Suggestions, please?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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BleepingBeauty
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Suggestions, please?

Post by BleepingBeauty » Fri Jan 30, 2015 7:24 am

Greetings from Florida, everyone. I live in AZ, but I'm here in FL for the long haul to take care of my parents. My brothers live up north, and there's no family close by that my folks can rely on. Dad (who's 85) is recovering slowly from a two-month stay in the hospital that started in September, and he is now showing signs of mild dementia (can't remember what day it is, can't follow an involved story line in a TV show, etc.). And Mom (who's 82 and no stranger to stress - mostly self-induced) has been dealing with shingles for the past couple of weeks. Her having to pick up the slack from Dad's bout of bad health put her over the edge, and shingles is the result. Thankfully (IMO, not hers), she's not dealing with a full-blown case of shingles; it's mostly affecting her dominant hand and arm, which sucks (she can't write, she can't cook very well, can't cut her food, etc.), but it's not the fiery/completely debilitating problem it usually is. It could be *much* worse, IMO. (But then, I'm the eternal optimist, and she's definitely a doom-and-gloom type.)

Anyway, back to the point of this post: I've suspected for years that Dad has apnea, but he's always refused to get tested. His brother was diagnosed at 84 and used a machine for the two years before he passed from a number of other (related?) health issues. My older brother and I have both used a machine for the last several years, and Mom has told me for a long time that Dad snorts and gasps in his sleep (which, of course, disturbs *her* sleep). Anyway, my being in AZ and them living here in FL prevented me from doing much about it - until now. *rubbing hands together*

When I was last here for a visit (in December), I had convinced my Dad to try the machine when I came back for this visit, just to see what the data revealed. So a few days before I was due to return this time, I shipped my spare APAP (an M Series) to the house. When I told them it was on the way, they both pooh-poohed the idea of Dad using it at all. (I'm sure Mom, who's usually quite negative about everything, convinced Dad that it was useless to try. She told me, "He's 85, he's not well, he has enough on his plate right now, and this is just one more thing to pile on." And she worried that the machine noise would keep *her* awake. He, unfortunately, was now agreeing with that mindset. GRRR.) I've got a battle on my hands...

LSS: I got him to use the machine yesterday afternoon (for about five hours). I had ordered the P10 the last time I was due for a mask, as I figured it was probably the easiest and least intrusive mask for him to try. (I brought a couple of spare older FFMs with me in case the P10 wasn't suitable for him and/or it became obvious that he mouth-breathed, but I really didn't enjoy the prospect of trying to get him to wear a bulky mask. I also brought a chinstrap.) Thankfully, the P10 wasn't at all intimidating, and he acquiesced. I uploaded the data late yesterday, and his AHI was 16. Granted, it's not totally accurate because he wasn't asleep for all that time (and he did mouth-breathe for some of the time), but at least he did try to use it and I did get some useful data. He's not ready or willing yet to use it at night, but even just the afternoon sessions will be good for him (not only for the potential benefit of the therapy, itself, but to get him used to wearing the mask). So my immediate goal is his daily (afternoon) use until I can convince him to also use it all night.

Does anyone have other suggestions for me to try - things I can say or do to make it easier for him to see the benefits of therapy? (My own very positive experience is obviously not enough.) My mother's the real fly in the ointment here, and she can (and too often does) wield her negative powers over my dad, but I'm telling myself to just ignore her objections, convince him that this is a positive thing that will help him recover, get stronger, and fight the dementia, and I do what I can to encourage him. My hope is that she'll eventually see that it's helping him, that it's not a hindrance to her own sleep, and that, as Dad gets better, she'll relax and chill out (which will absolutely help *her* get rid of the shingles). Maybe she'll even admit that she was wrong about the whole therapy thing? *pipedream, as Mom is never wrong!*

Sorry this post is so wordy, and thanks for reading and/or suggesting anything that might help me out with this. Dad's dementia isn't going to improve, but I'm hoping I can stem the tide of it worsening by making sure he's getting good sleep. (He keeps saying that he *does* sleep well, but he's going back to bed after breakfast most days...) I thought I slept well, too, before I was tested and diagnosed.

The data sure is eye-opening when someone's in denial, and I'm hoping his will make a solid impression on him - one that convinces him that he needs this therapy and makes him want to use the machine. I don't expect miracles in his recovery, but I know that he'll feel better when he starts to sleep better.

TIA
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Julie
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Re: Suggestions, please?

Post by Julie » Fri Jan 30, 2015 8:24 am

Hi, considering what he's been going through, would it be a good idea to work some of this out with his doctor, rather than just trying things on your own? You obviously know lots about OSA and the equipment of course, and have the family history, but I wonder if the MD wouldn't want to have some input, knowing his med history etc.

