Ms Eveline E. listened to the private conversations of the nursing staff, who acted as if she was not present and sometimes felt unnoticed.

La signora Eveline E. ascoltava le conversazioni private del personale infermieristico, che si comportava come se lei non fosse presente e talvolta si sentiva ignorata.

Mi sentivo come se fossi accanto a tutti, non proprio al centro. Ho visto che sono stato messo su una sedia, ma non ricordo quando sono sceso dal letto per esempio; ero sulla sedia, e poi c'erano due ragazze che parlavano tra loro.  Erano ovviamente studenti perché parlavano dei loro corsi, del loro insegnamento; dicevano che bisogna esercitarsi per ripetere. Poi ho pensato: cosa ci faccio qui in mezzo? Non capivo cosa stavo facendo. 

I: Ha avuto l'impressione che la gente pensasse che lei non potesse sentire? 

E: È possibile, perché potevo sentirli, ma non potevo vederli. Allora, avevo gli occhi chiusi? Non lo so. Credo di aver avuto gli occhi chiusi.

La signora Eveline E ha problemi di memoria e sente di essere passata inosservata.

Madame Eveline E entend les conversations privées des soignants qui se comportent comme si elle n'était pas présente et se sentait parfois inaperçue.

E: J'avais l'impression d'être à côté de tout le monde, pas vraiment au milieu. J'ai vu qu'on m'avait mis sur un fauteuil, mais je ne me souviens pas le moment où je suis sortie du lit par exemple;  j'étais dans le fauteuil, et puis là, il y a deux filles qui discutaient entre elles.  C'était visiblement des élèves parce qu'elles parlaient de leurs cours, de leur enseignement;  elles disaient qu'il faut s'entraîner pour répéter. Puis, je me dis mais je fais quoi là entre les deux? Je ne comprenais pas ce que je faisais. 

I: Vous avez l'impression que les gens pensaient que vous n'entendiez pas? 

E: C'est possible, parce que moi je les entendais, mais je ne les voyais pas. Donc est-ce que j'avais les yeux fermés? Je ne sais pas. Je pense que j'avais les yeux fermés.

Mme Eveline E a des problèmes de mémoire et a l'impression que sa présence a été parfois ignorée.

Frau Eveline E. hörte die Privatgespräche der Pflegekräfte, die sich so verhalten, als wäre sie nicht anwesend und fühlte sich manchmal nicht wahrgenommen.

Ich hatte das Gefühl, dass ich neben allen stand, nicht wirklich im Zentrum. Ich habe gesehen, dass ich auf einen Stuhl gesetzt wurde, aber ich weiß nicht mehr, wann ich zum Beispiel aufgestanden bin; ich war auf dem Stuhl, und dann waren da zwei Mädchen, die miteinander geredet haben.  Sie waren offensichtlich Studenten, denn sie sprachen über ihre Kurse, ihren Unterricht; sie sagten, dass man üben muss, um zu wiederholen. Dann dachte ich: Was mache ich hier eigentlich dazwischen? Ich habe nicht verstanden, was ich da tat. 

I: Hatten Sie den Eindruck, dass die Leute dachten, Sie könnten nicht hören? 

E: Das ist möglich, denn ich konnte sie zwar hören, aber ich konnte sie nicht sehen. Hatte ich also meine Augen geschlossen? Ich weiß es nicht. Ich glaube, ich hatte meine Augen geschlossen.

Frau Eveline E. hat Erinnerungsprobleme und hat das Gefühl, dass sie manchmal nicht bemerkt wurde.

Corine

I felt like I was next to everybody, not really in the middle. I saw that I was put in a chair, but I don't remember when I got out of bed for example; I was in the chair, and then there were two girls talking to each other.  They were obviously students because they were talking about their classes, their teaching; they were saying that you have to practice to repeat. Then I'm thinking but what am I doing here in between? I didn't understand what I was doing. 

I: Do you feel like people thought you couldn't hear? 

E: It's possible, because I could hear them, but I couldn't see them. So did I have my eyes closed? I don't know. I think I had my eyes closed.

Mrs. Eveline E has memory problems and feels that she was sometines unnoticed.

The intensive care unit is bustling with activity. Clinical teams are busy with intensive patient care and emergencies. The environment is dominated by machines and modern technology that enable survival in critical illness.  In addition, there are team conversations and sounds from neighboring patients. This leads to noise, light, which can be disturbing for the patients.

Perception of the environment of the intensive care unit

Today's medical and technological advances allow patients to survive serious and life-threatening illnesses. Experiencing such a serious illness that requires intensive care treatment can have a profound impact on one's life.

In this section, you can learn how other people experienced their time in an intensive care unit. In short video or text excerpts, patients and their families share their experiences with a serious, often life-threatening illness and treatment in an intensive care unit. You can also learn about the changes those affected deal with after their time in the intensive care unit.

