Suggestions, please?

Another update: Dad's wearing the mask tonight! It didn't take long to get him there, and I'm really happy about that.

Hopefully, I'll have some really good (and accurate) data to look at tomorrow. I did place the urinal on his bedside table and asked him to use it tonight if he has to get up to go. And I did change the settings on the machine to enable auto on/off (which I've never used, myself); as soon as I gave Dad the P10 and watched him put it on, the machine started up and we were off to the races. LOL

I've been sitting just outside their bedroom for about an hour now, listening for a leaking mask, but everything is quiet. Their TV is on, so I'm not sure if he's sleeping yet, but I'm optimistic. He was really tired today, so I hope he's already zonked out. I'll go in and check on him before I go to bed, myself, and see if everything's okay. I'm crossing my fingers that he's got it adjusted well and I'll get reliable data out of this therapy time. We'll see in the morning.

Cross your fingers, everyone!

Looking forward to your updates. Don't be too disappointed if things don't go perfectly, as you've made great progress and overcome the most difficult part...attitude.

Pugsy wrote:
..the doctor and my brother are both idiots but I can't do anything about it..long story there.

I just loved this line! My brother is an idiot, too. I am pretty sure he has OSA, and I am not the first to say so to him, but who knows if he will ever look into it.

I do not intend to hijack this thread, just liked the line above.

jilliansue wrote: I just loved this line! My brother is an idiot, too. I am pretty sure he has OSA, and I am not the first to say so to him, but who knows if he will ever look into it.

I do not intend to hijack this thread, just liked the line above.

Yeah...you know we can't fix Stupid no matter how hard we try. I gave up trying because it wasn't worth World War III or causing me to stroke out with my blood pressure because I was so mad.

I am so glad Bleeping Beauty has had more success with her father than I had with my own brother.

New update: Dad's doing great with the machine! He did wear it all night last night (about 13 hours total) and still had the mask on this morning when I woke up. I could hear it leaking some (the tape I've been using over his mouth comes loose), but I didn't want to disturb him by trying to adjust it, so I just let it go. Here's his data:



I've readjusted the top end of the pressure to 14 for tonight, and we'll see how he does with that. He's been wearing the mask for a few hours already tonight, and I hope it again stays on all night. I'm feeling very optimistic about it. We're set to see his GP tomorrow for a conference re: people with chronic conditions; not sure if I'll be able to meet/speak with her then but, if not, Mom and Dad are scheduled to see her for a regular appointment next week, and I'll bring up the oximeter and xPAP then.

He told me today that he's willing to do what I suggest, as he knows I'm here to help him. And Mom seems to be less contentious and more relaxed, too; she still worries about him whenever he gets up (to go to the bathroom, the kitchen, whatever, out of concern that he'll fall), but she sees his willingness to go out of the house with me and sees that he's in better spirits. Even with the mask leaking so much last night, he was feeling much better today (more alert, not tired, and more willing to give this more time). He had a bad day yesterday, was in a bad mood, feeling down, and spent most of the day in bed; today was a much better day for him. I hope there are many more of them to come.

That is a really high OA and AHI. Once you get the leaks under control, you need to bump up the minimum pressure. I think that graphic might be something he would understand. The continuity of therapy (no mask removal) is impressive. That kind of data might make a case to go to his doctor for a prescription that could qualify him for a prescription and Medicare reimbursement for a new machine of his own, especially if you can find the point where his treatment drops AHI under 5. But don't lose this data as the starting point.

Lowering the maximum is unlikely to do anything because I don't think the machine ever went up there anyway so it is a moot point.
The minimum pressure is the most critical pressure in this situation.

Sleeprider wrote:That is a really high OA and AHI. Once you get the leaks under control, you need to bump up the minimum pressure. I think that graphic might be something he would understand. The continuity of therapy (no mask removal) is impressive. That kind of data might make a case to go to his doctor for a prescription that could qualify him for a prescription and Medicare reimbursement for a new machine of his own, especially if you can find the point where his treatment drops AHI under 5. But don't lose this data as the starting point.

Thanks again. Yep, the OA and AHI is too high for his therapy to be considered adequate, but I'm not too concerned about that at this point. I'm thrilled that he's getting used to the mask and machine so soon, and I'm really glad he's able and willing to wear it (and keep it on all night) already. We'll keep working on the leaks.

