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So, finally got mom diagnosed with severe sleep apnea with need for lots of pressure to keep her oxygen level up and airway open.


But due to her confusion, she can't remember how to put the mask on after 6 days! Has to get up multiple times a night to pee so has to take the mask off. Then, party's over. I won't stay up all night dealing with this! I have to sleep at night. I hired (with mom's $) someone to try to help her for the past 2 nights and things are no better than before.


Advice? Are there solutions for confused people? I was hoping her confusion would reduce with the use of the CPAP but if she can't/won't use it, she'll never get good sleep and that will keep her confused. UGHHHHHH

Sweetie, is very challenging taking on the job of caring for an elderly parent. I’m in that road right now with my mom with Alz dementia and now trying to get her used to the cpap. I was told she has severe sleep apnea that’s been happening for long time. No one had any idea. She would stop breathing hundred of times during the night and oxygen levels would be so slow that can just die any moment. It’s been just a month since get the first CPAP, and it was only connected to nose, but she tends to breath with mouth so it wasn’t working. Now she has the full face one since two days. Just trying to see if she can get used to it. Yesterday she took it off to go pee (even when I explained tons of times how she can disconnect the tube with just a click) and couldn’t put it back in her head. She also go pee one or two times every night even with diapers. We have a commode but not in use yet. But if rest and her health is the main thing even when it feels like dealing with it is the last thing in the world you might do, think about it. Maybe can just put a plastic bag that can be thrown away instead of having to carry and clean the bucket every time. I would hate doing it too, but had to deal with it when my dad was sick with cancer. Sometimes you just get to do things that thought would never do (like cleaning him when he couldn’t go to bath anymore and did 1and 2 on himself).
I used to have a small camera installed in her room. You can order it online. Is a cheap tiny one but works fine with an app. See and hear her. I’m in the process of installing it again.
i fully understand your struggle as I’m going myself through it right now. If there is memory loss/dementia involved could be really hard for them to learn new routines. Well, it is what it is and we have to deal with it. May we have the strength to keep doing it! Don’t give up girl!
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Reply to Pamydory67
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Sleep apnea doesn't cause confusion. It may raise the blood pressure, cause cardiac arrhythmias, a stroke or a heart attack. I believe that there is no way to make her use a C-Pap machine. Having a mask over the face can be uncomfortable and scary for a confused person. Unless they find another method to increase her oxygen level, she will risk having a stroke or a heart attack from the untreated sleep apnea.
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Againx100 - I'm curious how the CPAP situation is going for you and your mom. Any luck?
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There are high flow nasal cannulas that might work well for her. Talk to her doctor and insurance company to find a solution that is easy for her to manage.
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againx100: Imho, perhaps your mother should be treated for OAB (Overactive Bladder) to reduce the nighttime toileting. It can be treated with a medication, Myrebtriq. In turn, that may aide the CPAP issue.
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Reply to Llamalover47
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My husband with dementia is on CPAP therapy for severe apnea 35+ an hour . I truly believe his undiagnosed sleep apnea over many years greatly contributed to his condition. He finally had the sleep study when he was exhausted. His apnea episodes are now usually 1 or under.