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Re: Suggestions, please?

Post by Pugsy » Fri Jan 30, 2015 9:11 am

Good to see you again Robin.

Do you happen to have an overnight recording pulse ox? AHI of 16 isn't horrible and we don't know how many were actually the real deal but we know some of them weren't real and probably awake stuff getting flagged.
How does the report look? Clusters of events during known awake time?

FWIW...I feel your pain. My brother has OSA and I proved it on my machine and I know he desats below 88% often because when he was in the hospital the alarm went off all night long but he refuses to do anything except take Flexeril at bedtime to help him sleep...the doctor and my brother are both idiots but I can't do anything about it..long story there.

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Re: Suggestions, please?

Post by palerider » Fri Jan 30, 2015 9:31 am

BleepingBeauty wrote: (I'm sure Mom, who's usually quite negative about everything, convinced Dad that it was useless to try. She told me, "He's 85, he's not well, he has enough on his plate right now, and this is just one more thing to pile on." And she worried that the machine noise would keep *her* awake. He, unfortunately, was now agreeing with that mindset. GRRR.)
you can always bring out the nuclear option and ask her, in front of him, why she wants him to die sooner, and have worse health until he does.

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Re: Suggestions, please?

Post by Madalot » Fri Jan 30, 2015 10:40 am

I was thinking along the same lines as Pugsy -- if you had/could get a recording pulse ox. That's what I did with my husband to get him at least *thinking* about his situation.

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BleepingBeauty
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Re: Suggestions, please?

Post by BleepingBeauty » Fri Jan 30, 2015 12:15 pm

Thanks for the replies so far. I appreciate your input.
Julie wrote:Hi, considering what he's been going through, would it be a good idea to work some of this out with his doctor, rather than just trying things on your own? You obviously know lots about OSA and the equipment of course, and have the family history, but I wonder if the MD wouldn't want to have some input, knowing his med history etc.
Thanks, Julie. I will speak with his GP about all this. From my own apnea experiences with doctors, I doubt she even suspects he has it. He's supposed to see her on Wednesday, and I'll take him to her office and clue her in about what I'm doing. Personally, I don't have faith in most docs when it comes to apnea (sleep docs, mainly, but all of them in general), so I expect not to hear much of anything knowledgeable from her on the subject, but I do think she needs to be apprised of the effort I'm making to get him going on the machine. And she might pleasantly surprise me.

She may suggest a sleep study (which neither of my parents will want, I suspect), but I hope she responds positively to the diagnostic and/or treatment use of the machine, deems it a good move, and gives me encouragement to continue. And if she does respond that way, it can't help but bolster the effort I'm putting forth in my dad's (and mom's) mind. Heaven help me if she disagrees with it for any reason. That'll just give Dad (and Mom, especially) more ammo with which to pooh-pooh the whole idea... Oy. I'm crossing fingers and toes!
Pugsy wrote:Good to see you again Robin.

Do you happen to have an overnight recording pulse ox? AHI of 16 isn't horrible and we don't know how many were actually the real deal but we know some of them weren't real and probably awake stuff getting flagged.
How does the report look? Clusters of events during known awake time?

FWIW...I feel your pain. My brother has OSA and I proved it on my machine and I know he desats below 88% often because when he was in the hospital the alarm went off all night long but he refuses to do anything except take Flexeril at bedtime to help him sleep...the doctor and my brother are both idiots but I can't do anything about it..long story there.
Hi, Brenda. It's really nice to see you, too.

I do have a recording pulse ox (at home in AZ, of course; the one apnea-related piece of equipment that I neglected to ship or pack - doh!). I didn't have much time between the last visit here and getting things taken care of at home in order to come back here for the long haul; unfortunately, that was the one thing I should have made sure was taken care of but neglected. Perhaps I can ask his GP to order an overnight pulse ox from a local DME for one or two nights and see what that indicates.

I set the machine wide open initially (from 4-20 cm). I've since narrowed it (starting at 8 for today). Here's his detailed data from yesterday:

Image

Image

He was in bed during the time this data was recorded, and I can't be sure when he was awake or actually asleep. I could hear the mask leaking at times and went in to help him adjust it, so I know much of this data is b.s. I just want him to get used to wearing the mask during the day (since he's still fighting me on wearing it to bed), so I was happy to know he was at least using it, and I didn't want to push my luck. I did show him the uploaded data late yesterday and tried to explain what everything meant, being sure to tell him that it's not quite accurate yet (with all the leaking) but that it does give me some indication that he probably needs the machine.

