Mr. Klaus K. explains that he had to read lips to communicate and vice versa, and this required a lot of energy.

Il signor Klaus K. spiega che per comunicare doveva leggere il labiale e viceversa, e questo richiedeva molta energia.

Ovviamente ho anche un problema con il fatto che non posso chiederlo.
Non posso parlare. Non posso esprimermi.
Non posso dire “vorrei” o “per favore, potresti” o qualsiasi altra cosa.
Ricordo che dovevo leggere il labiale.
Ma anche loro dovevano farlo con me per capire cosa dicevo. 
Per molto tempo è stato l'unico modo per comunicare con me.
Terribilmente fastidioso. Terribilmente faticoso, nel senso che richiede anche forza.
A volte bisogna ripetere due o tre volte prima che capiscano più o meno.
Sì. Ovviamente non era molto bello. Proprio no.
Ma me ne sono reso conto proprio qui. 
Credo che dopo siano iniziati anche un po' i sogni.

Lettura del labiale

M. Klaus K. explique qu'il devait lire sur les lèvres pour communiquer et vice versa, ce qui lui demandait beaucoup d'énergie.

Bien sûr, j'ai aussi un problème avec le fait que je ne peux pas déféquer.
Je ne peux pas parler. Je ne peux pas m'exprimer.
Je ne peux pas dire : "J'aimerais bien" ou "Faites ceci pour moi" ou autre chose.
Je me souviens que je devais lire sur les lèvres.
Mais ils devaient aussi le faire pour moi, c'est-à-dire lire sur mes lèvres quand je disais quelque chose.
Pendant un certain temps, c'était le seul mode de communication que l'on pouvait avoir avec moi.
Terriblement agaçant. Terriblement laborieux dans le sens où, oui, cela demande aussi de l'énergie.
Parfois, il faut le dire deux ou trois fois avant qu'ils ne le comprennent un tant soit peu.
Oui, bien sûr, ce n'était pas très agréable. Vraiment pas.
Mais j'en ai pris conscience ici.
Je crois que c'est après que les rêves ont commencé.

Lire sur les lèvres

Herr Klaus K. erklärt, dass er von den Lippen ablesen musste, um sich zu verständigen, und umgekehrt, und das erforderte viel Energie.

Ich habe natürlich eben damit auch ein Problem, dass ich nicht stuhlen kann. 
Ich kann nicht reden. Ich kann mich nicht äussern. 
Dass ich nicht sagen kann, "ich möchte gerne" oder "macht mir doch bitte" oder was auch immer. 
Ich kann mich erinnern, dass ich Lippen lesen musste. 
Sie mussten das aber auch bei mir tun, d.h. meine Lippen lesen, beim was ich sage. 
Das war für eine längere Zeit die einzige Kommunikationsart, die man mit mir haben konnte. 
Furchtbar nervig. Furchtbar aufwendig im Sinne von, ja, es braucht auch Kraft. 
Manchmal muss man es zwei- bis dreimal sagen, bis sie es einigermassen begreifen. 
Ja. Das war natürlich nicht so schön. Wirklich nicht. 
Aber eben bewusst geworden, ist es mir eigentlich hier. 
Ich glaube, danach haben auch ein bisschen die Träume angefangen.

Lippenlesen

Susanne

Of course, I have a problem with the fact that I can't defecate.
I can't talk. I can't express myself.
That I can't say "I would like to" or "please do something" or whatever.
I can remember having to read lips.
But they also had to do that with me, i.e. read my lips when I said something.
For a long time, that was the only form of communication you could have with me.
Terribly annoying. Terribly time-consuming in the sense that, yes, it also takes strength.
Sometimes you have to say it two or three times before they understand it to some extent.
Yes, of course that wasn't so nice. It really wasn't.
But I actually realised it here.
I think that's when the dreams started a bit.

Reading lips

Most patients can't speak and have to communicate with their hands, lips or by writing on tablets. They can often hear, however, which can lead to frustration at not being understood. They talk about the need of different means for being understood by the team , for communicating with their families and receiving the moral support they need. Their experiences show the importance of knowing the right tools and ways to communicate with the patient.

Means of communication

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

Corine

Mr. Klaus K. found it very distressing that he did not quickly regain clear, intelligible speech after the tracheal cannula was removed.

Yes, actually / the time in the intensive care unit was not a pleasant one. Actually never. In no case. I couldn't talk. When I could start talking with the appropriate cannula, i.e. with the language / I don't remember how to say it. You had an expression for it. It was exhausting, crazy. I would have preferred not to have talked at all. Of course, I'm not necessarily the most communicative person either. But I don't like it when I'm not heard. And of course being heard means / or of course also says that I have to have a certain quality of speech and not just anything and half of it is then air and yes, you still have to / yes. It wasn't pleasant. You could talk, but just not really.
That was one thing. The other thing, of course, was moving when you realised that wasn't possible. Um. Yes. Being immobile. That's always the case, but of course that alone causes panic from time to time. When I realise that I don't have the option of running away. I feel like jumping away.
I : Mhm.
E : It's enough to make you want to run away. Quite simply. Because I can't. How could I? So you want to run away but can't. That's not nice either.

Unable to speak

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

Mr. Klaus K. was pleased to know that his partner was kept informed.

E : She (partner) still says today that the information was great. The doctors spoke on the phone from time to time. One of them even phoned and said: ‘Listen, I'm going down to the operating theatre now. I'm going to operate on your partner for the next six hours or so.’ But he didn't know whether I would still be around afterwards.
I : Mhm.
E : Because it was a relatively delicate operation. She always knew that.
I : Mhm.
E : She always knew whether it was a delicate operation or a relatively simple one with good prognoses. She always knew that. She was well informed. Yes.

Keep relatives informed

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

Mr. Klaus K. distinguishes the possibility of shared decision-making on a social level, as opposed to the medical decision where his opinion was not taken into account.

E : Yes, yes. For example, the transfer from health institution_1 to health institution_2, I was clearly involved in that.
I : Mhm.
E : They talked to me and clearly told me and clearly stated that Healthcare institution_2 would be the best choice. That for me as an incomplete person (paraplegia), in their opinion, there is really nothing else for healing but Healthcare institution_2. I had to agree because I have been a donator of the SPV (Swiss Paraplegic Association) for several years. I actually understood this decision in favour of Healthcare Institution_2 and welcomed it. From that point of view, yes, I was involved in this relatively important decision. I think I just had to let everything else that happened medically go. There is no ‘do you want it or don't you want it’.

Lack of shared decision making

Patients want to be involved in decisions, but they do not always have the capacity to understand and contribute. To gain confidence in the decision, patients want information about what is happening in the intensive care unit (ICU).

Klaus K.

Reading lips

Video Interview

Related experiences

Other experiences by Klaus K.

Klaus K.