admin July 7, 2018


The present article is based on a interview with a Japanese experienced caregiver who specializes in patients with amyotrophic lateral sclerosis (ALS), which generally leads to the locked-in syndrome (LIS). Professional caregivers for ALS patients with ventilator experience two particular temporalities in their practice. First, they must monitor the patient continuously during a seven-hour stay. Because a single problem in the ventilator can have fatal consequences, the care of an ALS patient with a ventilator (who can neither speak nor push the nurse call button) requires long periods of sustained concentration. Second, trying to understand the signs of a patient with a ventilator sometimes requires three hours to go through ten alphabets. In addition to the huge effort that such communication requires, caregivers must complete the meaning of the signs with their imagination: the ten alphabets are not sufficient to understand what the patient really wants to say. This imaginative capacity, however, is based on a long relationship, which started when the patient was still able to speak and move. That is why, as this article will show, even when a patient has entered total LIS, the caregiver can continue to realize his or her wishes.


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