Home Nursing Care by Families for Severely Paralyzed ALS Patients

Abstract

There are many difficult problems in nursing, for example the patient with second and third degree burns over 90% of the body, but surely one of the most difficult problems is in pre-terminal or terminal amyotrophic lateral sclerosis (ALS), where mentation, the special and somatic senses are usually intact but, from supraquadriplegia, the cognisant, intelligent patient is imprisoned in his own body, fully perceptive and aware but only able to communicate by eye movements or blinks, otherwise unable to notify others of the filling bladder, the itching nostril, the need for quiet, the pain of aspiration, or the pain of being paralyzed and no longer able to contribute to the family, indeed the pain of depleting the family’s resources, both material and spiritual. Moreover, the nursing problem is usually not for a few days or weeks, while the sufferer hovers between life and death as in a severe burn, but for months or years unless untreatable pneumonia or another complication intervenes.