I'm not so inclined to raise the minimum pressure just yet, as he seems to spend some time there. I've lowered the high pressure to 14, as he didn't go much above 12 for the vast majority of time last night, and I don't want the pressure to top out because of leaks. And since many of the flagged events are happening when he's not experiencing LL, I think the data indicates that he really does have apnea that needs treatment. I'll be more confident about that assessment after I see his overnight oximetry data (which I hope will be sooner rather than later).

I do want to get him dialed in ASAP, but I'm still in a diagnostic mindset and am just happy that things are going as smoothly as they are. Some noobs have an immense amount of trouble when they begin, and I'm really glad that Dad's taken to it so easily. Just the fact that he kept the mask on all night amazes me and prompts me to smile big! (I suspect that means I need to get a life. LOL)

Pugsy wrote:Lowering the maximum is unlikely to do anything because I don't think the machine ever went up there anyway so it is a moot point.
The minimum pressure is the most critical pressure in this situation.

I agree, Brenda. I only brought the max down so the machine couldn't run away, pressure-wise. I also agree about the min setting being more important, but do you think I should raise the min so soon? I'm more inclined to leave the settings as they are for a few nights. Am I wrong?

BleepingBeauty wrote: I agree, Brenda. I only brought the max down so the machine couldn't run away, pressure-wise. I also agree about the min setting being more important, but do you think I should raise the min so soon? I'm more inclined to leave the settings as they are for a few nights. Am I wrong?

I don't see any evidence of the pressures wanting to run away because of the leaks at all...if they were wanting to go there they would have already done it but it won't hurt to reign in the maximum just in case. I see pressure increases in response to the OSA stuff.
Actually...I would raise the minimum sooner than later.
2 reasons mainly...it's fairly obvious it is needed and often when the minimum is more optimal the leaks are easier to manage because sometimes the pressures won't fluctuate so much...and even if the pressures still want to go to the 12 ish area...there's still less variations in pressure which can affect the seal.

Though to be honest I suspect that the bulk of the leak is primarily mask movement in general and not all that likely to be related to pressure...but just in case it is...limit the changes if we can.

But I would go slow... another 1 cm for 3 or 4 days and see what happens then maybe another 1 cm and see what happens.

Pugsy wrote:

BleepingBeauty wrote: I agree, Brenda. I only brought the max down so the machine couldn't run away, pressure-wise. I also agree about the min setting being more important, but do you think I should raise the min so soon? I'm more inclined to leave the settings as they are for a few nights. Am I wrong?

I don't see any evidence of the pressures wanting to run away because of the leaks at all...if they were wanting to go there they would have already done it but it won't hurt to reign in the maximum just in case. I see pressure increases in response to the OSA stuff.
Actually...I would raise the minimum sooner than later.
2 reasons mainly...it's fairly obvious it is needed and often when the minimum is more optimal the leaks are easier to manage because sometimes the pressures won't fluctuate so much...and even if the pressures still want to go to the 12 ish area...there's still less variations in pressure which can affect the seal.

Though to be honest I suspect that the bulk of the leak is primarily mask movement in general and not all that likely to be related to pressure...but just in case it is...limit the changes if we can.

But I would go slow... another 1 cm for 3 or 4 days and see what happens then maybe another 1 cm and see what happens.

You make valid points, and I think Dad will be fine with a small bump in the min pressure, so I'll do that tomorrow night. (He's already asleep, so I'll leave him alone tonight.) I'm sitting outside their room, and I don't hear the mask leaking at all; what I *do* hear is Pharrell Williams in my head.

Thanks for your expertise. It's been a long time since I've had to adjust pressure on a machine.

Well, I got into this one late, but a few thoughts.

Maybe a video of him sleeping would help convincing the skeptics. See if you can see when he was not breathing for how long. Have him watch the video and try to hold his breath while awake to keep track with the video. I guess you've sort of gotten over this hurdle.

At some point, it might be worth watching Craigslist for a reasonably priced PRS1 or ResMed machine with full data. It could help with the centrals question. It could also be quite useful to be able to see the duration of the events.

