How do I help my Father with CPAP

[TCLynx]

Dad is 81 and just started CPAP therapy. He was Diagnosed with Parkinson's a year and a half ago. At that time (late 2022) he had gone to the Dr with complaints of excessive daytime sleepiness (his words were I keep loosing consciousness) and difficulty finding words. He quit driving the end of 2022 because he was fearful of falling to sleep while driving. Before that time he only had mild-moderate cognitive decline where he wanted help with taxes and didn't want to drive to unfamiliar locations alone. He also started having difficulty with attention/focus for certain tasks that he used to always take care of on the farm.
Beginning of 2023 the Neurologist diagnosed Parkinson's and really didn't address the sleep issues or the difficulty finding words. We finally had to ask his primary to refer him to other specialists since that Neurologists office was not even able to call us back about adjusting prescriptions they prescribed.

He carried on through most of 2023 still able to handle activities of daily living but really not getting any support for the sleep disorder (still sleepy during day, still describing incidents that sounded like sleep walking to me.)

October 2023 he had an incident where he must have fallen to sleep in his desk chair watching TV and he fell out of it. Cognitively he has not been the same since then. The following night he started having nightmares/sleep hallucinations and the next day after that he was having night time urinary incontinence. This was all so sudden that I took him to the DR and requested they test him for Urinary Tract Infection (but it was negative.) It was back in October that we requested that the Primary Dr refer him to a new Neurologist (movement disorder specialist, it took till May to get that appointment) and we took him to a Urologist since he was wetting the bed or getting up 12 times at night to pee. I requested a sleep study because I thought the sleep disorder was perhaps rem behavior disorder because of the Lewy Body Dementia (Parkinson's and Dementia is some form of Lewy Body which tends to have sleep disorders with it.) Well the first sleep doc we were referred to couldn't even bother to call us back and every time we called them they told us to wait for them to call us.
Finally got referred to another sleep medicine practice, they were pretty quick to schedule a Tele Medicine visit with one of their nurse practitioners but about all that did was confirm that he needed to be scheduled for a sleep study which finally happened June 5th 2024. That sleep study showed that he never made it to rem sleep. He had 329 minutes of non rem sleep. 36 Obstructive Apnea, 53 Mixed Apnea and 90 Central Apnea. CAI 16.4 Total Apneas 179 and an AHI of 34.1-35.9 depending on which way you measure.

So they scheduled a titration sleep study which took place July 2nd 2024. They apparently didn't arrange for it to be a study where they could use the adaptive machine/methodology so they were only able to test the cpap or bilevel treatments and pressures. 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.

So finally on Monday July 22 the Respiratory Medicine equipment supplier came out and set him up with a ResMed Airsense 11 and I think the Mask used was an Evora Full Face s/m.

The First Night he seemed to do great actually seeming to sleep for over 7 hours straight on the machine.
MyAir said 7 hr 14 min, seal adjust 100.8 l/min, 25.4 events/hr, removed mask 2 times?
He did complain of a dry mouth that first morning so I increased the humidity from 4 to 5.

Tuesday Night he used the machine less
4 hr 52 min, seal adjust 100.8 l/min, 9.6 events/hr, removed mask 3 times?
he complained about needing to blow into the machine to make it work.

Wed Night
5 hr 50 min, seal adjust 120.0 l/min, 22.9 events/hr, removed mask 1 times?
Still complaining about needing to blow and suck from the machine to make it work.

Thurs Night
7 hr 46 min, seal adjust 73.2 l/min, 34.2 events/hr, removed mask 1 times?
He said he didn't sleep at all and was having to suck and blow all night. I know he slept some because he wet the bed alot but I don't think his sleep was very good.

Friday Night
We practiced with the mask some putting it on/off early in the evening.
3 hr 34 min, seal adjust 116.4 l/min, 17.9 events/hr, removed mask 13 times?
I actually put him back to bed for a nap this morning so he could get over 4 hours on it at least

I'm planning to call the equipment supplier Monday to see if they have any recommendations on better mask fit. It seems to be sealed well when we put him to bed and when we test the seal but something must be happening. He also doesn't seem comfortable rolling onto his side while using the machine.

