My mom hates the bi pap

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mndireland

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I dont really know what to do, my mom came home from hospital 2 weeks ago with a bi pap machine, she hates it! If i can get it on her for an hour or 2 a day its a bonus. She moans about it and then makes up an excuse to take it off like needs a drink or needs the toilet etc. It is a big mask and I am waiting on the doctor to come back from holidays to see if they can change the mask maybe to something more comfortable. 2 days ago she said she wasnt putting it on again and she didnt care what happened, i told her she could die (thinking it would scare her) but her reply was I dont care anymore. But later that evening she was really gasping for breath and asked me to put it on, which i thought was a miracle and she had realised she needs it, but since then we have the same battles to get it on each day. I feel like the mother and her the daughter as I have to promise her treats to get it on, like going shopping or something?
Also she wont wear it at night as she tosses so much and it comes off, and is very uncomfortable. I really cant see any difference in her and she is still out of breath all of the time, cannot walk around the house without losing her breath. Does this really work or am i forcing her to use it for no reason? The docs say she should be on it 5 or 6 hours a day but so far this hasnt happened, will it make a huge difference if i force her to do it? I dont want to upset her either and really thought she would come round to it herself. Her fvc was 40% when she first got it, is it too late for bipap? I read that once its in the early 30's this signals the end? How true is this? Does anybody know?

Really scared....
 

sisgldnhr

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bi-pap

The BiPap was very hard for my husband to adjust to. It took quite awhile until he could wear it thru the night. He has a constant sore on his nose from it that just won't heal. I also asked the Dr. at our last appt. about not noticing a difference when he wears it..... he told us that you won't 'see' a difference. It will take some time to get used to. My husband now wears his all night and puts it on periodically thru out the day.

Sis
 

gbrown

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There are several options for using the BiPap. I did not like the full face mask as I have a beard and it would not seal properly, so I had them send me a nasal mask that just fits into the nostrils. I like it much better and use it for 8 to 10 hours a day with no problems. It has 3 different size nasal appliances so there isn't a problem getting one to fit.

Talk to your respiratory therapist about the problem and let them give you suggestions. It does help.
Good luck,
Gordon
 

mndireland

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Thanks guys,
Gordon Im just wondering do you breathe all of the time through your nose? My mom sleeps with her mouth open and Im wondering did they notice this when they brought her in to give her the bi pap and thats why we were not offered the nasal mask? She doesnt really breathe through her nose at all?
I thought that once using the bi pap you will feel rested and with more energy, she doesnt feel this, is this normal?
 

joelc

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Quick answer is YES, it does work and really helps once you get used to it and can use it all night. I had a horrible time getting used to it but once I did it was a life saver. I had to use the full face mask because of breathing through my mouth. I tried to find a post I did over a year ago where I explained the stuggles I had trying to get used to the bipap burI could not find it. Suffice to say I hated it too and really fought to get used to it, but I finally did and things got a lot better! Don't give up it will get better.
 

joelc

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I found the post and reposting it below;

I feel for you.....but it does get better!

I don't have any miracle cures for you, but try to relax and ignore it to the best of your ability. I had exactly the same problem! I tried it one night and just about panicked so I ripped it off and forgot about it for the next several weeks. But, my headaches were becoming more severe so I knew I would either have to get used to a bipap or my time would be up real soon. Since I was not ready to die yet.....still have too much living to do! I knew I would somehow have to get past my panic and use it. It was one of the harder things I have done! Some people don't have any problems - I did.

I had a good long talk with myself and then thought - if others can do this then so can I!
I put the mask on and laid quietly on my left side and concentrated on other things. I have a very strong mind, so I forced myself to RELAX. After awhile the bipap synchronizes with your breathing pattern and gets more comfortable. Everytime I put it on it takes a few minutes before it perceives my breathing pattern and stops fighting me. It also took several nights to get the settings so they were comfortable, your RT will work with you on this.

I was also a mouth breather because of sinus problems since 13. So I got a face mask - tried several before I found one I liked. It only took 2 nights to get used to it once I stopped trying to fight it. Now I cannot understand why I fought it so hard at first. It is a LIFE SAVER! I can now get a good nights sleep and wake up rested, this has not happened in over 7 or 8 years.

Try using it a bit during the day just to get used to it. Lay down for an afternoon rest and put it on. Have a good talk with yourself......YOU CAN DO THIS - I DID.
Once you get used to it life gets better as you will have more energy. My breathing was also better during the day, likely because my diaphragm got some rest while I was using the bipap.

I can totally relate to what you are saying, but please relax and convince yourself you can do this - because you can!

You can also ask your doctor for a mild sedative you can use at night.

Hope this will help you a bit......ask me anything and I will try to answer.
 

gbrown

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In answer to your question, yes, I do breathe through my nose when I sleep. It's like Joel says you have to train your mind to accept it. When I first started using it I only used it during the day when I was awake and still do some. After I got use to it I now use it at night with no problem, even though I do take it off when I wake up during the night.

Like Joel says it really helps to relax the lung muscles and gives them rest.
Cya,
Gordon
 

CindyM

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Thanks for the tip, Gordon. Lots of PALS say it helps to try it for a bit first, preferably during the evenings while watching TV, just until you get used to it.
 

KellyandKay

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Is it possible that the Bipap makes your Mom anxious? My wife's biggest anxiety was about choking. When we got her a Bipap, she had no strength in her hands and arms to remove the mask. Her fear was that she would start choking and be helpless. She also couldn't do a very good job of swallowing excess saliva that built up while the mask was on. She tried to get used to it, with me standing beside her all the time, but then gave up. She wouldn't even think about going to sleep with it on. This is just something to think about. According to a study I read about in 2005, about 1 in 3 PALS could not tolerate a Bipap. I hope you can work this out with your Mom. Bipaps do help.
 
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