Don't get too discouraged over the AHI. It may be a lot better than he is without CPAP.

Don't forget the option of playing with the pressure range, maybe even including manual pressure or just reducing the top pressure.

Your comments about mom makes me think of the old joke. The old man said, "no, my wife doesn't suffer from stress, but she's a carrier."

archangle wrote:Well, I got into this one late, but a few thoughts.

Maybe a video of him sleeping would help convincing the skeptics. See if you can see when he was not breathing for how long. Have him watch the video and try to hold his breath while awake to keep track with the video. I guess you've sort of gotten over this hurdle.

Yep, I'm happy we're past that particular hurdle. Dad (and Mom) are convinced that the machine is a good thing. In fact, I asked Mom just this morning if she's okay with the sound of the machine (that it's not bothering her at all), and she nodded and said it's fine. Whew!

At some point, it might be worth watching Craigslist for a reasonably priced PRS1 or ResMed machine with full data. It could help with the centrals question. It could also be quite useful to be able to see the duration of the events.

That's a good idea. I can certainly do that while I'm here and scope out a suitable machine for him. I hope he doesn't have a central component to deal with, but I have no idea. As I said earlier in the thread, there's apnea on his side of the family, but I think I'm the only one who has CA.

Don't get too discouraged over the AHI. It may be a lot better than he is without CPAP.

Nope, I'm really not concerned with that at all right now. My immediate aim was to get him accustomed to wearing the mask (and to make sure my mother didn't continue to voice her earlier objections to the whole idea), and we've now met that goal. I'm already sure that the machine is making a positive difference, as Dad seems more alert and awake during the day. He still asked several times yesterday what day it was, but he answered himself each time with, "Today's Tuesday, right?" I didn't have to correct him even one time.

The forthcoming oximetry data will, I'm sure, be of great use and clue us all in re: just how bad his apnea is without any treatment.

Don't forget the option of playing with the pressure range, maybe even including manual pressure or just reducing the top pressure.

I lowered the max pressure last night down to 13.5, but his data this morning would indicate he barely went above 9. And since he spent most of the night at the min pressure of 8, I think I'll leave that setting alone for the next few nights (and not raise the min to 9, as I'd planned). Lots of large leak in the second half of the night, so I obviously can't rely on that data; but the first half looks really good to me (much more Hypopnea than OA, like me, and reasonable leak numbers). Here it is:



I'll see how the next few nights shake out. Could be that a manual pressure will work very well for him, and I'm certainly open to that possibility. I'm glad I kept this old APAP, though; thought about selling it (or giving it away) many times over the years, but something in the back of my mind kept nagging at me that it might come in handy for Dad someday. So glad that my decision to hang onto it was a good one.

Your comments about mom makes me think of the old joke. The old man said, "no, my wife doesn't suffer from stress, but she's a carrier."

That's SO perfect!

My luck with Dad kinda ran out last night, and I found the machine off this morning with the mask on the floor next to the bed. Nothing new for a noob, but I hope it doesn't keep happening.

I looked at the data, and he stopped the machine in the middle of the night. Otherwise, he did well with it, his AHI is the lowest I've seen so far, and he had minimal LL:



Does anyone see anything that needs attention?

I met and spoke briefly with Dad's GP yesterday (he has an appointment with her next Tuesday, but she was having a conference for her patients yesterday re: chronic conditions; Dad was tired and didn't feel up to attending and Mom didn't give a shit, so I went by myself) and was very impressed with her. I did tell her that I'm having Dad use the machine (see seemed familiar with apnea, but I'll see how knowledgeable she is about it next week), and she said she's more than willing to get the overnight oximetry done, so we'll take care of that next week at his appointment. After hearing her speak about how she runs her practice (and hearing the other patients in the room praise her care), I was really happy that she's my folks' doctor and feel confident that they're in good hands.