Just last night I discovered that if I want to access more detailed data from the machine, that I needed to put a sd card in it. So maybe later today I can actually look at some real data and perhaps get a better idea of if this is working or not. No I'm not a doctor but I've learned that one must educate themselves about this sort of thing because the actual doctors don't seem to be able to devote enough of their resources to a single patient to really support complex health issues.

Any suggestions to help dad get the most out of this therapy? I KNOW he functions better when he gets better sleep and since I was in the room with him for the sleep studies, I know he has apnea since I could hear it. After the first study I started encouraging him to sleep on his side and I saw a marked improvement in his cognitive abilities during the day probably from simply reducing the OA events. Since starting the cpap he has had two nights of seeming to sleep a bit better but I can't say that he really had a real improvement in his sleep on those two nights. It may be too soon to tell but I hate to keep burning brain cells for too long before requesting that we try something else (like perhaps something adaptive that might reduce the central apneas too?)

I think it would be helpful for him to be comfortable rolling onto his side but I'm not sure what mask would be better for that. He does tend to sleep with his mouth open so I fear a nasal mask would be problematic as I'm not sure how we would get him to keep his mouth shut at night.

Please share Ideas or suggestions for helping an elderly dementia patient with the mask. He is not combative about it, he is really compliant and wanting to make it work but he has such difficulty communicating and since I've never used cpap myself, I'm having trouble intuiting or interpreting what he is trying to tell me.

[Pugsy]

Get the SD card installed right now. If the SD card is NOT in the machine when it is in use you can't get the detailed data because those details aren't stored in the machine's internal memory. All the machine stores is the summary data which isn't much more than you can see on the machine LCD screen. So those past nights with no SD card in the machine....all you get is the summary data.

The leaks are to the point that they could very well impact the machine's ability to record and/or respond to what is happening.....so I fear the reported AHI is probably even higher during the periods of large leak. The machine starts running into trouble recording and responding when leaks hit around 35 L/min and above 40 L/min all bets are off. Can't trust the data. At this point even a nasal mask, even with some mouth breathing leaks, is likely to be better than what is happening now.

My heart goes out to you. My mom had some similar issues and it's rough. Words are inadequate.

I doubt that this machine will be able to deal with the centrals but until we can see some reports with the leaks better managed we just don't know. While ASV is the usual go to machine for when someone has both obstructive and central sleep apnea.....it isn't totally impossible for the centrals to be reduced with the use of cpap/apap.

[zonker]

I requested a sleep study because I thought the sleep disorder was perhaps rem behavior disorder because of the Lewy Body Dementia (Parkinson's and Dementia is some form of Lewy Body which tends to have sleep disorders with it.)

welcome.

first, I'll let other more knowledgeable folk help with the CPAP. I just wanted to thank you for being a caregiver for your father. alzheimer's and other dementias are not easy to cope with. so thank you for being a caring and supporting offspring.

my concern is with you. are you in contact with any dementia support groups? they can be an invaluable tool to help you communicate with your father. plus they offer emotional support for YOU. this is a rough row to hoe. I know, because my wife was diagnosed with early onset alzheimer's in 2015. my support group has been AMAZING. I don't know what i'd do without them.

much good luck moving forward.

[colomom]

Bravo to you for taking such amazing care of your dad, I relate to how difficult it is. Definitely get that SD card, those who are more knowledgeable than me can give you some good advice after seeing the data. I wonder about the sudden change after your dad’s fall and the sudden onset of the severe incontinence. Have they looked into the possibility that his incontinence could be Neurogenic?

A few suggestions on helping him keep the mask on at night.
1. If possible try some different masks. Also keep checking mask fit.
2. Look into a cpap pillow. When you roll onto your side the pillow squishes your mask which often causes leaks, there are pillows with cutouts in the side that can help with this.
3. Get a hose hanger. Many of us who toss and turn in our sleep can get tangled up in the CPAP hose, a hose hanger can really help.

