I wonder about these things too, Irismarie. I have found a good source of information to be Joel's web pages at
Living and Surving with ALS . Joel got a trach and vent while he was still healthy and found that living with the trach was very manageable.
As I'm sure you know, a trach or tracheostomy is an opening through the throat into the trachea or "windpipe". A tube is installed which leads to an electric ventilator or vent. This pushes air in and lets it out, breathing for the patient who cannot breathe on his own. As the PALS' breathing becomes weaker, the first step is usually external ventilation with BIPAP, and some people can do well on this for a long time. But usually it eventually comes to the point where BIPAP is not enough and then the decision must be made whether to get a trach or basically let life come to an end.
If you do go on a ventilator (and get a PEG) then your body can be kept alive for a long time, perhaps indefinitely. Your ALS will still progress and you will eventually probably get to what they call the locked-in state. Usually PALS retain some minimal control of their eye muscles and perhaps face muscles though. Stephen Hawking, the physicist, has had ALS for 40 years and communicates with a computer that he controls be twitching a cheek muscle. He still writes scientific papers, gives speeches, etc. So if you are determined and adaptable, you can continue to interact with the world potentially for a long time even with ALS. This is why Joel says ALS does not have to be fatal. Eventually something will get you, of course, life is more dangerous for someone living like this and there is risk of pneumonia and other problems. But in principle it can free you from the dreaded 2-5 year time line that you usually hear about.
There have been a number of discussions about whether the decision to go onto a trach can be reversed. It may depend on the local laws and policies, and also on how clearly the wishes of the PALS are spelled out in advance. If you just pull the plug on someone with a trach they will probably die in short order, so you have to make sure that no one will get in trouble for this. Again, it depends on local laws, but at a minimum I think it would be wise to make a written statement of your wishes and get it witnessed.
Life with a trach definitely appears to involve a lot more work for everyone. The main problem seems to be that the natural processes of coughing and throat-clearing no longer operate, so fluid "secretions" build up in the lungs. These have to be removed with a suction operation applied by a caregiver. This involves removing the ventilator hose and inserting a tube attached to a suction device down into the trachea. This is moved around to capture the fluid drops, then the ventilator is re-attached. Different people have different needs for suction, ranging from maybe 3-4 times a day to 20 times a day or more. I gather that this is the biggest work load and restriction for people on vents. In addition there are other less frequent maintenance tasks involving cleaning and replacing various parts, which may happen once a day or less often.
Joel has a video on his site of his wife suctioning him, which I found very useful to show what is actually involved in concrete terms:
Suctioning video
Suctioning looks pretty scary but I have read many stories about ALS patients living at home with a trach and most say that it is manageable. The main thing is I think you need 2 or more caregivers to take turns, because with this on top of all the other caregiving needs it just becomes too much. Many people have said they can train relatively unskilled caregivers in the basic procedure.
Well, I am rambling on here but it is all second hand knowledge, so if I have made any mistakes I apologize. This is definitely a subject I am interested in for the possibility of long term survival.
