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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


My grandfather, 'Papa' was diagnosed with nueropathy approx 8 years ago. He had been dealing pretty well up until this year. In Sept 2012, he lost his wife. (my Nana) Since then, he hasn't had the will to live. He was able to live by himself up until about 2 1/2 months ago when he became so weak that he couldn't get around very well by himself. He was admitted to the hospital & was supposed to go to the NH for 'rehab'. At this point, he was very vocal about not wanting to live. He did really well for a while & then the past 3 weeks of so has really gone down hill.
He fell out of the bed & broke his nose. They reset it & packed it. He went to his appt to have the packing taken out & he was unresponsive. He was then re-admitted to the hospital. Within a few days, he was unable to swallow or even sit up on his own. The placed a nasal feeding tube, put him in a Bi-Pap, & gave him antibiotics for strep in his bloodstream.
The next day, he pulled out the feeding tube, took off the bi-pap, and made them take the iv out.
On Monday, we placed him into a Hospice House. That same day, the medical director came through & mentioned ALS. We, of course, googled it, and realized that he had every sign & symptom of end stage ALS. The dr has now determined that the original diagnosis of nueropathy was wrong, and that, in fact, he has ALS.
He is now only awake for short periods, his breathing has become more labored, his apneic episodes are almost every other breath & lasting 30-40 sec, he can only take maybe 10 sips of water or other thin juice at a time. Of those 10 sips, he's aspirating half of them. Over the last 2 days he has also developed a fever.
We just don't want him to suffer & were kind of wondering how long someone could live this way? It's breaking our hearts & we know he just wants to go be with Nana.
Can someone give me some kind of insight?





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