Bigger picture keep pushing the docs to help your dad’s sleep, at minimum that will improve his quality of life.
My dad has a bad heart and horrible spine and shoulder problems. The doctors tended to dismiss the sleep concerns when looking at my crippled crooked father with a bad ticker, I’m glad I fought hard to help him find better sleep without a doubt it’s improved his quality of life since he started using a PAP 2 years ago!

I completely relate to your frustration with the medical system, it shouldn’t be so difficult find competent and compassionate care!

[TCLynx]

I replied to this yesterday, I don't know what happened to my reply.

Get the SD card installed right now.

Yes, I did get the SD card in on Friday Evening. I'm kinda frustrated that neither the Doctor nor the equipment supplier mentioned that I could put an SD card in it to get some actual Data. Especially after each of them asked if I was a medical professional based on the fact that I seemed quite knowledgeable about the topic (come on it has been over 6 months since I requested a sleep study and I only requested it because my research into dad's problems had led me there.
The Leaking, I think he must be having jaw drop while he sleeps. The seal is fine when we put him to bed. I had him take a nap on the machine yesterday morning and when I went back to wake him up, I saw that his bottom lip was right at the bottom of the mask so that must be where the leaking is happening. So we need a mask that can handle jaw drop. I will be calling the equipment company Monday Morning to request a better mask for him.

my concern is with you. are you in contact with any dementia support groups?

Thank you for your concern. Yes I'm a member of a few facebook support groups for Alzheimer's/dementia and/or Lewy Body Dementia. And My Aunt (Dad's sister) let me know that I had to have dad get a night time aide since my health was at risk if I didn't because way to high a % of caregivers don't outlive their Loved One. She was right so we have had a night time aide for him most nights since February. I know lack of sleep causes cognitive problems, I was a zombie back in January before we hired a company to provide an aide for Dad at night. I know he would be doing so much better if he were getting good sleep.

I wonder about the sudden change after your dad’s fall and the sudden onset of the severe incontinence. Have they looked into the possibility that his incontinence could be Neurogenic?

After that event in October I had thought it was perhaps a UTI. Then later I had do a CT scan to make sure it wasn't hydrocephalus. At this point I'm not sure, possibly could have been a mini stroke or just that he was perhaps dehydrated and forgot to go to bed. Since that time we have been putting dad to bed, and added cameras and the pressure sensitive mat next to the bed with the remote alarm etc. Luckily the urinary urgency has improved some since the Urologist prescribed Myrbetric. Once that was mostly sorted out (well there are still accidents sometimes, that is what the bed pads are for) it was definitely time to try to improve sleep (I'm happy to wash laundry if it means he can get a good night's sleep! Though I know he HATES waking up wet.

1- gonna ask for a different mask ASAP
2- will look into a pillow
3- I did get the Hose Hanger having seen that recommendation on Youtube when we were doing research into sleep apnea.

Sorry this post came out all wonky. I decided I'd better save it as a draft since my last attempt to post a reply vanished. For some reason when I saved it as a draft I was not able to then post it so I copied and pasted into a new reply and it is showing the code in the post now and I'm not really sure how to fix it.

[Pugsy]

Sorry this post came out all wonky. I decided I'd better save it as a draft since my last attempt to post a reply vanished. For some reason when I saved it as a draft I was not able to then post it so I copied and pasted into a new reply and it is showing the code in the post now and I'm not really sure how to fix it.

No problem. I cleaned it up for you. You can edit your posts yourself (that little pencil you see on the forum editor) but it involves removing some code and leaving other code and not always easily understood. Even for me it took just a bit of work and lots of use of the "preview" button to get it the way I want it.

You can edit your own posts. Others can't edit your posts unless they have special moderator powers (which I have).

[TCLynx]

Sorry this post came out all wonky. I decided I'd better save it as a draft since my last attempt to post a reply vanished. For some reason when I saved it as a draft I was not able to then post it so I copied and pasted into a new reply and it is showing the code in the post now and I'm not really sure how to fix it.