Grazie alle possibilità mediche e tecniche offerte dalla terapia intensiva, oggi un paziente può sopravvivere a malattie gravi che in passato erano mortali. L’esperienza di queste gravi condizioni di salute e l’esperienza della terapia intensiva possono cambiare la vita in modo radicale, sia ai pazienti che ai loro cari.

In questa sezione potete capire come altri pazienti hanno vissuto il loro periodo in un reparto di terapia intensiva. In brevi video o estratti di testo, i pazienti raccontano la loro permanenza in questo reparto, il modo in cui hanno gestito questo periodo della loro vita, e come questa esperienza li ha cambiati.

Esperienze in terapia intensiva

Les possibilités médicales et techniques permettent de plus en plus souvent aux patients de survivre à des maladies graves et autrefois mortelles. L’expérience par les patients de ces maladies graves et de leur prise en charge médicale en soins intensifs peuvent changer la vie d’une manière très mémorable.

Dans cette section, vous découvrirez comment d’autres personnes ont vécu leur séjour dans une unité de soins intensifs. Dans de courts extraits vidéo ou textuels, les patients rendent compte de leur séjour à l’unité de soins intensifs. Ils témoignent également des changements qui peuvent se produire dans la vie d’une personne après les soins intensifs.

Expérience en médecine de soins intensifs

Die heutigen medizinischen und technischen Möglichkeiten lassen Patient*innen schwere und lebensbedrohliche Erkrankungen überstehen. Die Erfahrung einer so schweren Erkrankung, die eine intensivmedizinischen Behandlung benötigt, kann das Leben sehr einprägsam verändern.

Wie andere Menschen die Zeit auf einer Intensivstation erlebt haben, können Sie in dieser Sektion erfahren. In kurzen Video- oder Textausschnitten berichten Patient*innen und Angehörige,  über die Erfahrungen einer schweren oft lebensbedrohlichen Erkrankung und einer Behandlung auf einer Intensivstation. Ebenso können Sie erfahren, mit welchen Veränderungen die Betroffenen sich nach der Zeit auf der Intensivstation auseinandersetzen.

Erfahrungen Intensivmedizin

Experiences in Intensive Care

Susanne

Ms Evelyne E. describes the confusion, between perception of reality and moments of joyfull hallucinations.

Well, talking like that, like they were talking to those two girls, I think that - and not talking to me; I thought I was next to them, but I wasn't involved in their discussion at all. I thought it was weird. I thought, "What am I doing here? They were doing / talking about their classes, their stuff and I was following. And I thought to myself that it's true that even people in a coma can hear. So I don't think I was in a coma, I don't know. I was just waking up, you know. 
But I don't have a bad memory. 
I: So you always think that people, even with their eyes closed, can hear? 
E: Yes. And then I got confused because I thought, what am I doing here? But what am I doing here? I don't know, I didn't understand. 

I: And afterwards, did you understand what was going on with the famous picnic, what it could be, that it was just the people doing their work in the next room? 

E: Afterwards, but not at the time, I was convinced that they were having a picnic, then that they were going to eat, then that they were going to leave. But I thought they were partying too long. To me, they were partying; I was at parties.

Evelyne E. recalls a confusion between reality and happy hallucinations.

Many patients report experiences that can be associated with hallucinations and confusion. These  memories are often present for months after hospitalization.

Delusion/hallucination/ dreams/anxiety.

Mrs. Evelyne E. slowly woke up and was confused between hallucination and beginning perception of reality.

So, I don't remember when I went in anyway; so, along the way, I don't know when, I woke up and I was hearing loud music and in my head I was thinking, there's a party in the village next to me. But it was strange, I was there in my bed, suspended; in fact I was drugged I think and then I had visions. Then, I saw people; and then suddenly, I recognized my daughter and my son. Then I said: "well, they are also at the party", but I saw them with distance anyway, it was not clear my vision either. Then. after my daughter approached me, then she said to me you like this music? Then I was going to answer, then she told me you can't because you have a tube in your throat. I didn't ask myself any questions about it. So I nodded my head and said no. And then what do I remember of this passage? That I wanted to communicate something and I asked if I could write; and then they handed me a slate where I could write on it. But I don't remember at all what I asked, what I wrote, so I've forgotten since. This is the first contact I had with it, it was this party in the village, I thought we were at a party. It must have been a bit euphoric, I don't know.

Mrs. Evelyne E. wakes up slowly and in confusion.

There is no typical way to wake up in an ICU after coma or sedation. In fact, patients are usually confused, have lost track of time and do not immediately know where they are.  Their unfamiliar surroundings take them by surprise and are sometimes unpleasant: In some cases, patients cannot speak, are thirsty and feel helpless.

