Re: First visit from home health care/hospice
... Nurse was from hospice and said that she sees survival from diagnosis to death of about 1 year...
Let me chime in with only my experience and my humble opinion.
First, we found that most doctors had little understanding of ALS.
And no nurses had any understanding of ALS.
Nurses, no matter how experienced, have no qualifications in diagnosing.
Second, the ALS specialists gave Krissy the party line, 3-5 years.
But privately they told me one year. (I kept that a secret from Krissy.)
She lasted 9 months. She was totally locked in for the last 24 hours.
But also high as a kite on morphine.
I think, Neil, that your nurse was out of her depth, and shouldn't have ventured such an opinion. Three of my relatives are very experienced hands-on nurses, heavily involved in patient care for decades. But they will be the first to say that they are not doctors, and not qualified to offer such an opinion.