It's hard enough with someone like your brother (who's just negative but can understand the implications of not getting therapy; it's even harder with my dad and dementia.) But he's been cooperative so far, and I was able to convince him to try again today, so he's watching TV right now with the mask on. I just went it to check on him and see how he's doing, and he wanted to get under the covers and sleep a bit. I'm glad he has the mask on.
palerider wrote:
BleepingBeauty wrote: (I'm sure Mom, who's usually quite negative about everything, convinced Dad that it was useless to try. She told me, "He's 85, he's not well, he has enough on his plate right now, and this is just one more thing to pile on." And she worried that the machine noise would keep *her* awake. He, unfortunately, was now agreeing with that mindset. GRRR.)
you can always bring out the nuclear option and ask her, in front of him, why she wants him to die sooner, and have worse health until he does.
Believe it or not, my mother beat you (and me) to the punch already. She says stuff like her friends here who've lost husbands already "don't know how lucky they are" and that she'd "be happier dead so I wouldn't have to deal with all this crap." Believe me, Dad knows exactly how she feels, and it pains me to no end that he feels guilty for her state of mind. He not only has to fight the dementia and fight to recover from his other health issues, but he also has to live with her and her shitty negativity. (I'm *really* glad I'm here for him, if only to buffer and counter her attitude. I've always been close to my dad, and this current experience only bolsters that kinship. I do love my mother, simply because she *is* my mother and I know she loves me, but I don't like her much.)

She's not shy about her resentment that Dad's health has taken such a bad turn since September and that she's had to pick up the slack... I've always had a somewhat combative relationship with her, but she's now over-the-top mean towards him. I once commented (years ago) that she sounded just like my Nana (her mother, with whom she didn't get along), and she nearly tore me a new one and said she never wanted to hear that again. Big surprise. But it's very true; she *is* her mother. That pisses her off, and it pisses me and my dad off, too.
Madalot wrote:I was thinking along the same lines as Pugsy -- if you had/could get a recording pulse ox. That's what I did with my husband to get him at least *thinking* about his situation.
Yep, I'm going to ask his GP about getting one from a DME to see what it says. I think Dad will be okay with wearing that on his finger long before he agrees to wear the mask all night. Hopefully, the results will indicate his need for the therapy and both he and my mother will see the light. Thanks, Maddie.
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Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy. ;))

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Re: Suggestions, please?

Post by BleepingBeauty » Fri Jan 30, 2015 12:19 pm

Just realized that I misstated something in my OP. Dad's obstructive index yesterday was 16, but the AHI was closer to 20. Still not terrible (and still not totally accurate). Just wanted to correct the record.

Me, anal? Well, I never!
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Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy. ;))

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Re: Suggestions, please?

Post by Wulfman... » Fri Jan 30, 2015 12:25 pm

I don't know if this has been asked or answered, but in what position does he sleep?


Den

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Re: Suggestions, please?

Post by Pugsy » Fri Jan 30, 2015 12:34 pm

That report is very similar to my brothers.
While we can probably explain away a few as "awake" stuff, I doubt we can explain away enough of them. The pressure wouldn't increase like that if a person was awake.

I wish there was some miracle statement that would work like the proverbial 2 X 4 to get people to come around and accept the diagnosis and treatment but I haven't found one. Been there and done that with my own brother.

I would for sure try to follow up with an overnight pulse ox report and yes...maybe get the doctor to order one since your unit isn't handy. I would at least want to know for sure what the oxygen was doing in this situation. Hopefully the desats won't be horrible in that regard.
That way you will have the best ammo to use in your attempt to get your dad to accept things...plus you will know for sure if the desats are life threatening.

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Re: Suggestions, please?

Post by BleepingBeauty » Fri Jan 30, 2015 1:36 pm

Wulfman... wrote:I don't know if this has been asked or answered, but in what position does he sleep?


Den

.
Hi, Den. No, it wasn't asked, and I never (stupidly) offered the info. Dad mostly sleeps on his right side, and only occasionally on his left. He hurt his left shoulder when he took a tumble in the rehab facility, so he tends to stay off it now (if he ever favored it before, and I don't think he did). The important fact here is that he's not a back-sleeper like me.
Pugsy wrote:That report is very similar to my brothers.
While we can probably explain away a few as "awake" stuff, I doubt we can explain away enough of them. The pressure wouldn't increase like that if a person was awake.

I wish there was some miracle statement that would work like the proverbial 2 X 4 to get people to come around and accept the diagnosis and treatment but I haven't found one. Been there and done that with my own brother.

