Laura Barnett Psychotherapy
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Making Sense of your ICU Experience for COVID-19 Patients and their Relatives
 

I have written these notes principally for you, the patient, who had to be admitted to Intensive Care as a result of COVID-19, but it should be helpful also for your relatives and carers.

My background: In 2001 I started studying patients’ experience of ICU and then set up a Psychological Aftercare Service for ICU Patients at Croydon Hopsital, the first routine service of its kind in the UK. During the following fifteen years until my retirement from the NHS, I saw many hundreds of patients who had been ventilated on ICU. I have spoken at training days and conferences nationally and internationally about patients’ experiences of ICU.


My aim: to acknowledge some of the thoughts and feelings you may have been experiencing; to reassure you by showing that they are normal; and to help you make sense of your experience, which should aid your recovery. 


A Brief Word for Relatives

For you, the relatives, it will have been a roller coaster of emotions, knowing that someone so close to you was alone, fighting for their life in Intensive Care, especially so in these strange times when visitors are not allowed into hospital. The thought of a loved one being ill and all alone in hospital is painful and distressing. The thought that they might end their days alone can feel unbearable and goes against our most fundamental feelings about family, friendship and basic humanity. And, particularly in this time of heightened anxiety, this may confront you too with thoughts and feelings about your own death or that of other loved ones.


Being ventilated on Intensive Care is one of the most extreme situations anyone can face. You would not have been ventilated on Intensive Care unless your situation had been very serious. So if you are reading this, you must have had a very tough time, and whether you are aware of it or not, you will probably have fought for your life or, at the very least, shown some determination to ‘hang on in there’. 


Patients’ Memories of ICU

 

How you remember ICU will be personal to you:

You may remember what it felt like to be admitted to ICU, to be all ‘wired up’, you may recall the nurses, the sounds, the light, your dreams, your feelings, you may have some ‘flashbacks’. Or you may have  only a few vague impressions of that time, or even no recollections whatsoever. Remembering some things about ICU and not remembering anything about ICU are both very common; even feelings of having died are not uncommon.


Some people have a sense that they died and then ‘came back’: they speak of seeing a white light at the end of the tunnel, of flying over white clouds with deceased loved ones, or of being in pastures green, or else of seeing ‘nothing’, and then they got a sense that ‘it was not my time’. (It could be that these extraordinary experiences correspond to particular recorded medical situations, but we can’t know for certain; so we can only acknowledge how powerful these experiences were.)



After a stay in ITU many patients feel that ‘life has been turned upside down’.  Every patient’s experience of ITU is different, but there are some feelings that a lot of patients share.


ICU: a hi-tech world that looks like something out of sci-fi

Coming round in ICU and finding yourself wired up to monitors, unable to move or even speak, in an alien environment that looks like something out of sci-fi films can be really terrifying. And however kind and helpful the nurses and doctors, some of the interventions they have to perform, such as intubation and extubation, are likely to have felt very unpleasant, invasive and frightening. It can be especially frightening to notice or sense people dying around you in ICU and wonder whether your turn might come next... 

 

‘I had the strangest dreams.’

ICU vivid dreams and hallucinations are probably not like any dreams you will have had before - and they may be your only memories of ITU. They are so unbelievably vivid that it is often difficult to distinguish between them and reality. You may have told your relative that you were sure that a doctor or nurse was trying to kill you, that you were being spied on through the holes of the polysterene-tiled ceiling, that sexual orgies were taking place and babies were being born on the unit. If so, you are likely to have been met with a mixture of laughter, disbelief and anxiety. And if your vivid dream experience was met in this way, this can be confusing and upsetting - both for you and your relative.


Vivid dreams and hallucinations in ICU (sometimes unhelpfully called ‘delusional memories’) are a common occurrence and one of the major causes of distress for patients who have been in ICU, however this particular distress can usually be easily lessened. 

If you want to try to make sense of your vivid dream experience and find out how that can help, you can look at my paper ‘Making sense of your vivid dreams and hallucinations’. This has been my particular area of expertise over almost 20 years, and in that paper I give some tips on how to try to understand them.

 Making sense of ICU dreams can help you move from a feeling of panic to a sense of empowerment.

If you are still suffering from these dreams, I would strongly recommend that you read that paper, as there is a greater risk of your developing Post-Traumatic Stress Disorder (PTSD). 



‘It’s like time got lost.’