Usually the machine itself will tell you how many hours of therapy, mask fit, number of apnea events etc. Philips and Resmed both have apps that you can assess information as well.
She doesn’t need to remove the entire mask.. just pull off tube and turn machine off or let it run until she puts tube back in.
They can also be connected to an app so you can see usage etc. As you know Medicare requires 4 hours to cover the cost. My husband started therapy about five years ago prior to dementia symptoms so it was easier. He sometimes is confused now but since I’m there, I can re-direct him
The CPAP was a God-send for us. He got significantly improved sleep, I enjoyed a snore free night and his health appeared to benefit.
As others have mentioned , there are a variety of different mask options to explore, daytime usage when you or caregiver can assist to increase her comfort and practice. Also, the sleep study group, manufacturer or medical company may be of help. I found a very competent woman at the supply company who recommended a different mask as my husband was always wiping his eyes I’m sure they have ideas that may work with dementia patients. There may even be leeway with dementia patients and Medicare coverage with a doctor intervention. She may need additional time to become at ease with it… six days might not be enough. Hopefully, you will quickly find a solution that works.
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Reply to Pat1124
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My personal C-PAP mask allows me to just disconnect the hose and leave the headgear on. If I have to go to the bathroom during the night I just disconnect at that point and leave the headgear on....very simple.
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There are chin straps to keep the mouth closed at night, jaw positioned better to help keep airway more open; have the doc consider using just high % oxygen simply thru a canula in the nose; both items not as complicated to use as a full cpap with the airway hose, etc. And there are new types of devices to keep airway open without bulky mask/tube. And depending on her medications there are herbal tinctures with high chlorophyll that enhance the oxygen carrying capacity of the bloodstream. One is ChlorOxygen made by Herbs, Etc. a medical herbalist's formula used by a lot of folks living here at 7000ft elevation where the air is thinner.
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MACinCT Dec 10, 2021
Chin strap will be more confusing. Insurance will only cover oxygen under certain circumstances. Unfortunately oxygen will not take care of daytime sleepiness if she is building up carbon dioxide related to the sleep apnea. She needs to speak to the doctor who has the sleep study results
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Does she sleep during the day? If she does maybe focusing on her using it during that time will be more manageable for you and will help her to get accustomed to wearing it too.
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againx100 Dec 10, 2021
I'm trying to get my energy and patience in order to try this today and the next 2 or 3 days before we have a telehealth appointment with someone from the CPAP distribution company. I ask her what is going on and she can't tell me! I'm like, well, we need some actual examples of what's going wrong if anyone is going to be able to help us! She'll tell me it was a bad night and she barely slept and of woe is me, but can not give me ANY specifics. Excuse me while I go beat my head against the wall!!!
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I think you have done what you can do. If she is so confused and there is no solution, you must place her where people can put the mask on again. She will die sooner than later if she does not get it back on - you have no choice.
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againx100 Dec 10, 2021
If she can't do it, and we're stuck at this horrible level of sleepiness and confusion, it is likely she will end up in a facility. Hopefully she will not have had her CPAP taken away by then and the staff can put it on for her. We'll see.
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My husband had to use CPAP. During the last few days of his life (last year), I saw on TV, a medicine that replaces machine...can't remember the name, though. Ask her doctor about it, since they would know if it is okay with her other medications. Everyone needs their sleep! Prayers are with you and your Mom.
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againx100 Dec 10, 2021
Was it a medicine or maybe it was the thing I've seen which is some kind of a device they implant in their throat and you use a remote to turn it on before bed and it mechanically keeps your airway open. It's called Inspire. I'm going to ask the sleep doctor about that when we go to him in mid-January.
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My dad, without any dementia, struggled mightily with CPAP. He went through every version of masks from small to large. He got up multiple times every night to use the bathroom and was always tangled in it and had accidents from it slowing him down. He finally took the whole thing back to the doctor and told him it was messing up his plan to die in his sleep! Despite being told how needed it was and that the apnea was severe, he lived many more years much more comfortable without it. Not saying this approach is for your mother, but for my dad, peace and comfort outweighed any benefit
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Reply to Daughterof1930
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againx100 Dec 10, 2021
I know a lot of people struggle with it and can not tolerate it. While I know that, sadly, turning in the machine might be the end game here, I am not ready to give up quite yet. Giving up means that we're out of options and that her constant tiredness and confusion are never going to improve. Yes, if it comes to that, I'll deal. But not a couple weeks into it. There is a chance, slim as it is, that it can work out. I sound like a stubborn Pollyanna!
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Can you put a portable potty right next to her bed so she won't have to take off the mask? Also, use incontinence underwear and put pads under her in case of accidents. Why isn't it better with someone there to sit with her at night? They are supposed to help her with the mask (taking it off and putting it back on).
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againx100 Dec 10, 2021
She does wear Always pullups all the time with a pad already but good idea. Oh wait a pad under her. I think I have some chux around. Or else I need to order more.

