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I suggest you look online for ALS forums rather than here at AgingCare 🤗
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Reply to cwillie

It is very progressive with no cure. The patient needs to determine the cut off point of how much life prolonging interventions they will take. Once a feeding tube goes in, there is no turning back. Same with a ventilator. There will eventually be a specialized long term care facility. That facility may be a long distance from the original home since nursing homes may not have appropriate staff for specialized care. Imagine how it would feel to have a preserved mine locked within a body that does not function.

It will be unsustainable for you as there will be difficulty finding staff with specialized education. Sure you could be basically trained to care for life support, but you would need to be available around the clock to respond to machine alarms every couple of hours to do things like suction care and body turning.
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Reply to MACinCT

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