We went to Ann Arbor for a check up this past Wednesday and during the course of the visit, the nurse practitioner brought up the subject of breathing interventions, invasive and non-invasive and whether or not my husband would want a vent when his breathing gets to that point. My husband said yes so she proceeded to speak about being on a vent and that at some point ALS patients become "locked in", unable to even blink to communicate. Now, I can't remember if she said that this happens to all ALS patients or not but, she also told us about having a directive stating "I don't want to be locked in past __ days and if I am, I give my wife the permission to end the vent." At that time, hospice would start a morphine drip and slowly decrease the vent until the vent is totally off and the person would just pass away in their sleep. We've since spoke about that and have been trying to come to terms with it. At this time, especially since he is still able to breath well on his own, it is hard to decide whether we could say, yes, "pull the plug". Does anyone have any insite into this matter. Do you know if it is a case that all ALS patients that are using a vent become "locked in"? I know the decision on the end is totally ours but, would just like some insite and input from others. Thank you in advance.
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