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My mom has several close calls of death when came to choking. Her second time she never really bounced back. She wants to open her eyes,but it is like she is too sleepy. The hospice people told us about two months ago they thought her body was transitioning? Her kidneys are good, her heart is good, BUT it is the way her fluctuation of her heart beats and oxygen on the BP monitor that keeps us checking. She has been definitely relying on oxygen more the past two going on three months now. Her urine and BM's are good as well. She uses feeding formula and Nutri Bullet for better nutrition since the formula is empty calories. My dad sits her up on the couch to prevent more bed sores. We use a suction device to clear her air way, and this is part of the disease, so she has been using this at least 8 months now. First dx was I believe 2015?


Yes. She does sleep most of the day. She communicates with me while in bed or the couch ONLY if I ask her to. EX: She can move open and close her mouth twice for -YES. if asked. She can even look at me with one eye since she cannot seem to keep her eyes open.

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Do you live a distance away and trying to decide when you should make the trip? I see you said dad isn't asking many questions or gathering info from nurses, I imagine it's just too hard for him to hear and he really doesn't want to say it out loud so the fear of the responses he might get could be contributing. I would think that the hospice nurse would be glad to talk to you on the phone if you called while she was there. As long as you either have POA or medical proxy or your dad simply gives his blessing a good hospice service is there to help the family as much as the patient and should be happy to answer your questions and help you get a clearer understanding of whats happening. Good luck, I can't imagine how hard this must be and my thoughts are with you.
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Brwoneyes Jun 3, 2019
Thank you.
I just think my dad has so much on his mind that he just takes words at face value.
My sister and I have work and assists with care giving as well. The nurse will be back next week for me to ask the detailed questions in mean time the substitute nurse is here this week.
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Do you have hospice in the home? The nurses should be able to tell you. I'm sorry she has this dreadful disease. I am wondering when I should get hospice.
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Brwoneyes Jun 3, 2019
My dad has hospice in the home,but my dad states the hospice come across vague. He does not ask questions he just takes there word for it. I asked him today,he said. "they are nurses and I am not one. They must know what they are doing." Anyway, I decided to just locate a better website that has specifics on active dying.
Here is the web link if anyone wants to check this out.
https://www.crossroadshospice.com/hospice-caregiver-support/end-of-life-signs/what-is-active-dying/
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