Doctors and nurses aren't a help so I came here.

I'm at the end of my rope and I don't know what to do to help my father so any help would be wonderful.

My father has a pretty bad case of sleep apnea. It landed him in a hospital recently due to carbon dioxide poisoning. He went into respiratory distress and had to stay in the hopsital for almost 2 weeks.

The lack of oxygen has left him confused and it's complicated by his dementia(which thank goodness is in a mild stage right now but it's still a complication nonetheless).

At the hospital they allowed him to not wear his BiPAP mask at night. The thing is that he doesn't know he's taking it off. He has a kneejerk reaction while he's asleep and yanks it off. He's now home and does the same thing with the CPAP. He says he feels like the CPAP is taking his breath. I've never used it so I don't quite understand what he's going through. He knows he has to wear it at night at least but he still has that kneejerk reaction of ripping it off and he doesn't know he's doing it.

I guess my main questions are has anyone had this problem and are there methods that will keep him from ripping it off at night? (I joked with him and said I was going to put oven mitts on his hands but the idea doesn't sound half bad now). We're just all clueless and the nurses and doctors are complacent with him taking off the mask and leaving it off even though that's what landed him in the hospital in the first place.

Kelce, what's the full name of your father's machine? The full name will be on the top of the machine. Please tell us every word that you see on TOP of the machine (other than any word that might be on a button.)

Your father is lucky to have you helping him. And lucky that you found your way to this message board.

Hey, about the oven mitts... you're thinking like a good "Lab Rat" (that's a compliment, btw! )

Oven mitts have been tried. Probably have worked for some, but even with them slowing a person down, a mask can still be shoved off by a really determined mask-taker-off'er-in-their-sleep'er.

viewtopic.php?t=1484

Other than just the discomfort of the thing on the face, the biggest reason for someone feeling like they are distressed by the mask is that the machine is set too low. CPAP can be adjusted normally between 4 and 20 cm of water column equivalent pressure. Most people who have tried very low pressures have felt they can't breathe. Perhaps this is what your father is feeling. If you can get us information on what equipment he has, what the settings are(once we know what the equipment is we can guide you through determination of the settings) and so on. The people on here love to help so let us get at it.

TerryB

Kelce02 wrote:I'm at the end of my rope and I don't know what to do to help my father so any help would be wonderful.

My father has a pretty bad case of sleep apnea. It landed him in a hospital recently due to carbon dioxide poisoning. He went into respiratory distress and had to stay in the hopsital for almost 2 weeks.

The lack of oxygen has left him confused and it's complicated by his dementia(which thank goodness is in a mild stage right now but it's still a complication nonetheless).

At the hospital they allowed him to not wear his BiPAP mask at night. The thing is that he doesn't know he's taking it off. He has a kneejerk reaction while he's asleep and yanks it off. He's now home and does the same thing with the CPAP. He says he feels like the CPAP is taking his breath. I've never used it so I don't quite understand what he's going through. He knows he has to wear it at night at least but he still has that kneejerk reaction of ripping it off and he doesn't know he's doing it.

I guess my main questions are has anyone had this problem and are there methods that will keep him from ripping it off at night? (I joked with him and said I was going to put oven mitts on his hands but the idea doesn't sound half bad now). We're just all clueless and the nurses and doctors are complacent with him taking off the mask and leaving it off even though that's what landed him in the hospital in the first place.

Welcome to the forum.

Sounds like another case of the "medical professionals" falling down on the job.

Was the hospitalization from his carbon dioxide poisoning a result of him pulling his mask off at night?

Does he use a CPAP or Bi-PAP machine? (sounds like Bi-PAP but wanted to make sure)
If you could look at the machine and tell us exactly what make/model it is, that might be helpful. Also, if you know his pressure setting(s) in the machine.

Does he have a humidifier (tank with water) with the machine?

How long has he been using the machine? Recently? Long time?

What kind (make/model) of mask does he use?

Do the filters in his machine get cleaned/changed fairly regularly?

Your "joke" about the oven mitts is close to some of my recommendations for folks who rip their masks off at night. I've suggested wearing heavy cotton socks on their hands so it won't be as easy to do.

Is the doctor who did his sleep study nearby? And, what about the place where he got his equipment?

I know that's a lot of questions.......but it helps to have more info.

Best wishes,

Den

Thank you guys so much. People were losing hope on the situation and they were ready to send him to a nursing home. He told me and my mom he'd rather die than be in a nursing home. His only problem is that he takes it off at night. Seems like a simple solution and if it can be figured out then he can stay at home no problem.