Dad was on his way to the bathroom late this morning and took a tumble onto the floor; he said afterwards that he felt light-headed and lost his balance. This isn't the first time he's fallen, but I hope it's the last. My head is kinda up my butt at the moment with concern for him, so if anyone has thoughts that I should be aware of re: his data or how I'm handling all this, please speak up. TIA

All of this caregiver stuff is so hard. Even if someone is attended at all times, it's hard to prevent a fall. I help take care of a lady who scares the dickens out of me due to her instability, and I know even if I'm there, the best I can do is try to lessen the impact. I am physically unable to catch and hold her. Fell and injured myself recently. It's nearly impossible in someone who is still mobile to 100% prevent a fall. I know you said you gave him a urinal before. Does he not want to use it or does he forget? Is your sleeping arrangement such that you'd hear a bell or alarm? Just wondering if you could rig something on the side of his bed that would only make noise if he tried to get up?

You're right about the mask removal being understandable for someone new to this. Not sure of his cognition. If he's forgetful, taping a bandaid across his cheek probably wouldn't help. If he's just doing it in his sleep and would know to stop if he was awake, it might help. Hang in there. Your parents are lucky to have you in their corner, and having a caring doctor is a huge bonus.

kteague wrote:All of this caregiver stuff is so hard. Even if someone is attended at all times, it's hard to prevent a fall. I help take care of a lady who scares the dickens out of me due to her instability, and I know even if I'm there, the best I can do is try to lessen the impact. I am physically unable to catch and hold her. Fell and injured myself recently. It's nearly impossible in someone who is still mobile to 100% prevent a fall. I know you said you gave him a urinal before. Does he not want to use it or does he forget? Is your sleeping arrangement such that you'd hear a bell or alarm? Just wondering if you could rig something on the side of his bed that would only make noise if he tried to get up?

You're right about the mask removal being understandable for someone new to this. Not sure of his cognition. If he's forgetful, taping a bandaid across his cheek probably wouldn't help. If he's just doing it in his sleep and would know to stop if he was awake, it might help. Hang in there. Your parents are lucky to have you in their corner, and having a caring doctor is a huge bonus.

Thanks, Kathy. I thought I'd be able to get Dad up from the floor if he fell while I was here, but it wasn't possible this morning. He's lost some weight recently, but I still couldn't lift him. Mom called a woman who works here in their complex to help me, and between us, we were able to get him upright again. Unfortunately, he's been on Plavix for awhile now, and he bleeds profusely with any little cut; when he fell this morning, he banged his elbow and his knee on the way to the floor, and I cleaned up what looked like a murder scene in the hallway.

Sorry to hear about your own fall. Hope you didn't do any serious damage. (I worry about that, myself.)

He has (and does) use the urinal, but he apparently felt well enough to walk to the bathroom this morning. It's not far from the bedroom, but the walk was obviously more than he could handle today. I know he hates feeling so vulnerable, and he gets annoyed with Mom when he gets up from the bed and she asks where he's going. It's a tough situation for a man who's been independent all his life. And I know he feels guilty for putting all this on Mom. (She sure doesn't help with her resentment; Dad is all too aware of it.)

As far as him removing the mask last night, I hope that's the only time it happens. I did put tape over his mouth last night, as I could hear him mouth-breathing before I went to bed. I didn't want to wake him, so I just placed the tape. He ripped that off last night, too, so I don't think taping the mask to his face will be of any use. It may be that he needs a mask other than the P10. I did bring a FFM with me, and I'll see if I can persuade him to try that. I thought the P10 was perfect because it's so minimal; but if he doesn't stop mouth-breathing, it won't work for him.

Re: being able to hear him if/when he gets up, there are aids I could look into. A baby monitor might be helpful, although I sleep like a log and don't think that would wake me. (The folks' bedroom is at the back of the house, and the guest room - where I'm sleeping - is in the front.) I know of another product that's something like a floor mat that you put next to the bed; I think it sounds an alarm when it's stepped on. That might be useful. Bottom line: He can stand next to the bed and use the urinal with little worry; it's when he feels able to walk but can't that there's a problem. I know he's fighting the feeling of helplessness, which prompts him to do things he shouldn't. Thanks for the suggestion. I'll see what I can come up with.

I'm really glad that his doctor is so involved and seemingly so caring. I'm sure I'll get a much more thorough impression of her next week. And I'm glad I'm here for them. (I think I'm right where I need to be, and they've each told me how grateful they are that I *am* here.) Like Bartles & Jaymes used to say, "Thanks for your support."