Home Nursing Care by Families for Severely Paralyzed ALS Patients
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.
KeywordsAmyotrophic Lateral Sclerosis Home Care Amyotrophic Lateral Sclerosis Patient Aspiration Pneumonitis Home Care Program
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- 1.J. L. Houpt, B. S. Gould, and F. H. Norris, Psychological characteristics of patients with amyotrophic lateral sclerosis, Psychosom. Med., 39: 299–303 (1977).Google Scholar
- 4.F. H. Norris, R. A. Smith, E. H. Denys, et al., Home care of the paralyzed respirator patient, in: Psychosocial Weil-Being in Muscular Dystrophy and Allied Diseases. II. Coping with Progressive Disability, A. H. Kutscher, ed., Pergamon, New York (1987) (in press).Google Scholar
- 6.W. G. Bradley, Respirator support in amyotrophic lateral sclerosis (letter), Ann.Neurol., 12: 466 (1982).Google Scholar
- 7.D. Holden and E. Stanley, Home care for ALS respirator patients, in: “Psychosocial Well-Being in Muscular Dystrophy and Allied Diseases. II. Coping With Progressive Disability,” A. H. Kutscher, ed., Pergamon, New York (1987) (in press).Google Scholar
- 8.B. S. Gould, Psychiatric aspects of amyotrophic lateral sclerosis, in: “Psychoscocial Well-Being in Muscular Dystrophy and Allied Diseases. II. Coping With Progressive Disability,” A. H. Kutscher, ed., Pergamon, New York (1987) (in press).Google Scholar
- 10.R. G. Dicus, “How I Live with ALS,” Sherman Oaks (California ), Amyotrophic Lateral Sclerosis Society of America (1976).Google Scholar
- 11.W. E. Lehner, I. M. Ballard, W. G. Figueroa, and D. S. Woodruff, Home care utilizing a ventilator in a patient with amyotrophic lateral sclerosis, J.Fam.Prac., 10: 39–42 (1980).Google Scholar