The experience of a stay in intensive care is unique and singular to each patient. It will depend on the pathology, the treatments put in place, the length of stay and the history of each person. However, we can mention a few elements that can help relatives to better understand the patient’s experience during this stay and to interact more easily with him/her.
The sedated, comatose and/or confused resuscitation patient is plunged into a state of consciousness that is difficult to understand and apprehend for those who have never experienced it. He can hear and, if his eyes open, see what’s going on around him, but without integrating the information in a normal way: this is similar to what happens when we integrate a sound or a word heard during sleep into a dream in progress. These mixtures of real and dream elements can afterwards leave memories that are often strange and difficult for the patient to understand. As a family member, writing a few words in the diary about what you talk about to the patient when you visit can help them to sort things out when they wake up. Nadine, one of the former patients of the One O One network, recounts how she had the strange memory that one of her friends, who was a very good mother, had abandoned her children. When she read her diary, she realized that this friend had written (and therefore probably said) “I’m just popping in to see you, I’ve left the kids in the car”, enabling her to understand her strange memory. Many patients relate the impression of having been on a boat, probably linked to the ebb and flow of air in the ventilator tubes or in the air mattress that inflates and deflates to prevent bedsores. Others will have more violent memories of persecution. These memories may need to be deconstructed with the help of a psychologist, to enable the patient to return to a serene life after resuscitation.
Contrary to what most films portray, the moment of waking up is not a short moment, but rather a process. Depending on the sedative drugs used, the total duration of their use and the recovery of renal function (which allows them to be eliminated), waking up can take from a few minutes to several days.
Most of the time, the patient will still be intubated when the sedatives are stopped, as it is necessary for him or her to be fully awake to protect the junction between the airways (leading to the lungs) and the digestive tract (leading to the stomach). It’s therefore often a relatively uncomfortable moment, when the patient can’t express himself easily, is often lost because he has no memory of what happened to him, and is hampered by the intubation tube.
His memory may take some time to recover, and his nocturnal rhythm (day/night rhythm) will often be disturbed: it is often necessary to repeat things a lot when the patient wakes up. It is often necessary to reorientate the patient in time and space, i.e. give him the date, day and time, and explain where he is and why he is in intensive care. Writing the day’s date and the names of the day’s care team on the board in the room can help him gradually reorient himself.
Intensive care delirium is a cognitive state in which the patient is awake but experiencing hallucinations and delusions. Delirium can have multiple causes, such as certain ilnesses, treatments, sleep deprivation, etc., and can be exacerbated by age. It’s a difficult condition for family and friends, who can be particularly concerned by the patient’s personality changes and unexpected, unusual reactions. Intensive care delirium is a transient condition that may last a few days or even weeks, but will not persist once the causes have been identified and eliminated or treated.
A stay in intensive care is a difficult time. Much of the care required is often uncomfortable, worrying or even painful, despite the many precautions taken by caregivers and the analgesic (pain-relieving) treatments put in place.
Hygiene care and rehabilitation are all difficult moments for patients. Putting patients in armchairs, for example, helps relieve back pain associated with bed rest, and promotes breathing, movement and reorientation in time and space. It is, however, a major effort for patients who have spent days or even weeks in bed, and this position, by stimulating the muscles, will itself soon become painful.
Nevertheless, it is necessary to go through this stage and increase the duration of these efforts every day, to enable the patient to be discharged from intensive care. One of the roles of family and friends during these mobilizations can be to distract the patient from his pain and discomfort, by talking to him about pleasant things, or allowing him to escape to a subject that interests him, so that he can tolerate the uncomfortable position a little more each day, and promote his rehabilitation.