The experience of a stay in intensive care unique and different for each patient. It depends on the patient’s condition, the treatments administered, the length of the stay, and the patient’s personal history. However, there are a few factors that can help loved ones better understand the patient’s experience during this stay and interact more easily with them.
The intensive care patient, sedated, comatose and/or confused, is plunged into a state of consciousness that is difficult to understand and apprehend for those who have never experienced it. They are able to hear and, if their eyes open, see what is going on around them, 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 blends of reality and dreams can leave memories in hindsight—memories that are often strange and difficult for the patient to understand, yet often seem more real to them than reality itself… As a loved one, you can keep an ICU diary for the patient that includes what you discuss with them during your visits, your observations of their reactions, and descriptions of their surroundings (what they can see from their bed, what they can hear or smell)—this can greatly help them make sense of things when they wake up.
Many patients report feeling like they've 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 pressure sores. 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 intensive care.
To better understand these intensive care dreams, you can join the Second Life by 101 , which brings together former patients, family members, and caregivers and shares weekly accounts of experiences in intensive care.
Testimonial from Katia The Patient's World
Contrary to what most movies portray, 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 enables 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 sedation is stopped, as he or she needs to be wide awake to protect the crossroads between the airway (leading to the lungs) and the digestive tract (leading to the stomach). It is therefore often a relatively uncomfortable moment, when the patient cannot express himself easily, is often lost because he has no memory of what has happened to him, and is hampered by the intubation tube.
His memory may take some time to recover, and his nycthemeral rhythm (day/night rhythm) will often be disturbed: it is often necessary to repeat things a lot when the patient wakes up. We frequently need to reorientate him 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 his room can help him to 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 pathologies, treatments, sleep deprivation, etc., and can be exacerbated by age. It is a difficult condition for family and friends, who can be particularly destabilized 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.
While many critically ill patients go through a period of varying duration of sedation (anesthesia) or coma, some patients remain “alert” (awake) for a significant portion of their hospital stay. But even without experiencing a period of impaired consciousness, intensive care patients intensive care go through their stay in a state of mind that is difficult to grasp unless one has experienced it firsthand. The feeling of loneliness, isolation in the intensive care unit, the loss of a sense of time as one day blends into the next—all seemingly the same—time dragging on, and obsessions related to certain sensations (thirst, fatigue, pain, itching, etc.): all of this contributes to “driving one mad” and distorting one’s perception of reality. No, loved ones cannot truly understand what the patient is going through, just as the patient cannot truly understand what their loved ones are going through.
Testimonial from KatiaThe Patient's World
Staying in intensive care is a difficult period. Much of the care required is often uncomfortable, unsettling or even painful, despite the many precautions taken by the caregivers and the painkilling treatments put in place.
Others may seem very daunting but aren’t always that difficult to endure. It’s hard to predict the pain associated with medical procedures, as it’s unique to each person and varies from patient to patient. That’s why it’s important to always try to assess each patient’s individual experience, and your knowledge of the patient is invaluable in helping healthcare providers refine that assessment.
Personal hygiene and rehabilitation can be very difficult for patients. Sitting in a chair, for example, can help relieve back pain caused by being bedridden and improve breathing, bowel movements, and orientation in time and space. However, this requires a significant effort for a patient who has spent days or even weeks in bed, and this position—by stimulating the muscles—will quickly become very painful in itself.
Difficult as this stage may seem, it is necessary to go through it and to increase the duration of these efforts every day, in order to get out of intensive care. Little by little, patients will reclaim their bodies, regain some control over their movements and, with the help of their caregivers and loved ones, slowly regain a degree of autonomy. It is important to encourage them, to support their efforts, to congratulate them and remind them of their objectives (going home, carrying out a project dear to them, etc.) without minimizing the very great effort they make, even in the smallest gestures, or even the simple act of sitting still for a few hours. One of the roles of loved ones 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 through a subject that fascinates him, so as to tolerate the uncomfortable position a little more each day, and promote his rehabilitation.