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It plummets into the 70’s immediately, she fidgets constantly and truly does not sleep... I have no idea what to do at this point!


There may be one clear day and then a couple of bad days followed by a 12-14 hour sleep, good clear day and the cycle just repeats.

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Is her dementia and COPD advanced? Does she have an Advance Directive. My Mom hated the oxygen cannula when she went on hospice - which I thought was all about comfort. But one of the (non-hospice) nurses described how she would die a horrible death without it and I was so stressed I didn’t challenge it.

With her brief stay in the hospital, she also removed her IV. And in the NH, she kept removing the oxygen. That seems to me to be a very decisive communication of her wishes, whether I think she’s competent to make that decision or not. If I were doing it again - AND she was reaching end stage - I would let her do anything she wanted and I would just be there to love her - not to tell her what to do or not do about her own body - and in this case her own dying process. And I would challenge nurses who didn’t know her rather than giving in to the whole authority structure of treatment. I learned a LOT that I wish I had done differently. Bottom line, it is their life. And our POA and AD is designed to honor their wishes as if they were there to speak for themselves — not to just keep them alive to postpone our grief and/or guilt. Yes, they are confused. But sometimes I think that confusion may be designed to keep the fear at bay. Things like IV’s and oxygen cannula or other medical devices at that stage fanned the flames of the fear rather than otherwise. Does it take more courage to keep someone alive artificially or to let them die naturally? It’s different for each person and each situation. So please read this as me sharing my experience as fodder for thought, not as me telling anyone else what to do.
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cherokeegrrl54 Jul 2019
A very honest post.. thank you!!
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Does her oxygen have a humidifier on it?

If not, try to get one and use saline nose spray to help make her more comfortable. The drying caused can make anyone agitated.

Have you discussed this with her doctor, maybe they can help keep her more comfortable if it is not the drying effect of the oxygen.
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My mother with dementia also was not understanding why she had to be hooked up to things in the hospital when she was there temporarily. She got quite hostile when she was "bothered" by nurses and pulled off the oxygen and monitors. At this point I asked her doctor if we could transition her to hospice-type care with no hospitalization and no attempt to try to "fix" things. The only goal is to keep her comfortable.
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Just MHO, but fidgeting can be a sign of anxiety. Can you ask her doctor about that?
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When she takes it off and plays with it, can you substitute some type of interesting object to keep her hands & minds busy while you place it back on?
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Mom also has dementia and COPD, and is always removing her oxygen. I know for a fact that she is not removing it because she just doesn’t like it ... she removes it because it’s annoying and then she just forgets to put it back on. She takes it off to go to the bathroom, or she takes it off to change her clothes, and then forgets to put it back on. I continually remind her that she has to have it on all the time, or her oxygen levels plummet. We make sure that all of the nurses know that every time they go into check with her that the oxygen has to be on. Other than that, I’m in the same boat as you, and not exactly sure what the alternatives are going to be in the future.
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Christy has little cognition, is hyperactive and flails when irritated, but she rarely has a problem with her full face Cpap mask.
The only time it sounded an alarm is when her seizure medicine made her grin so big, the face mask could not seal. {:o)
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That's a bad situation because if you choose to get her sedated with sleeping medications her breathing will slow and her oxygen saturation will drop even further. If diversions don't work I'm at a loss what to do. Have you considered hospice care? of course they will be liberal with narcotics..

Try humidification. Sometimes the nasal cannula oxygen dries and irritates the nose, even with 2 liters. Humidification helps and the sound of bubbles helps put people to sleep.
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There is a product available at Direct Medical.com - (they sell oxygen users supplies for reasonable cost) These are stickers you apply to upper checks and they have a tab that lifts and oxygen tube goes under - stick down . Gentle on aging skin. Also, instead of fastening oxygen in front where patient has access - you can fasten where it goes (over head) and behind head. Much more difficult to get it undone. Another product from direct medical - a gel that goes in nose (very little needed) to stop dryness. Maybe that will help too. (You can't use Vaseline or any product containing petrolatum around oxygen (flammable).
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Isthisrealyreal Jul 2019
Is that the product called Nose Better?
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That's tough. My husband was like that ... I'd come to visit him in SNF and his oxygen cannula was on the floor or on the bed (he has COPD also). I'd have to ask him why (he "never knew") and I'd put it back on him. As long as someone was there, he'd leave it alone -- but the minute I left for something, off it would go.

Does she get breathing treatments? How does she tolerate that mask? If the cannula is irritating her, the mask might work better.
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