8 liters per minute of oxygen for ALS hospice care
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SolarDust
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Just notice that this sentence wasn't completed properly. I mean to say "and couldn't put two and two together that her progressive muscular atrophy plus inexplicable decline in lung function = very high probability of ALS"
If it wasn't for me getting her seen at John Hopkins she would have died within months or weeks of C02 poisoning and possibly never being properly diagnosed. Extremely heartbreaking for me is despite my effort to get her the best care, which stabilized her for some time and even reversed her decline, this care reverted to complete third world country status the last few weeks of her life. This is unacceptable, and I have plans in bringing media attention to this tragedy.
SolarDust
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She was receiving hospice care in her home. She died the day after my father signed the papers for hospice care. Sadly, he did not even get one bit of actual help from this "hospice" before my mother passed away.
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I would highly recommend you see a grief counsellor to work through all of this before you take any action.
All the best, I am going to bow out of this thread now. There is obviously a lot of detail that we have no knowledge of, so I don't think we can really be constructive in helping with second hand information given to us in text.
I sincerely wish you and your father peace as you grieve xx
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Tillie,
Thanks for your kind thoughtful words. I am going to wind down on this thread and agree that it is probably not going to lead to any more insights. I thought it worth a shot to hear from other caregivers or current PALS who would be able to provide me their first-hand experiences with hospice care. I know the proper protocol based on ALS respiratory guides and numerous publications; I just thought I could hear it from CALS instead of solely medical data and evidence. I look forward to contributing in other threads to this forum.
Thanks for your kind thoughtful words. I am going to wind down on this thread and agree that it is probably not going to lead to any more insights. I thought it worth a shot to hear from other caregivers or current PALS who would be able to provide me their first-hand experiences with hospice care. I know the proper protocol based on ALS respiratory guides and numerous publications; I just thought I could hear it from CALS instead of solely medical data and evidence. I look forward to contributing in other threads to this forum.
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