Life now……..Is very much better.
6 years ago I was lying in an ICU bed for 3 weeks while acute Sepsis from a throat infection very nearly saw the end of me.Gone are the infected organs, the traumatic hospital visits and phone calls for relatives, the knee arthroscopy, the post hospital anaemia and the follow up tests and clinic visits.
Not gone are the memories. Some are sharp like the hallucinations and the medics Happy Birthday chorus, others are fuzzy like the distant voices, beeps and lights from sedation. The superb pastoral and medical care from all the staff in ICU. The knowledge that it was so difficult for my relatives while I had no awareness of the reality.
Returning to normality probably took me 2 years, needing lots of patience to regain 12kg, crutches to get through a wobbly knee, physio and many ‘I can do that now’ light bulb moments along the way. Patience especially from my family supporting me. I still have nerve end sensations in my feet and second thoughts if I get a sore throat.
To anyone else I would say “Give it time & patience, don’t expect miracles when you leave hospital and value each little milestone.” Life now means I can walk an average 4 miles a day, do plenty of gardening, get used as a climbing frame by my grandchildren, do voluntary work at their school, take part in medical research studies and much more. I’m more health aware which is good for our family lifestyle. Most of all I am still here to keep thanking all those who helped us through it.
My 16 year old son has just returned home from a 10 week stay at the Royal Berks due to sodium valproate induced pancreatitis. He was a patient on the RBH ICU ward for 4 weeks where he was in a medically induced coma for 3 of those weeks.
Due to a rare brain abnormality my 16 year old son has global developmental delay with an approximate developmental age of 18 months so is non-verbal. The ICU team provided impeccable care to him during his stay. This started with the request to complete an ‘all about me’ document. Once I had completed this the ICU physio took key information from this to create an incredible summary on a huge worksheet to put up behind his bed to ensure all staff understood my son’s loves, dislikes and needs and this was used by every single member of the team. I was so impressed by how personalised his care was. They ensured he always had his favourite music therapy video playing on an iPad, they noted small details like his love of his hand being stroked and commented on how much this helped him. The attention to detail in their care and meeting his specific needs was outstanding in addition to the medical care they gave my son 24 hours a day. I have never trusted a team of people more.
When he was woken from his coma all the staff constantly waved to him as they passed, made him smile, and showed the most incredible compassion and love to him which was very moving. I will never forget the way they made him feel so part of their team. They were so inclusive.
The ICU psychologist met with me and gave me incredible personalised support with her knowledge of disabilities. I was highly grateful for this and gained more than I had expected from our session.
Once leaving ICU for the children’s ward the outreach team, Learning Disabilities team and the recovery after critical illness team ensured my son continued to be safe and this felt like a very vulnerable time, but we were so looked after by this team to ensure any concerns we had were acted on immediately with direct access phone numbers and very prompt visits to the ward to ensure he was safe and well cared for at all times.
We are so lucky to have our son back home after such a critical illness, and feel very grateful to be invited to visit the recovery after critical illness clinic for even more support now we are home. This feels like the trust really is going the extra mile to identify this after care need. I feel so fortunate to know they are still there for him as he starts his home recovery now.
It could be viewed that my son is very lucky to have made it through what he has done, but I know it is the expert medical care, expertise and love that the ICU team provided which saved my son’s life, not just luck. I will be eternally grateful to each and every member of the team and hope they all know how incredible they are.
A patient story – Hallucinations
I have been a patient in both the RBH and St Thomas ICU’s. I had vivid, real and frightening nightmares and hallucinations and I never think of them as dreams. Why, because dreams you forget or recall a small part of them shortly after you have woken up. However, the ICU hallucinations I believed happened and were part of my life. I still have daily memories and flashbacks in the present day recalling some of them very clearly, though I get the order of them mixed up.
At the RBH they started off with me being on my own, no one could hear me or see me and this situation continually repeated itself on the same theme with small changes i.e. being in a coffin or in my own personal hell.
The hallucinations then moved on to being in the hospital, always being moved to a new place and never fully understanding why or where I was going, but always wanting to return to my original ward. I was always bed bound, travelling sometimes by boat or plane (which I have found out since is common with other patients), I could not leave and was held against my will, but I could somehow still communicate with the people around me.
Some hallucinations included family and friends (this would have been from them visiting me), but they would never take me home, which resulted in me mouthing a few choice words on occasions I have been told. The main characters though were the medical staff that were caring for me and I recently found out the reason why one of the RBH nurses seemed to be in a many hallucinations as she had just started on the unit and was weaning me off sedation, so she was not a delirium stalker as I thought for many years.
The majority of the hallucinations didn’t include medical procedures, but some of the hallucinations turned out to be actual discussions I had with my family.
At St Thomas, there were fewer dreams which lasted longer and included other patients because unlike at the RBH I had beds opposite me.
Even though I was not fully awake, I must have taken information subconsciously, an example of this was I asked a Doctor why was I in Australia and I was later told the reason for this would have been that at the time I was being cared for by an Australian nurse.
Sometimes I thought I was fully aware of what was happening around me and would tell a nurse something I thought was real, which turned out to be complete nonsense after a short time I learnt to keep quiet, rather than let people think I was mad.
Examples included being taken somewhere as a hostage, abandoned or people trying to kill me, 9 times out of 10 it was the nurses who were trying to finish me off, but that just goes to show that it was them who were always there caring for me.
One dream was the computer at the bottom of my bed, which had the old Microsoft screen saver, the one that had moving colours going across the screen, to me it, was the countdown to the hospital being blown up.
How did the hallucinations affect me in the unit?