Did you get the sense that ‘it’s like time got lost’? Most patients get it, it’s not simply a few lost days or weeks, but that strange feeling that life went on without your being aware of it.


‘Lost time’ creates a sense of discontinuity which can carry on for months and even years, especially if something significant happened in that time: I used to give the example of people being admitted into ICU in New York before 9/11 and waking up just a couple of days later into a changed world, people who will never have any personal recollection of 9/11. 

With Covid-19, maybe some of you were admitted to hospital before lockdown and could not understand why you didn’t have any visitors. Nor could you understand what relatives were going through and you might never quite understand those early days of mounting anxiety. And if, while you were in ICU, there was a special event, such as your birthday, there is the strange feeling that the missed birthday missed will never return.



‘I don’t know what happened’

When nurses or relatives tell you what happened to you, and what you may have done (pulled wires off yourself, sworn at staff, punched a nurse in the stomach), you may find it difficult to understand. It can be difficult to piece your own story together, as these are other people’s observations and experience of you in ICU, not your own; and how do you fit in the vivid dreams, the hallucinations? What of all the big gaps in your story?! Not having a personal storyline can feel distressing. You may also have trouble concentrating and remembering things.  This is not unusual.

Some of you may prefer not to know what happened, you may prefer to leave it at: ‘I was very ill, I got admitted to ICU, but now I’m much better.’ 

We each have our different ways of dealing with a situation and we need to respect them.


Coming home after your Coronavirus

ICU experiences




‘It’s all so confusing.’ 

Being discharged onto a general ward from ICU and then finally home, while obviously great steps forward, can leave you with mood changes and very mixed feelings: apprehension, irritability and anxiety sit side-by-side with relief and excitement. This is quite normal.  


You may find yourself focusing at times on the frightening thought of ‘I almost died’, while at other times there might be the wonder and relief of ‘I’m alive’; again it is normal to oscillate between the two and between all sorts of emotions that are personal to your story.


Flashbacks

You may find yourself in situations that ‘take you back’ to ICU (for instance a ceiling in a shop might remind you of the one in ICU), that is normal and OK. You may find yourself at times reliving some of your time in or just after ICU, this can be a way of reconnecting with the strength you showed in your fight for survival. That is also normal and OK. 

However, if flashbacks and images occur frequently or affect your everyday life, though sadly not unusual, this is not OK; it is lilely to be a sign of PTSD. So report this to your GP and ask for help; trauma counsellors specialise in PTSD.


Existential questions

A stay in ICU also brings up all sorts of existential questions and reflections like: How did I catch Covid-19? Why me? I survived, but why? And what did I survive for? What now? What next? Again that is quite normal. 

The search for a ‘cause’, besides simply wanting to know, is often  about trying to regain control over the world and yourself, when everything feels out of control. In my experience, patients often follow the question ‘why me?’ with ‘I’m not a bad person’, because we usually have the underlying belief that life is fundamentally fair - which sadly it isn’t, or certainly not obviously so! The question ‘Why me?’ can challenge your whole system of values and beliefs: beliefs about good and evil, right and wrong, the existence of God - a God of mercy or a vengeful God? 



Looking to the future

You could keep asking ‘why?’ and ‘why me?’ and it could keep you stuck in a victim place, depressed or even desperate; but such existential questions can also be the beginning of taking stock and thinking about the future, even if it feels bleak. The choice is yours.


‘What now? What next? What did I survive for?’ open up the question of your day to day present and your future, about its challenges and uncertainties, but also about what might now be your heart’s desires and your priorities. These are questions about what gives meaning to your life, about the values you want to live by, the realistic possibilities before you, the choices you have - and the obstacles that might get in the way (physical and logistical ones, but also, for instance, not knowing how to say ‘no’ - a problem for many people!) Remember that while there are things which you cannot change in your life, there are others that you can change.



Lockdown and self-isolation will add another dimension to your return home: these are strange and uncertain times and people’s emotions are running high - or are stuck at a low point. 


If you do choose to take stock after your stay in ICU and your fight against Covid-19, you may want to ask yourself the following question: Three years from now, when I look back at this time, what would I like to see?

Those who, during lockdown, were lucky enough not to have to battle difficult life situations (such as illness, bereavement, living conditions, financial worries, loneliness, personal history issues) may wish to feel that something valuable had emerged in that time. But for all of you who did have to deal with illness and maybe difficult situations during lockdown, “I survived and I coped” will be in itself an achievement worth remembering and honouring. 


Lewes, May 2020