I will look at that link that you showed me for sure.

Unfortunately I'm 5 hours away so it's made it that much harder to get things figured out for him.

I will ask my mother to look at the machine when she gets home from work to get the name off of it and report back to you guys?

If the pressure is causing some of the discomfort is it something that we could easily change or would a tech have to come out?

Welcome to the forum.

Sounds like another case of the "medical professionals" falling down on the job.

Was the hospitalization from his carbon dioxide poisoning a result of him pulling his mask off at night? He wasn't wearing his mask at all. He refused. I knew it was important and nagged him for years to wear it but I don't think he quite understood how important it was until he landed in a hospital

Does he use a CPAP or Bi-PAP machine? (sounds like Bi-PAP but wanted to make sure)
If you could look at the machine and tell us exactly what make/model it is, that might be helpful. Also, if you know his pressure setting(s) in the machine. He uses CPAP at home. They had him on Bi-Pap at the hospital. I will get the model information as soon as possible. Unfortunately i'm hours away so I have to wait until someone can look at it

Does he have a humidifier (tank with water) with the machine? Yes. My mother put water in it last night

How long has he been using the machine? Recently? Long time? He was given the machine back in 2005 but he never used in consistently. He gave up on it.

Do the filters in his machine get cleaned/changed fairly regularly? It really hasn't been used so I don't know how dirty they are but I will get my mom to check them

Your "joke" about the oven mitts is close to some of my recommendations for folks who rip their masks off at night. I've suggested wearing heavy cotton socks on their hands so it won't be as easy to do.

Is the doctor who did his sleep study nearby? And, what about the place where he got his equipment? Both are far from me but close to him

I know that's a lot of questions.......but it helps to have more info.

I definitely don't mind the questions. I know it'll help you guys help me and thus help my father. You've asked me more questions than the doctors. I really appreciate it. Thanks for the best wishes

If he can be reasoned with, let him know that succeeding at this may be the very thing that keeps him out of a nursing home. And that there's a good chance he'll regain a degree of mental clarity if some of his problems are caused by sleep deprivation. Maybe he's so out of it when he takes it off he's barely aware.

Some machines have a "mask off" alarm. Don't know if his does. While one may not be loud enough to wake him, to increase the volume, maybe a baby monitor sitting beside the machine with the listening monitor volume cranked up and sitting near his head might make the alarm more apparent. If it aggravates him enough, he may avoid taking it off to avoid being awakened. Just a thought.

Hope your family is able to help him. His doctor should be guiding you on this, but I commend you on doing what you have to do to help your dad.

Kathy

Once we have the information on the equipment we will be able to direct your efforts to fix the problem even to include adjustments to pressure if required. The range of knowledge in the people here is awesome so help for you to help your dad will be forthcoming.

TerryB

Thank you Kathy!

Terry: I can really tell. I've already bragged about you guys. I showed my sister the messages and she very pleased with the amount of outreach. The whole family appreciates it.

I will probably have the model number in about 4-5 hours. My mother should be home by then to check it out for me.

Last night my dad said his mask wasn't right because it didn't have the menthol smell. Someone told me that we can maybe but menthol pads that go in waterless vaporizers into the filter so I'm going to tell my mom about that too. Is that common?

Hi Kelce02, and welcome.

Regarding the menthol pads, if you're talking about putting them in a humidifier that's attached to his machine, don't. You're not supposed to put anything in the humidifier but distilled water. And I don't believe anything but the filers that come with the machine should go in the filter slot(s). Please, folks, correct me if I'm wrong.

As someone else said, we love to help, so bring it on!

Pam

Kelce02 wrote:I will probably have the model number in about 4-5 hours. My mother should be home by then to check it out for me.

Don't ask her to look for a model number. Ask her to look at the top surface of the machine and write down every word she sees on top...that will be the full name of the machine, including brand and model name. If there's a blue sticker on top that says C-Flex, or a green sticker that says Bi-Flex, tell us what the sticker says, too. There may not be a sticker.

Kelce.......

What I'm going to say may not make you happy.....but, it may make it a little easier for you to face what I suspect is coming.

Both of my parents died one year ago...within 11-days of each other. One had full blown Alzheimers.....and the other had dementia.......whether it was Alzheimers or not we could never tell. Both were in nursing homes.

