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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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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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Just MHO, but fidgeting can be a sign of anxiety. Can you ask her doctor about that?
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Can they swap mask for direct nasal application? - will depend how agitated she is.
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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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What else is going on besides the dementia? Maybe I've come to the party late, but I don't see any other illness listed that needs O2.
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Snowlady90 Jul 2019
My Mom has COPD and lung cancer. She has been on oxygen for two months now and typically realizes she is dependent on it but when she is having delusional moments she takes it off and plays with it.
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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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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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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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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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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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Your follow up post says that your mom has COPD and lung cancer. It says that she gets distracted and removes oxygen and plays with it. I'd consider if she is able to make decisions for herself at this point. I'd go with what you think she would want, if not. Then I'd discuss it with her doctor to see what the options are. If you want to ensure that she doesn't remove it, whether during the day or night, then, someone would need to supervise her around the clock, ensuring that she doesn't remove it. She isn't able to monitor that for herself any longer, so, having supervision is the only way. Of course, maybe, there are other options, such as Hospice. Perhaps, they could address how she may stay comfortable.
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Dementia or not it is probably uncomfortable and drying.
I recently had surgery (cataract) so during the procedure I had to have the oxygen and I am in possession of my faculties (at least I think I am ;)) and I found it annoying, uncomfortable and I did not like the noise. Not to mention the smell of the plastic was not pleasant.
So I can fully understand why someone that is not with all their faculties would try to remove the cannula.
With the dementia she probably has no idea why this thing is stuck in her nose.
Bringing the tubing from behind might make it more difficult for her to remove.
This may be an ongoing problem until she declines more and can not figure out how to remove it.
Give her something to fidget with that may keep her hands busy and she might forget about the tubes.
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So very important to remember that victims of dementia usually do decline and move to the next phase. It is so very hard for them and the caregivers. If putting the tubes behind her head and using vaseline or something for dryness helps...do it. You will move to other phases as well...like my mom did. If no one came to her when she called help, she tried to get up and fell many times. First time she fractured her collar bone! Usually her calling out was because she needed to use the restroom or something was bothering her. Then it was that her mother wasn't there to pick her up and she would be late to school! I would tell my mom not to worry because she was in summer break and no school today! Oh yes...this dementia thing is tough. Hang in there and try to laugh when you can. It will change soon.
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Thank you everyone for all of the great advice! Because of all of you my precious mom and our family are no longer alone in this journey and that is such a blessing.

They now think there is actually no dementia instead it seems that my mom's CO2 levels are out of whack due to the COPD causing the utter confusion (seeing objects and people not there and imagining all sorts of actions, reaching for imaginary objects) and the lack of sleep just magnifies the problem (48 hrs. no sleep at all, including naps, followed by 12-14 hrs. deep sleep). When she does wake up after sleeping she is totally herself, rational, talking and laughing just like normal. She is on Hospice for the COPD as they were never able to do a pet scan to try and determine if the nodules which appeared in her right lung ,and have now spread to the left lung, were actually carcinoma but all evidence points that direction with no "breathing sounds" being present in her left lung at this time.
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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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Find the kind of O2 that cannot be removed. It's important to keep her oxygen saturation up.
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Her dementia is very bad so I see only the following options. First, somehow, if possible, make sure that someone monitors her every waking moment to make sure she has the mask on. If that doesn't work, isn't there some way it can be taped on in such a way that she can't take it off. Third, if the dementia is that bad, it may be that her time is coming close and if so, let it be. Don't force her to suffer just because you want her here. When they are that bad, let them go so they have peace.
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