Good point about the over night person. I guess I was not as assertive as I should have been. I set up a baby monitor (audio only but how I wish it was a video style!) and told mom to ask for help when she needed it and then the aide would come in from the living room (next room over) to assist her. She didn't ask, of course. Helper was shy about going into the room unasked - didn't want to scare her or wake her or whatever. I've talked to both of them about NEXT time, it's going to be different. Going to do it on a night that she doesn't have to work the next day so she can go home and sleep vs. wanting to sleep more while here.

We have an appointment with the respiratory therapist from the CPAP company in a couple of days and I'm hoping she can suggest some things to simplify the process to make it easier for mom. Mostly I want to know if there's a different mask that is easier for confused people to make sense out of. And I wonder if the high pressure can be turned down while she's learning how to use it.
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Place a bedside commode next to the bed. That's what I did for my dad. He stands up uses the commode and doesn't have to take the cpsp mask off. I stayed awake for a few nights to train him. Works like a charm. The one thing with dementia patients they can learn new things.
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againx100 Dec 10, 2021
Ah, now I see why the previous poster suggested a commode. I'm glad it works for your dad. I am not emptying a commode. Makes me feel sick just thinking of it. But I can see where it would be a huge help if she didn't have to take the mask off and on numerous times a night. I'm sure this is at least partly where things are falling apart.

Did you mean they can or can not learn new things?
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3 ideas. With my uncle who had dementia we did pictures for everything so he could not be so confused. It would take a bit of time but pics like how to adjust a face mask in airplane etc but for CPAP.
Second. Commode next to bed (it's covered by Medicare)
Third. Urinal type device, in SNF they had me do that during the night as I was in a wheelchair and they hated answering the call button.
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Reply to GBSandRA
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againx100 Dec 10, 2021
I had her write down the 3 simple instructions for how to put the mask on. I don't think it's helped at all. She actually managed to get her mask all tangled up before bed last night and had to come get me to help her. I have NO idea how she did what she did to it. Very confusing!

Commode? No thanks. I'm not emptying that thing out every morning. That's one of my lines in the sand. Can't stomach it. And she wouldn't be able to handle it herself. Well not without spilling pee all over my house. She has a really weird gait when she walks and it's just not happening.
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Her confusion is probably just age related.

Older people find it harder to sleep,especially if they do a lot of napping during the day.

Forder the cpap, it's just confusing.

Try not napping during the day.

No liquids after 6 PM to lessen getting up to pee.

Try giving 3 mg Melatonin at night to help her sleep.
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Reply to bevthegreat
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againx100 Dec 10, 2021
Thanks for responding. I know you're right that her confusion could just be age related. I'm hoping getting a good night's sleep will help but it just might not matter.

She doesn't sleep that well, no doubt. She does nap a bit during they day. Which of course throws off night time sleeping but she's so tired. It's a vicious cycle!

She doesn't drink enough fluids in general and not much after dinner. Just mostly enough to take her evening pills. She does get melatonin already.
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If dementia is present then this is a lesson in futility. If she does not use it for at least 4 hours each night, (the machine is smart and does send data to the provider), in 4 to 6 weeks, insurance will no longer support the prescription and have the machine removed. Up to 30% cannot tolerate or are non compliant. The patients who need high pressure have a difficult time with it because they need full face masks.
I used to put dozens of people on machines at night. Those with short term memory would pull the mask off within 5 minutes before they could fall asleep. These patients would be documented as non compliant. This did not mean that staff would helicopter over the patient. This goes for you too. Staying awake for her is considered futile care.
You can take her back to her provider for other options. There is an electrical stimulator that is implanted, but she would have to be within a certain weight category and insurance may not pay yet. She cannot be morbidly obese.
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againx100 Dec 7, 2021
I haven't given up yet but am seeing that, yes, this could be a lesson in futility, unfortunately. I had seen that info that it needs to be used for a minimum of X hours for X days or else.