I would for sure try to follow up with an overnight pulse ox report and yes...maybe get the doctor to order one since your unit isn't handy. I would at least want to know for sure what the oxygen was doing in this situation. Hopefully the desats won't be horrible in that regard.
That way you will have the best ammo to use in your attempt to get your dad to accept things...plus you will know for sure if the desats are life threatening.
Thanks, Pugsy. That was my take-away of the data, too (re: the pressure increases). He didn't spend any time, really, at the low end of the settings, and I know he wasn't mouth-breathing for much of the therapy time.

Some people just prefer denial, plain and simple, and there's not much any of us can do to change that. I'm glad Dad's at least willing to go along (so far, anyway), especially in the face of my mother's indifference/hostility, even if it takes some persistence on my part to get him to wear the mask. He knows I'm trying to help.

~~~~~~~~~~~~~~~~~~~~

Thanks to all who've responded thus far (and to all the silent readers). It helps to know that this awesome community is behind me.
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Re: Suggestions, please?

Post by Wulfman... » Fri Jan 30, 2015 1:50 pm

BleepingBeauty wrote:
Wulfman... wrote:I don't know if this has been asked or answered, but in what position does he sleep?


Den

.
Hi, Den. No, it wasn't asked, and I never (stupidly) offered the info. Dad mostly sleeps on his right side, and only occasionally on his left. He hurt his left shoulder when he took a tumble in the rehab facility, so he tends to stay off it now (if he ever favored it before, and I don't think he did). The important fact here is that he's not a back-sleeper like me.

Hi BB.

If you've formulated a plan (or trying to) for his evaluation, what's your next move?
Can you get him to use it again?
Since snores seem to be driving the pressure upwards, and in some places after it reaches certain levels it lessens (including the OAs), I would think gradually moving the minimum pressure upwards may show some meaningful therapy settings.


Den

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Re: Suggestions, please?

Post by BleepingBeauty » Fri Jan 30, 2015 7:30 pm

Wulfman... wrote: Hi BB.

If you've formulated a plan (or trying to) for his evaluation, what's your next move?
Can you get him to use it again?
Since snores seem to be driving the pressure upwards, and in some places after it reaches certain levels it lessens (including the OAs), I would think gradually moving the minimum pressure upwards may show some meaningful therapy settings.


Den

.
The only "plan" I have right now is to keep encouraging Dad to use the machine as often as I can, with hopes that I can eventually get him to use it at night to get a more solid chunk of reliable data (with no doubt that he's asleep while the machine is recording). At the moment, the next step is to get his doc on board to order the recording pulse ox for a night or two and see what that tells us. I'm hoping I can talk to her about it this Wednesday, when I'll take Dad over to her office.

He only used the machine for about 2.5 hours this afternoon, but I think he did sleep with it some (how much is a mystery to him and to me); the data looks much better than it did yesterday. I changed the pressures to 8-20, he never went above 9 while he was using it and, aside from the first 50 minutes or so, his leak was under much better control. I find it interesting that most of his events were recorded as hypops (which mirrors my own data). Here's today's graph:

Image

He may not have slept at all today and could have just been resting/breathing comfortably with the mask on. He doesn't know what day it is, so my asking if he slept is kinda useless. He has his eyes closed most of the time, but he could just be relaxed. I won't have any reliable data unless/until I can get him to use the machine at night, when I *know* he's sleeping.

In the meantime, I'll just keep on keepin' on about him using it during the day (if only so his brain gets used to the idea of the alien on his face so he won't fight the mask if/when he uses it at night).

Thanks, Den.
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Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy. ;))

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Re: Suggestions, please?

Post by Wulfman... » Fri Jan 30, 2015 7:34 pm

Sounds like a good plan to me.
Yes, much improved stats with the "nap" data.

Good luck and hang in there.


Den

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Re: Suggestions, please?

Post by Sleeprider » Fri Jan 30, 2015 7:50 pm

What great progress! You can just see where he relaxes into the therapy and has a quiet couple hours. Well done. I wish I had done this for my dad who died of chronic heart failure. He was remarkably lucid, but his wife put him in a memory care unit. Supplemental oxygen couldn't overcome the apnea, and I was 1500 miles away and couldn't do much to help.

I hope you continue to do what you can to help your dad. Hopefully he will recognize the greater comfort, and this will help him. No fun to watch our parents go through this slow decline.

Tom

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Re: Suggestions, please?

Post by kteague » Fri Jan 30, 2015 9:34 pm

Can't offer much in the way of suggestions, just wanted to say Hi and acknowledge how difficult it is to be the caregiver - even more so when family dynamics are such as you describe. Hope things fall into place without too much opposition.

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