managed to read a bit. After a while, the physiotherapist came and somehow Liam managed to get me out of having to stay in a wheelchair; I was to walk with one of those frames. I was arguing it mentally because I thought to myself "that's NOT for my age" but I was afraid they wouldn't let me walk if I didn't follow through. So followed by a group of 3 people I think. I started to walk. It felt like that Forrest Gump moment when he starts to run; I wasn't exactly supporting my body on that frame, in fact I found it quite annoying. But I was walking and I was glad to do that because I had decided I will not allow nightmares to become real and I will NOT be in a wheelchair. I kept thinking in my head "there are other people here who are much more unwell then I am, I have to get well and I have to go home". Home. To my husband. To life. To living. I remember people looking at me walking, surprised and smiling. And I remember saying to myself "I am alive, and I will live". On and on. I didn't walk so long; got out of my bed, out of my ICU room and walked on the hallway. By the time I got back in bed I was exhausted. It felt as if I had run a marathon. It was the beginning of long recovery trip. That evening, after helping me to shower and watching me eat again, Liam had arranged my move to the renal ward.

I've been in a coma for almost two weeks. It felt like many, many years. Years of nightmares, of fears. I know I am alive thanks to the efforts of the ICU team. I know there are many I don't remember, who looked after me at my worst. The three people I remember and mentioned here are like some small rays of sunshine in a horrible dark time I went through, and I'm sorry I never had a chance to see them after that, so I can thank them face to face for bringing me back to life. I think. in general what my ICU stay taught me was that you can come back from hell. Not only that you can come back, but you can go from darkness to light, and find happiness. I know I'm a miracle; it's less than a year since I came out of coma. I learnt to walk, talk, function like a normal person. I went back to work. And I am 14 weeks pregnant with a beautiful healthy baby who waves at us when we go at ultrasounds. I had doubts and fears. I had nightmares. I still do. But I fought a hard battle, and I won; I came out from a nightmare and found my way to a good , happy life. It taught me so much. And I believe if I made it when everyone thought I would die, anyone can do it. It was a difficult, painful trip. But at the end of it there is peace, and there is happiness.

Don't give up. And if you want to talk, talk to me. I know how you feel.

Louise Lusby

ICU curtains - It is amazing how a colour can have a profound effect on how you experience the Intensive Care Unit. As a designer I have always loved colour, especially cobalt blue, which was the colour of the curtains when I was in ICU. The blue curtains made fair haired people look as though they had silver hair and the colour of their complexion looked rather strange, despite that I thought everyone who had been chosen to work in the unit looked wonderful. As I became more aware of my surroundings I actually found the curtains more oppressive, so when I returned to the ICU recently on a visit I was thrilled to see the change of colour to a beautiful eau de nil, a pale greeny blue, making the whole place seem much calmer with a lighter feel. The staff still look beautiful!

Staff Member Experience

The patient support group has been a great success. It acts as a forum for patients and relatives to listen and be listened to in an informal environment with people that can identify with and share their experience of being critically ill. The relaxed environment appears to give patients a safe place in which to voice sensitive issues and provides an opportunity for those at all stages of their recovery to compare notes or give advice to one another.

The success of the group lies in that it is run by patients and relatives for patients and relatives, which is important in that as healthcare professionals we have experience of caring for patients throughout their critical illness but generally haven’t experienced it firsthand ourselves. The group has been particularly important for patients where there hasn’t been a follow-up service provision following their critical illness or where they are isolated either geographically or have no support network.

The group has the added benefit of having the added support of ICU staff who can address or advise on particular issues if required. I have seen firsthand as a healthcare professional the way in which it benefits the patients in our care, and also acts as a valuable feedback mechanism to staff to ensure the best possible patient experience.

Jenny Davis (Senior Staff Nurse)



Additional Information

You will find further useful information on the General Information page under Useful Leaflets.