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My mother has been in and out of hospice for over a year. She is in AL. She has been wheelchair bound and on oxygen during that time but at least has been able to be bathed and taken to get her hair done. When I've visited she has been sitting in her recliner chair and lucid enough to hold a conversation. During the past month when I've visited I've noticed her sound asleep in her chair and just didn't have the heart to wake her. I know she has wanted to walk and has been miserable being immobile.


Last week she took a very sharp downturn and was struggling to breathe. She is now confined to her bed and is barely lucid. Today she recognized me and my cousin when we first entered her room but after an hour she didn't acknowledge us and would occasionally awaken and call out various names. She said her brother's name (who is still alive) and said a name neither of us were familiar with. She said "I want to go home", "I want to get up" and "get me out of here". She was very nervous and was continually uncomfortable and adjusting the covers. She actually told us, "you know I'm terminally ill". It was heartbreaking to see, especially since she is now on no medication (like morphine) that would cause this behavior. I did ask the nurse to give her something to calm her down.


I'm sure others in this forum have experienced/are experiencing this. I know her final days are near. It is just so hard to see her so uncomfortable. I'm not selfish, and if I need to give her up to remove her pain it's okay. I know others in this forum have said it is unfair to keep someone alive in this state when death is inevitable and I agree.

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Don’t have any words of wisdom, but yes, my mom is in hospice and getting bouts of confusion/ restlessness too. In her case, they don’t necessarily think she’s quite EOL, but it’s happening more frequently and each episode seems to be lasting longer too. I’m terrified this is going to go on for months. In another forum, an MD wrote that the only difference between restlessness and terminal restlessness is whether one dies at the end.

I’ve also read it’s quite common, but not often discussed as it’s so distressing to families. So no wisdom from me, but solidarity hugs.
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So sorry you’re going through this, it’s so hard to see in our parents. In my dad’s last days he did say some things that sounded odd and I couldn’t always make sense out of it. On home hospice we used Ativan to help calm his agitation. We were told there are 3 signs death is near, sleeping a lot in a deeper than usual sleep, stopping communication, and stopping any eating. This proved very true with both my parents. Your mom is experiencing what is a normal part of life, inevitable for us all, but that doesn’t make it any easier to watch. Hold her hand, if you are able to summon words let her know your love and appreciation, ask for calming meds, focus on memories of happier times. I wish you both peace
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I'm sorry you're going through this. Hospice should be doing everything in their power to alleviate her pain and agitation. Sometimes what comes across as agitation is pain, sometimes a simple gritting of teeth is pain, sometimes restlessness is pain. Ask the hospice nurse what she thinks is best. Many times it's a combination of morphine and something like Haldol to calm. Bless you for having her in hospice and for being such a good daughter. It is definitely hard (both my mom and dad passed away while on hospice this summer), but you will make it through. Just be there for her, hold her hand, say what you need to say.
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dseag2 Oct 2021
I'm actually an only son, not her daughter, which makes things even that more interesting. Thanks for your response!
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