Waking up in the ICU.

Mrs. Evelyne E. explains that she didn't understand what was happening to her: she wasn't given any explanations, but she didn't have the strength to ask questions either.

I : OK. So during the entire intensive care stay, you were never really aware of what was happening?
E : No, I didn't know what had happened to me. They didn't tell me that I had bled, that's why they were giving me blood, I don't know how I would have reacted if they had told me they were giving me blood because you had bled, but he didn't tell me anything at all.
I : Was it because you were intubated or (-) or even after the tube was removed, you still didn't understand?
E : No.
I : And you didn't ask any questions?
E : No. No, and then I was staring // in my head at what I was hearing, what I was seeing, what I thought I was seeing, but nothing // but my body was like it was inert, I wasn't doing anything, I was just there, I was moving, I don't know, I was //
I : And you couldn't speak either?
E : Yes, but it didn't occur to me to ask the slightest question. I wasn't asking myself any questions and I wasn't anxious, I was nothing at all, I was like in a dream, I don't know.
I : And how do you explain it now?
E : I think I was on drugs (before). In fact, later my daughter told me that she had taken a look at what I had, I was on huge doses of morphine, so I was still in that kind of thing. But I don't know how long // I didn't stay, in fact I don't feel like I stayed long. I feel like I was there for an afternoon or an evening. The next day, um what / yes they came to clean me up. Then when they ran the washcloth over my face with a very soft warm washcloth, I said ah that's really nice. I found it really pleasant, they // but I didn't ask myself why they were washing me. Why I was doing it didn't occur to me at all.

Unable to ask questions

Patients sometimes find it difficult to organise their information because their situation in the ICU is not properly explained. The result is a feeling of uncertainty and sometimes panic.

Possible misunderstandings

Mrs. Evelyne E.'s fluctuating state of consciousness means that her memory of the children's visit is fragmentary.

I : And was it the same for your visits, your children?
E : I saw very little, I saw my daughter on the first day, when I saw her there at the party, I saw my son. But after that I don't remember seeing him any more. So I don't know if he left again or if he came back, I don't know.
I : So you don't even know if they came to visit you often or not? 
E : I think my daughter came once. I could see my son in what I saw, but I didn't see him near me afterwards. And then afterwards there was a friend who had come with her, but I don't remember seeing her, then I don't know at one point, I don't know if I asked what day it was, I was told it was 10 April and then I said but that's the birthday of another friend who is in... and then they told me yes it was her birthday. But I don't know why I thought of that. But what I experienced is really very unclear. And then suddenly I found myself in a room, I can't see at all, I don't remember at all having crossed the hospital or anything. I was in another room which was much brighter. Because when I was downstairs, I thought it was dark, everything was dark. I don't know if it was my eyesight that was wrong or if my eyes were closed.

Memory gaps

Family and friends are helpful during the ICU stay. But patients want to be able to choose their visitors. It is therefore important that the team informs and involves the family.

Contact with family

Mrs. Evelyn E. is aware of difficulties in concentrating and responding.

I felt disconnected between my thoughts and my actions. ...and it's still there, it's still there when I came back after those weeks, I still have problems like that when I do something new, if someone asks me to do something suddenly, I panic. I don't know what to do.

Concentration problems

So in order to move on with your life, you need to process and categorise what you have experienced. This is a long process and being discharged from intensive care can be a very stressful time for patients.

Learning from the experience of the intensive care unit (ICU)

Mrs. Evelyn E. had the perception of being "overruled" or “guilty”.

I : Maybe there were other episodes where they made you do something you didn't want to do?
E : Well, there's only the one with the blood that I...
I : Only that one episode?
E : Yes. I don't know why it shocked me, but it even made me angry, I was...
I : Yes, you were angry.
E : “I forbid you to put that in.” He said, “I've been ordered to do it, so I'm doing it.” He didn't give me any explanation as to why he was doing it. But I didn't ask either.
I : And how would you describe your feeling of anger? Why were you angry?
E : I don't know. The idea that someone was putting blood on me without my permission.
I : So you felt coerced?
E : No, that they were deciding for me, that I had no say in the matter. But I hadn't asked for anything.
I : And that was unpleasant.
E : My anger even made me feel guilty afterwards, because I apologized. Because I hadn't been nice, but I didn't ask any more questions about the blood. By then, I think I had forgotten about it. I only remembered that I had...
I : You couldn't think about why or how.
E : No, no.

Feelings of inferiority.

Memories of physical constraints and frustration linger on.

Evelyne E.

Mrs. Eveline E has memory problems and feels that she was sometines unnoticed.

Video Interview

Related experiences

Other experiences by Evelyne E.

Evelyne E.