ALS From Both Sides
Care of an ALS Patient
By Diane Huberty, Retired RN, Certified Neuro Nurse
...and ALS Patient
What's for Lunch?
Why to get a Feeding Tube
ALS can start with swallowing problems or swallowing problems can occur later. Choking on food or liquids begins intermittently and progresses to inevitable. The immediately life threatening problem is choking badly enough to block the airway. A slower but potentially fatal problem happens as the muscles needed to swallow safely weaken, and food and liquids are aspirated into the lungs causing pneumonia.
Without a feeding tube, the process of living with ALS changes to the process of dying from it. For some people this is fine. They have decided that they do not want, cannot accept, cannot afford, cannot deal with life with ALS. That is absolutely your decision to make! But I can tell you with absolute certainty that a decision made before the reality of swallowing problems are experienced is far less a decision than a wish. As with all the decisions to be made in the course of ALS, you simply cannot know how you will feel until you are at the point where a decision has to be made. That doesn't mean the issue of a feeding tube can or should be ignored until the decision has to be made. A responsible ALS patient will educate himself or herself about feeding tubes for ALS well in advance of the need so that an intelligent choice can be made. It is important to note that a very large majority of people with ALS report that getting a feeding tube was a good decision and that they would recommend it.
At the same time quality of life deteriorates. Dehydration causes low blood pressure, dry mouth, and adds to problems with lung congestion and constipation. Meals are long and drawn out from difficulty chewing, exhaustion, and frightening choking episodes. Both patient and caregiver dread meal times and fear that each choking episode may be the last. Food choices become limited, and eventually even blenderized food is dangerous. Weight loss is significant.
There is no need to experience all the fears, frustrations, and misery of swallowing problems. In the past, most ALS patients lumped having a feeding tube in the same category as going on a ventilator. Today most patients recognize that a feeding tube is a simple, inexpensive, minimal care way to add months, if not years, to their life and quality of life. It reduces stress for everyone, can be used only for supplemental feedings, pills, and extra water and only gradually stepped up to full use when swallowing is not safe at all. And it can be removed at any time you don't want to continue with it.
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