In the end I accepted the confusion, stress, memory loss and terror caused by the hallucinations, believing that I was unique in having these problems, but I have found out since that this is not the case. Having been through hallucinations in the RBH, when they happened at St Thomas I could still not rationally understand what I was going through and why they were happening
I did try and tell my family about the hallucinations, but always got weird looks, in the end I stopped telling them as I thought I was going insane and did not want to be labelled as a NUTCASE. I would like to point out that having a trachy in reality made it mission impossible in communicating what torment I was going through.
However, not only was I and my family affected but also my medical treatment. In my RBH notes it is reported that I pulled out my ART line and it says why “believes we are trying to poison him”.
Am I affected now?
No, I am so lucky that even though the actual hallucinations randomly appear in my mind sometimes on a daily basis, as I do not need to close my eyes and concentrate to remember them, I cannot explain why they do not bother or worry me, especially after speaking to other ex patients and hearing they are still dealing with the issues that the hallucinations are causing them long after discharge from ICU including the fear and paranoia they bring. The reason I think I can deal with it is the fact that I should have died and this is somehow my coping mechanism.
What would have helped?
At the time I was never told why and what I was going through or that’s what I thought, as the big problem was I had Delirium and I would have forgotten what I had been told anyway. Looking back it would have made dealing with stress so much easier if I could have at least had a partial understanding of the situation. The problem with hallucinations is that it is unique to an individual and even though many experiences are similar, it is extremely difficult for the staff to deal with so many different problems that are caused by hallucinations.
However, I believe the most important way of starting to deal with them is to ask the patient a simple question “Are you having hallucinations”, because as a patient to know that it is common and you are still NORMAL is VITAL. However, it is just as important to keep reaffirming this question as like me, many patients forget previous discussions about the subject.
However, it is just as vital to inform the relatives if their loved one is suffering from hallucinations, because firstly it will help with lowering their own stress and anxiety levels, but they can help to reassure and when listening about them, they do not show disbelieve on their faces.
A powerful weapon is having patients sharing their own experiences with other patients as they are in the unique position having been through it and got the T-shirt. I have been in meetings where some patients were given the chance to discuss and share their experiences with fellow sufferers for the first time and I noticed how liberating it was for them.
To finish on a cheery note I would like to point out for a few patients actually have enjoyable and pleasant dreams. But would I have wanted one, hell yer!
Patient Story – Voiceless
Having been ventilated twice, once at the RBH and then at St Thomas with a tracheostomy, I can completely understand the impact of not being able to communicate and the effect it has on the patient psychologically becoming voiceless.
As I became semi conscious/conscious from sedation, it is like I went to sleep in one world and woke up in another, my head was full of a list of never ending questions that need instant answers.
This was A UNIQUE EXPERIENCE the first time in my life that I could not communicate.
The frustration started from the moment my first question was not understood or incorrectly answered. The frustration and stress builds and builds, I started to have no patience, I could not grasp why something so basic seemed so impossible. I FELT SO POWERLESS.
I believed that I was communicating, I assumed that I was actually talking and could hear my own voice and what I was saying, even when there is no sound coming from me. This also happened when I was trying to write something, I could read what I had written, but it was actually illegible all of the time or made no sense. An example of this can be screen, it reads, “see across the room a yellow line and can you see the jacket I think it my by poachers”, basically I am saying someone has stolen my jacket.
Communicating with staff with the tracheostomy I found easier with the staff at the RBH than St Thomas, the reason being that at St Thomas I rarely had the same nurse caring for me i.e agency nurses and a large pool of nurses working at the unit. Whereas at the RBH I had the same nurses on a regular basis, so they got to know me better and got to understand my different forms of trying to communicate, pointing, hand signals, lip reading etc.
Communicating with my family you would have thought would have been easier, but it was sometimes worst, I got annoyed very easily when trying to get my point of view across, this happened in both ICU’s, I was told that I would just give up too quickly. I would try and communicate via pointing to letters but frustration would win the day and basically they were the idiots for not being to understand simple requests or questions. An example of this was at St Thomas, when I knew that I was going to be allowed to watch the TV, Mum and Dad visited, the easy part was them both understanding and accepting that I was going be able to watch TV, but then the SIMPLE fact of getting them to bring a TV guide was a step too far, funny that they could understand my choice words that followed.
I now have a better understanding of what it is like to be that person trying to understand the patient, as recently whilst on the Intensive Care unit I was with a patient using the point to letters method. I fell into that trap of guessing or pre-empting the words and frustrating the patient when I got the word wrong. I had to step back in time and become a patient again, knowing that not rushing to get the word was so important and having patience was vital.
Looking back apart from believing I was the only one having hallucinations and that I should keep quiet as if I said anything, people would think I was mental. I know understand that keeping the terrors of the hallucinations to myself was also due to the fact that how the hell could I convey and express the horrors of what had happened to me. There was no way that this could be explained via a few nods or shakes of the head or by pointing at letters. So being voiceless meant I had to literally suffer in silence.
I believe that it is vitally important to inform the patient at the earliest opportunity of why they cannot speak and explain to them the reasons in a clear and easy way. It is not only important that the patient is informed but the relatives/carer , as they as well as the medical staff will have to deal with the frustrations and numerous attempts of the patient to get answers to their many questions.
I understand that each patient is an individual and whilst one communication aid works for one, it may not work for another, this is why the relatives, nurses and doctors need to understand the various dilemma’s the patient is going through.
On a personal note, I can recommend the communication aid, the ‘Harvey Smith school of sign language’, which may only have one sign, but it did get results with my family!!!!!