How do I help my Father with CPAP

[georgiegirl12]

What mask did he get with the nasal pillows? I would not give up on it entirely. It takes some trial and error to get a good fit. Best of luck.

[TCLynx]

Well, went back to the Vitera Full Face with new settings.
Leak rate down again.
He did not get up during the night.
Seems to be operating at about baseline at least he has been able to get out and do his PT on his own and I assume use the toilet on his own since he hasn't come to be saying he made a mess.

But the DATA is showing way too many OA events.
I think our issue is that the mask doesn't seal well enough to handle the higher pressure. His centeral sleep apnea also gets worse at the higher pressures with the biLevel which is why they put him on the cpap at the lower pressure. But the lower pressure doesn't seem to be working very well against the OA.

[ozij]

It certainly looks far better from the leak point of view.

I'd start moving the EPR gradually from 3 to 2 to 1.

[TCLynx]

What mask did he get with the nasal pillows? I would not give up on it entirely. It takes some trial and error to get a good fit. Best of luck.

I think maybe it is the dreamwear nasal pillows. it is the one with the frame that has the tube go out the top of the head.

As for last night, the previous night was so bad with the pillows that we went back to the Vitera Full Face so that he could be at least sort of functional today. I have our neighbor come over and check on him and help him with lunch on the days I can't be home but I don't really want to stick her with having to help him use the toilet all day when he has a really bad night.
I don't think the nasal pillows are really appropriate for dad as even with the chin strap I think he just kept opening his mouth. At least we have been able to get the leaks under control with the Vitera Full Face (at least with the new settings.)

As far as the EPR, when I shut it off before, it didn't seem to have much impact on him one way or the other. So I'll probably try setting it to 2 tonight.

Of course the really bad night with the pillows could have been because of the full moon (the sundowning is often worse then) but I did tell him he didn't have to use the nasal pillows if he didn't want to, we could just go back to the full face mask.

[TCLynx]

Still with the full face but reduced the EPR to 2

[TCLynx]

So the Obstructive Apnea seems to be getting worse.

[ozij]

Stick to the mask that doesn't leak. Send the reports to the doctor.

I'm quoting from your first post:

The tech that night didn't think they managed to find anything to handle the centrals but when the Dr reviewed the results, he prescribed a regular cpap with pressures between 5 and 10. He thought that at the lower pressure on cpap dad did sleep and even got to rem sleep but when they started adjusting the pressures up he started having more centrals.

I went back to your first post, because I didn't remember if your dad had a titration study, and was wondering if the machine is raising the pressure because it's mis-reading his breathing, interpreting central apneas as obstructive, and the higher pressure makes all hell breaks loose. I find it impressive that the machine sees so many obstructive apneas with hardly any snoring. I wouldn't be surprised at all if they were actually central apneas and not obstructive, misidentified by the algorithm.

It's interesting to see the doctor thought something similar. Maybe he saw something in the titration report.

I'd ask the doctor of his opinion about trying a lower fixed pressure, no EPR. He should know how bad things looked without any pressure, or at lower pressures. and how much of a hazard there is in trying fixed lower pressure, compared to what is going on now. The Auto algorithm doesn't fit everyone, and it's possilbe that the rising pressure is doing your dad a disservice. He's not doing well when the pressure goes to Max. There are two ways of looking at it: The pressure is not enough, or the pressure is too high.

Do your best to get the doctor's opinion on the last flow reports, not just the numbers.


I think difference in leak between your two last graphs is much more impressive than the difference in OA's. The apneas are bad - no question about it.

[TCLynx]

Stick to the mask that doesn't leak. Send the reports to the doctor.

I think difference in leak between your two last graphs is much more impressive than the difference in OA's. The apneas are bad - no question about it.

Yea, I'll request another call with the provider or at least message the Dr again to have a look at the numbers. Apparently during the Titration study he actually did best at a pressure of 4. Now I'm sure that is a very limited snapshot since that was probably the lowest setting and they probably only stayed there a short time before they started testing other pressures (as in not even sure he had much time to have events at that pressure before they started testing other pressures.

I'm guessing that the reason we are getting a better seal on the mask lately is that they did reduce the top pressure from 10 down to 8.

That comment about the machine flagging OA that might not be OA is one I was wondering about since I remember even in some of the earlier graphs I would see some OA but I didn't see any flow limit or snore at that time or just before it so I was wondering what it is using to decide what sort of event it was.

The difference in those last two nights is just two different nights I think, both were using the same mask.