No problem. I cleaned it up for you. You can edit your posts yourself (that little pencil you see on the forum editor) but it involves removing some code and leaving other code and not always easily understood. Even for me it took just a bit of work and lots of use of the "preview" button to get it the way I want it.

You can edit your own posts. Others can't edit your posts unless they have special moderator powers (which I have).

Thanks. Yea, I wasn't sure how much of the code to remove when I did edit the post so I just left it. I actually quite like these old fashion forums as opposed to facebook where facebook decides to rearrange the order that you see the replies to a thread to the point where nothing makes any sense anymore. I'm just not sure what is glitching on me the last few days. I use Firefox as my browser.

[TCLynx]

So searching for a different mask for dad.

I think the problem is probably jaw drop. When searching on that topic I saw some OLD (2011) posts about it and the masks recommended in that thread that I could still find the links or the masks were the Fisher-Paykel Flexifit 431 and 432 and then there was the RespCare Hybrid that I thought might be appropriate. There was one other but it still looked like jaw drop would put the bottom edge of the mask on the bottom lip and the only recommendation I saw on that one was to MAKE IT TIGHT.

So between the F&P or the RespCare Hybrid with the chin shelf are there any tips about which might be more appropriate for an elderly man to deal with. FYI no implants to worry about with magnets.

Looking at them I thought the F&P with the quick release pull cord might be a good thing because Dad has difficulty unhooking the current mask himself.

Are there any newer models I should look for?

[Pugsy]

Are there any newer models I should look for?

There are some newer models but none that really would target the jaw drop issue.

I wonder how he would do if he wore one of those soft cervical collars to help support his jaw. Lots of forum members use one to help keep the mouth shut.

[zonker]

And My Aunt (Dad's sister) let me know that I had to have dad get a night time aide since my health was at risk if I didn't because way to high a % of caregivers don't outlive their Loved One.

one hundred percent correct. good for you!

[TCLynx]

Ok so I spoke with the DM supplier. the tech who I spoke with said the F&P Flexifit 431 and 432 which are one of the main ones I saw recommended for jaw drop apparently are old styles that haven't been updated and are not carried by many anymore. It would be possible to have the 431 shipped to us but we would have to guess on what size since I guess this company doesn't carry the flex fit packs.

Their recommendation was just to get a chin strap. And that it can take time to sort things out. I'm like NO he leak rate is between 50 and 120 lpm, the therapy is NOT letting him get any sleep, he says he is having to blow and suck all night.
So she looked at the data and said OK you can come into the office this afternoon (unfortunately I can't get him an hour and a half over there today.) So they are sending some one out Thursday with a different mask and chin strap.

I'm trying to keep my mouth shut about it in front of Dad since if the CPAP therapy manages to work for him that is great but from my research, I fear that he may actually need ASV. The Doctor after his titration study said he through the centrals were just brought on by the attempts to find a higher bilevel pressure to work but seeing as his original sleep study had over 90 centrals total and only 36 OA and then 53 mixed. It seems to me that the centrals are more of a problem. Especially seeing as he was on his back for that study and still only had 36 OA and I know those lessen for him when he sleeps on his side.

Looking at a 1 1/2 hour stretch of Last night when I actually got him to go to sleep on his side. AND the mask was NOT LEAKING. He had 18 CA in that time. NO OA at all. The Pressure didn't seem to adjust in responce to anything. It very gradually move from 5 up to 6 over than hour and a half.

Later after getting up to use the restroom, he went back to sleep on his back. There were a couple Long Stretches that Oscar labeled as CSR but it actually looks to me like pretty much the rest of the night was CSR but the leak rate got much higher so I guess all bets are off about what the data really means ones that happens. He had 232 Unclassified Apnea Events, what does that mean? What about RE what does that mean, it only flagged two of those.

So I'm curious, since I don't think the Doctors actually get more than what the MyAir app shows us. Who should I be bugging to look at the Data from the SD card? Do I go into the Health Portal and attach the data to a message to the Sleep Dr?