Interesting - she has a nose pillow style, not a full face mask.

Thanks for advising that I do not stay awake to handle this for her. I am NOT doing so. I just can't (and do not want to). I need sleep and I can't sleep during the day so I would be a miserable person.

I've heard about the implant. Darn, I didn't know about the weight limitations. That could be a problem. I was hoping that that might be an option after she gave the CPAP a good try.

Thanks for the good information!
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There are alternatives to the CPAP there are oral devices, there are surgeries that might help.
I would ask the doctor for alternative ways to correct the problem.
Yes surgery has its risks and even more so for someone with dementia.
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Reply to Grandma1954
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MACinCT Dec 7, 2021
She needs high pressures
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I've been trying to convince my mom to get tested because she's been a life-long snorer. She's 92 now and just won't do it even though she's a perfect candidate and would probably adjust to it and benefit. I have had a CPAP for the past 3 years and it has helped me so much. It did take me a while to settle on a mask preference and to stop pulling it off in a semi-sleepy state, so not sure this is something one with dementia can learn to tolerate.

I've see ads for adjustable beds that simulate how someone can automatically raise up their bed partner's side and stop their snoring. Maybe try raising up her head and shoulders a little? Hoping the noise isn't keeping YOU up at night!
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againx100 Dec 7, 2021
Is your mom having issues that could be related to lack of sleep? She seems kind of old to go for it though I'm sure she could benefit from it if she does have sleep apnea. Is her snoring bothering anyone?

My husband and I have that bed! It was either that, or one of us (HIM!) was moving upstairs. Horrible snoring and I can use a remote to raise his head more if he's having a noisy night. Works GREAT!

Thanks for responding!

Mom's snoring isn't bothering anyone. And luckily our rooms are at opposite ends of the house so I never hear it, unless we're traveling. The issue is her extreme tiredness and increased confusion.
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Ugh is right. I have to tell you, when my DH got dx'ed with sleep apnea in 2009, it took him a LONG time to get acclimated to wearing the face mask of the CPAP. He'd pull the thing off of his face multiple times a night and not want to put it back on. I'd tell him to leave it off for 10 minutes, take a break, but then I'd make him put it back on. This went on for about 3 or 4 MONTHS before he adjusted, and then he was fine with wearing it.

I can't imagine a confused elder would ever really adjust to such a thing and wonder why it was prescribed in the first place. You can't expect her to manage it, nor can you stay up all night yourself managing it FOR her. Send it back and let the chips fall where they might with your mother, that's my suggestion. Not everything is fixable with dementia; in fact, very little IS.
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Reply to lealonnie1
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againx100 Dec 7, 2021
Thanks for responding and sharing your experience. He's lucky he had you to encourage him and help him get through that super long adjustment period.

I wonder, after mom puts the mask on and off enough times, will she be able to remember??? I know - it's becoming more clear that this just might not work. That makes me soooo sad. This was my last hope for resolving anything with her capabilities. We've done blood work and med changes, which did not help at all. CRAP.
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Hi againx100, I was in the same boat as you - until today. Mom was diagnosed with severe sleep apnea on 10/8/21. She could not figure out the mask (she tried several) and relied upon me, my brother and neighbors to get her hooked up every night. This got old, very quickly. She felt like she was unable to get a deep breath but refused to undergo a sleep study at the physician's office. So...she threw in the towel this morning. The machine was returned. (She told me she hopes to die in her sleep😳)
No advice, but I totally hear you! Best of luck!
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Reply to overwhelmed21
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againx100 Dec 7, 2021
Thanks for your response. My mom is so tired EVERY DAY and is confused. I really think this could help both issues. But not unless she can use it independently, otherwise it's of absolutely no use. I've never seen one before so had no idea what it really entailed. She can still do a reasonable amount of things for herself but it's her short term memory that is really problematic so that could be an insurmountable impediment.

So sorry that your mom gave up! I am so hopeful that this does not happen to me. She lives with me and the tiredness and confusion obviously have a huge impact on her behavior and our relationship.
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