What I observed may help you. I suspect that the sub-conscious brain takes over while we're asleep. This gives the conscious mind time to regroup and refresh itself.

As both of my parents faded in their ability to reason, I observed that they seemed to rely on their sub-conscious mind while they were awake.....almost like they were dreaming....but, awake.

I observed that "reasoning" is made up of two factors: The ability to remember....and the ability to choose. If a person can't remember, he can't keep the alternatives straight enough in his mind....so that he can make the best selection.

I suspect that you father can no longer remember well enough to choose.....and that may mean that he may no longer be able to cope with CPAP therapy. I suspect that his sub-conscious is getting rid of the mask at night....while it (his sub-conscious) is in charge.....and there won't be much you can do to convince his sub-conscious that the mask needs to stay on his head.

As both of my parents moved toward death, I found that I could no longer train them to do anything. As their memory systems collapsed, they could no longer learn.

Because I have been through what I think you are facing, I want you to know that you have my full compassion.......and all I can do is to help you realize that there just may not be much that you can do. There is only so much help that you can give.....and you must be proud of your attempts to help.....and not guilty about your inability to push back the inevitable move toward death.

Birth, life, and death are all natural processes. Make your father as comfortable as possible.......but don't beat yourself up for not being able to do more. He's in the twilight of his life and your purpose is to carry his genes into the future.

All of us here will do what we can to help you.

Gerald

I got the info. On the top it said Lincare. Then she said it said C-Flex, feel the difference.

There was a heat button, on/off button, and a ramp button. She also said on the top it said Remstar Auto. She said nothing else was on the top of it.


Gerald: Yeah I've been coping with what dementia means for him. He has Binswanger's. Most patients die within 5 years of diagnosis due to stroke. It is degenerative but I never got a good read on how bad it gets before the stroke occurs. It's hard to find info on it because it's a rare disease. Once again the doctor's haven't been much of a help. They didn't even give us the name of the disease until 4 months after diagnosis.

I talked to him just a bit ago. He was upset because my mom "scolded him" for not wearing it while he was asleep during the day.

The thing is sometimes he does great. When he was in the hospital I saw him go about 6 hours without even messing with his bipap mask. I feel he can maybe get passed it. I haven't lost hope yet. he said he's trying and he said he can't do it all right over night. He's right about that.

I wonder if his starting pressure is high enough to enable him to breathe without feeling suffocated?

If it is set to 4 or at a really low pressure he may feel like he isn't getting enough air.

Anyway of checking it or does your mom know at what pressure it is set at?

It probably isn't simply an issue of the nurses not making your Father wear his mask. I don't know how good a job they were doing with his care-so I won't necessarily defend them. If he refused to use the XPAP they have few choices. If he is considered competent he has a choice and staff cannot force him to do what he does not want to do. They may not oversedate him and they may not tie his hands. They are not able to stay at the bedside to make sure he keeps the mask on. Especially at night many people become combative when nursing staff try to put the masks back on. Early dementia is worse at night-it is called sundowning.
Now that he is home;
I'd suggest getting a home care referral for an RT to come to the home and check his equipment and the fit of the mask. Explain that it could help him stay out of a nursing home; maybe put a little menthol rub on his upper lip-below his nose.If he wants to use it but keeps taking it off once asleep-is there someone to stay with him at night to replace it? Even if he takes the mask off intentionally it really doesn't make much difference. Home care nurses may have some suggestions to improve his breathing without using a PAP device. For example a hospital bed with the head elevated could help. If he needs one-on-one/continuous supervision to keep the mask on that will be up to family to provide as Medicare home care agencies do not provide that kind of help. You can hire people to come in at night.
I don't know what other conditions your Father has or how good his basic health is. Two weeks in the hospital suggests he has more than sleep apnea causing the CO2 imbalance. Has he used PAP for long? If the doctor has not fully informed you-ask more questions. I'd also suggest that your entire family have a discussion about whether you are all in agreement about forcing him to use his PAP machine or not, and what kind of help each person can provide. While he is still competent get him to sign papers allowing someone to make health care decisions for him when he is very ill. If you get a home care referral they have social workers who can help your family sort out these issues. You can call a home care agency like Visiting Nurses yourself or ask the doctor for a referral. If the doc says "oh your Father doesn't need that"-tell the doc you want the referral-a nurse should come out to the home and evaluate your Father and let you know if he qualifies for Medicare Home Care and what kind of help you can expect.