At this point in time I think we are just stuck waiting until some unknown metric says "he has suffered long enough, we can schedule him for the next sleep study to test him on an ASV"

So does anyone know what I should be asking the cardiologist for when I make an appointment for him? (What I've been told is that they won't test him on an ASV machine unless we can show that he doesn't already have heart failure.) I'm trying to make sure we don't have to wait another 3 months before the next step. (Remembering that I originally requested a sleep study for him back in October of last year.)

[TCLynx]

Well Last night we had an aide that we don't have very often and the mask seal was definitely not good. Here are the results


Tonight is my turn to help him at night. The fun of jumping out of bed and running across the yard to try to assist him before he has any accidents when he gets up at night.

I really wish there was some way to get an alert from the machine when the mask seal is that bad. It doesn't really help me to fix the problem when I don't know about the mask seal until AFTER he has taken it off. I mean the only way I realized that jaw drop was the problem with the smaller evora mask was I came into his room while he was sleeping and could see his bottom lip under the mask. He has too much trouble communicating and tends to be really confused around sleep that it is really hard to get information directly from him about how he slept and how the machine and mask are working/sealing.

Anyway, will contact a Cardiologist tomorrow and send message to the Sleep Medicine Practice Tomorrow. Again, does anyone know what I should be asking for from the Cardiologist? Will they know what I'm talking about if I say he has central Sleep Apnea and we need a test so he can try an ASV machine?

[Pugsy]

Will they know what I'm talking about if I say he has central Sleep Apnea and we need a test so he can try an ASV machine?

He/she should know exactly what you are asking about and if he/she doesn't.....not a cardiologist you want to be using.

[ozij]

Stick to the mask that doesn't leak. Send the reports to the doctor.

I think difference in leak between your two last graphs is much more impressive than the difference in OA's. The apneas are bad - no question about it.

Yea, I'll request another call with the provider or at least message the Dr again to have a look at the numbers.

What I actually said is:

Do your best to get the doctor's opinion on the last flow reports, not just the numbers.

[TCLynx]

Stick to the mask that doesn't leak. Send the reports to the doctor.

I think difference in leak between your two last graphs is much more impressive than the difference in OA's. The apneas are bad - no question about it.

Yea, I'll request another call with the provider or at least message the Dr again to have a look at the numbers.

What I actually said is:

Do your best to get the doctor's opinion on the last flow reports, not just the numbers.

Yea, I misspoke, the Dr does actually look at the flow reports not just the AHI numbers.

Will they know what I'm talking about if I say he has central Sleep Apnea and we need a test so he can try an ASV machine?

He/she should know exactly what you are asking about and if he/she doesn't.....not a cardiologist you want to be using.

Ok good to know. I'm just hoping the office staff that answers the phones will be knowledgeable enough to answer that sort of stuff too. (My experience with so much of the medical stuff for my Dad these past two years has been you request a referral and then have to wait for them to call you, the Advent Health System has a weird referral system, then you get an automated call telling your to call them, you wind up in a system where they tell you who your referral has been sent and that they should call to schedule an appointment in a couple days but here is a number if they don't call you in 3 days. Then for some who never called, I tried calling them but they kept telling me I had to wait for them to call us and I finally had to get a new referral for that one. In any case, 8 to 12 months was the waiting list time to get into see neurologists around here. I'm hoping the wait list for Cardio is much shorter.)

[TCLynx]

OMG horrible Morning for dad.

He woke up yelling for help because he couldn't breathe.
He was trying to pull the mask away from his face and Yelling "Help I'm in danger of dying."
I find it really worrying that there are LONG stretches where he was not really breathing and it wasn't leaking and then it was like the machine stopped recording? Here is the last one that happened before I think he woke up and started struggling.

and here is zoomed out a bit for that last section of the session after the machine appears to have shut off then come back on.


He was really scared this morning and incredibly shaky. At first I was checking him over thinking he'd had a stroke or something.

[Sheriff Buford]

TCLynx: I was about to post a question about Parkinsons and cpap. I did a search, and this post showed up. Your Dad is so blessed to have a daughter like you! You are a wonderful daughter! He raised you well! I was diagnosed with Parkinsons about 6 weeks ago, but I know I've had the symptoms before the diagnose and I seem to be getting worse pretty quick. Anyway, I was going post practical questions, but as I scrolled thru this post, I noticed your dad's high AHI. My AHI has almost tripled, my centrals are increasing, and my leaks are thru the roof. I personally don't worry about my AHI as long as the leaks don't wake me up. Maybe you can get him one of those plastic urinators, so he doesn't have to get up at night.

I also bought one of those small gizmos that prevent you from rolling outta bed. I don't have that problem, but the mechanism helps me roll over in bed. I also grab it when getting in and out of bed,
But the best thing about it is that I grab onto it (so I don't lose my balance) when dressing. It is one of the best investments I've made, and it's inexpensive.