I'm sure the issue is that the Insurance doesn't want to pay for a more expensive treatment if the cheaper one works. But How Long do we have to suffer before we say "HAY THIS ISN'T WORKING".

And I have to say I can tell from day to day if he slept better I mean simply starting to have him go to sleep on his side made the difference during the day of him being able to use the toilet independently or not.

[Miss Emerita]

I'm sure Pugsy will come by soon, and she can speak with tons more authority than I can. But I do know that patients who need an ASV are often started with a regular PAP machine, because sometimes that does the trick and ASVs are a lot more expensive. So that may be why your father is currently on a regular PAP machine.

Now that your father has "failed" regular PAP, it's vital that he be titrated on a machine that can emulate ASV. That would mean taking him to a sleep lab for a night, where they'd hook him up to a machine that can act like a regular PAP machine and an ASV. They'd probably start him with a regular machine to get a baseline and then switch to ASV.

Those unclassified events probably happened during large leaks. The machine could detect that something was happening but couldn't get a read on whether the airway was obstructed or not.

Changes in pressure can't fix CAs, so the machine won't change the pressure in response to them.

I think you need to use every route of communication with the sleep doctor that's available to you. Provide the data you're seeing: the breakdown into OAs, CAs, hypopneas (if any), and unclassified events.

If your father does well with a chin strap, great, but another way to support his jaw is with a soft cervical collar, which you can get at any large drugstore.

[TCLynx]

Now that your father has "failed" regular PAP, it's vital that he be titrated on a machine that can emulate ASV. That would mean taking him to a sleep lab for a night, where they'd hook him up to a machine that can act like a regular PAP machine and an ASV. They'd probably start him with a regular machine to get a baseline and then switch to ASV.

We did have an in lab study done June 5th where they observed the CA the OA and Mixed apnea. He never entered Rem sleep so there was no opportunity to observe the Rem Behavior disorder (which hasn't happened much lately probably because the apnea has been worse.)
Then after they looked over the results they scheduled him for the titration study but apparently they only scheduled it for the cpap and bilevel methodologies. After reviewing that, the Dr prescribed cpap pressure between 5 and 10 because during the titration study he actually entered rem sleep while the pressure was below 10 and during that study they didn't see as many CAs until they started trying higher bilevel pressures.

Anyway, I'm sure they won't accept failure on CPAP until we actually have him on the machine with less leaks for some unknown period of time. They didn't want to schedule the follow up appointment until after he has been on therapy for 31 days but before we get to 90 days (of course that has to do with insurance wanting to see compliance of at least 4 hours a night for at least 21 days our of 30 or something like that.)

[TCLynx]

Ok Why is the time on Oscar showing an hour off from what it should? I believe the time is set correctly on the Airsense 11. Is this a DST thing? Not a huge deal but it would be a little easier to figure out what's going on if the time on the graphs was not off by an hour from the rest of the world (like the camera flagging movement of the Aide helping him or my own recollection of what times he was up and I had to get up to go help him on the Aide's nights off.)
For Instance, last night he went to bed about 9 pm 21:00. But the graph on Oscar seems to show it starting at 20:00.

[Pugsy]

Ok Why is the time on Oscar showing an hour off from what it should? I believe the time is set correctly on the Airsense 11. Is this a DST thing?

It's a DST thing and this fall it will likely self correct.

With the AirSense 11 machines the only thing that you could maybe change is the time setting for Time Zones.
And the access that feature all past usage has to be erased first.
But we don't want to erase past usage data do we?

Anyhow there is a work around within OSCAR so you can see the times corrected.
Go to Preferences (upper left corner under "file")
once you click on Preferences some different tabs will open up and
you need to click on the "CPAP" tab.
Then in this tab and upper left corner you can adjust the clock drift. Ignore the warning about not using it for DST stuff.
That was written into the software before the AirSense 11 machine were released without a clock to set.
All past ResMed machines had a clock that the user could easily set.