I am caring for my Father in law that has this disease. Hospice says he is atypical with his disease.He was diagnosed with ALS in 2002. I have taken care of him (Primary) as well as my husband and now my son for the last 3 years and Hospice a year and a half. He has no use of his legs or hands since the first 6months. He was in a Nursing home but we brought him home In the last few months I have watched his urine change color to amber then bloody looking to normal yellow. He coughs at times. We have suction Machine but nothing else other than oxygen to help him for He has a DNR order ( do not resuscitate.)He seems to cycle ( I call it that) going from his sats being 95-98 and Blood pressure from 138/83 to 98/63. His pulse 63-83. Res.16-8. temp varies from 97.5 to 99.0 in the last weeks he is increasingly losing the volume of his voice, His pain level increasing and really seeing things that are not there and ordering us to do things( he was a farmer)that are crazy. I heard that some ALS patients can get a form of Dementia is this true?
If he is on the morphine patch - that can do it as well. My mother passed away from respritory failure due to ALS in 2004 and in the last few weeks she did say some pretty strange things. She talked to my grandfather - laughed and joked with him - and he died like 10 yrs before that. Another time - I asked her how she was feeling and she said "I like cheese - I really do - it tastes like chocolate" -
All of that happened pretty close to the end. I think if you read your hospice book it will have some helpful info about the stages of passing away.
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