I've been on successful cpap therapy for about 14 years, but any help that you can give me.... on the practical side would be helpful. Regardless of his numbers, has he recently been able to keep the mask on all night? Any help you can give me would be appreciated. I know I have Parkinsons dementia, so my issues will increase. There are great people here that will help you. Did I say you are a wonderful daughter?

Sheriff

[TCLynx]

TCLynx: I was about to post a question about Parkinsons and cpap. I did a search, and this post showed up. Your Dad is so blessed to have a daughter like you! You are a wonderful daughter! He raised you well! I was diagnosed with Parkinsons about 6 weeks ago, but I know I've had the symptoms before the diagnose and I seem to be getting worse pretty quick. Anyway, I was going post practical questions, but as I scrolled thru this post, I noticed your dad's high AHI. My AHI has almost tripled, my centrals are increasing, and my leaks are thru the roof. I personally don't worry about my AHI as long as the leaks don't wake me up. Maybe you can get him one of those plastic urinators, so he doesn't have to get up at night.

I also bought one of those small gizmos that prevent you from rolling outta bed. I don't have that problem, but the mechanism helps me roll over in bed. I also grab it when getting in and out of bed,
But the best thing about it is that I grab onto it (so I don't lose my balance) when dressing. It is one of the best investments I've made, and it's inexpensive.

I've been on successful cpap therapy for about 14 years, but any help that you can give me.... on the practical side would be helpful. Regardless of his numbers, has he recently been able to keep the mask on all night? Any help you can give me would be appreciated. I know I have Parkinsons dementia, so my issues will increase. There are great people here that will help you. Did I say you are a wonderful daughter?

Sheriff

Dad was only diagnosed around the beginning of 2023. There were some symptoms before (like mom said dad never had much of a sense of smell) like a bit of shuffling when he walked that I noticed a few years ago and I expect the cognitive decline had started back then but it had gone unremarked until 2022 when he didn't want to drive to new places alone and asked me to get him help with taxes. Fall 2022 he started having more difficulty with finding words and excessive daytime sleepiness to the point that December 2022 he quit driving because he was afraid he would fall to sleep at the wheel. Difficulty finding words and excessive sleepiness were his number one complaints.

I'm not sure what tips I can help you with other than Exercise is the number 1 best thing you can do to maintain function with parkinsons. Ti Chi, Boxing, dancing, anything with rhythm are all good. Singing and dancing are supposed to be very good for you. The last physical therapist recommended dad play music while he peddals on the stationary bike.

I do recall back in April 2023 there was an episode where he lost the ability to get dressed. I finally figured out that he had quit taking his supplements (he had always been very into health promoting supplements and foods) I went through his supplements with him and we got him back on certain things which seemed to help him regain most of his ability to handle activities of daily living. Main ones I focused on were the Omega 3 fish oil supplements, Magnesium, digestive enzymes, and COQ10 as well as B vitamins and a little vitamin D3. I suspect that the fish oil was a major player in testabilizing his cognitive function. We were stable till October 2023 when things went rapidly downhill.

Dad is so NEW to cpap but I don't think it is working for him. You might consider trying some different masks again since things have obviously changed for you, probably time to check in with your sleep Dr and make sure they know your new diagnosis. Also, you might want to make sure all your equipment is in good order and perhaps ask for another sleep study. I'm fairly certain Dad's cognitive decline has to do with sleep problems, I felt that way back in the beginning but at that time I thought it was due to REM behavior disorder because of some of the dreams he described to me which actually made me think he had been sleepwalking. Now I realize that it has probably been sleep apnea causing alot of this though there may still be REM behavior disorder, it is just that he probably hasn't gotten much REM sleep in the past 10 months which may be responsible for some of his problems too. Protect your sleep, if you can get better sleep, you may be able to slow the cognitive decline.

As for the Urinal Idea (tried that, didn't work so well, he still wound up with urine all over him, the floor, his clothes and the urinal if he remembered it.) Pull ups help as long as he keeps them on until he gets to the toilet. Having an aide to help him most nights is the only way I've survived this long, I nearly didn't make it but My Aunt (dad's Sister) said we needed to hire some help or I wouldn't survive. We did get the bed rail, yes great invention!


I'm kinda in a panic over what to do for Dad, that episode yesterday morning was traumatic. I've been calling and sending messages to the sleep Dr but they haven't responded. I've requested a referral to cardiology but the soonest appointment they could give for the consult was January 6th. If another episode happens like that, I think I'm taking him to the ER and seeing if that would get him a cardio echo sooner.