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nsmith555

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Greetings,
This is hard to write.
My mom (my PALS) has been declining rather rapidly over the last few weeks. Just this past week she's had a few days of substantial overall weakness and her breathlessness is getting worse. The night before last she evidently felt that she could not breathe at all.
She's not been very good about using her bipap - she's complained of claustraphobia.
I'm wondering if this is the beginnings of respiratory failure. I'm just trying to prepare myself. I am very scared that she will go through a lot of panic and anguish if she just can't breathe and I just really don't know what the process of respiratory failure entails.

I just need some insight.
Thanks in advance,
God Bless you all,
Nicki
 

Al

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Hi Nicki. Can you get her some nose pillows? They just fit in the nose and are not as claustrophobic.
AL.
 

CindyM

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Hi Nicki_ if her anxiety gets too bad please ask her doctor for something to calm her down. I would imagine that feeling as if you are not getting enough air must be very anxiety-producing! Good luck and let us know how it goes. Cindy
 

Lesley

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Is your MOm

enrolled in a hospice program, I would get that done ASAP, they will help with the fear and anxiety. I will keep you in my thoughts
 

hboyajian

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Hi, I'm sorry to hear of your mother's difficulties. It sounds like the use of the Bi-pap is becoming essential, so I hope the ideas others have offered can work for her. Respiratory failure can cause mental as well as physical decline, so it is important to do something about the problem quickly. If the carbon-dioxide level in her blood is rising due to inability to exhale completely, she may become lethargic and have trouble concentrating and communicating, and could then slip into unconsciousness (after some time if the problem is not ameliorated with the bi-pap). This is really serious. Though she is not likely to just suddenly stop breathing altogether, the carbon dioxide causes the blood to become increasingly acidic, and this in turn can eventually cause heart failure (again after a number of hours, not suddenly). I sincerely hope your mom is not to this impasse just yet, and that the breathing assistance can help her stay alert and with you for a while longer. Holly
 

nsmith555

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Thanks for all the helpful advice and support.
She is taking elavil, which is supposed to be somewhat of an antidepressant/antianxiety med, but that doesn't seem to help. She's got the nasal pillow mask, but doesn't like to wear the chin strap because of her excessive drooling.
I'm afraid she's somewhat stubborn as well as claustrophobic. I've pretty much laid out what is going to happen to her if she doesn't wear the bipap a lot, and told her I would stop bugging her about it if she knows all that and still declines to use it religiously.

I'm going through a lot of guilt right now - I feel like I should push her harder to wear the bipap, I feel like I should spend every available moment over there at their house, I basically feel like I should put my life on hold.

We haven't contacted hospice yet, I shall discuss that with my dad. I appreciate the thoughts and prayers.

God bless you,
Nicki
 

CindyM

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Hi Nicki. You have a lot on your plate right now! Don't be too hard on yourself, because if you run yourself ragged you will be no good to anybody. JMO, but I like the idea of giving your Mom all the information and letting her make up her own mind. If she's properly medicated for anxiety and still can't tolerate the BIPAP then at least she is making an informed decision. The only thing I wonder about is will she "hear" the facts better if you present a little a time over the next few days. And there is always the possibility that she may find on her own that she prefers the assistant of a BIPAP but she may need to some to that conclusion on her own. Please keep us informed. I hope this situation gets resolved soon! Regards, Cindy
 

midwestgirl

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Hi Nicki!
Please don't feel guilty - you are , and have been, a very supportive daughter. Although, it is hard - I know - I go through the same feelings with my mom - as I am sure most caregivers do. Have we done enough? What should we do? How hard should we push?

Ultimately, with your mom, as well as mine, we have to let them make their own decisions. We may not agree, or we may, but we have to support them and love them. When it comes time for my mother to need a bipap I know she will not want it, and will most likely refuse it - at least at first. My mom can also be very stubborn, but I think she just wants to feel she has control.

It may be a good idea to check in to hospice - they may be able to give her more to help with anxiety.

My prayers are with you and your mom!
 

helper

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When it came to anything new for my mother in law I would research on the internet and print off anything that i would find useful and bring it to her...she was totally against a peg even though she couldn't eat and was down to 90lbs. We let all the information soak in and then asked her how she felt..she did go in for the surgery and thats when the diagnosed of als came. The bipap she didn't want but tried it...one of us would sit with her while she used it a few minutes at a time but she just couldn't do it. We knew it could help and it was hard not to force her but it was her decision. I do wish that she would have used anti depressants before her last weeks but she was the type of person who was very wary of any type of medication. I do feel guilt still, wondering if i pushed harder if she would still be with us but have to tell myself it was her decision and she was ok with it...
So Nikki, maybe when something comes up you can give her the info and then talk about how she feels......when we first heard my mother in laws diagnosed I immediately mentioned her moving in with my husband and i and our three little ones...she was totally against it at first, feeling like she would be a burden...a little bit of time and showing her pics of the house we would buy and then bringing her for a walk through she realized we weren't doing it out of pity but out of love...

good luck,keep being supportive
Jodie
 

Angelgirl

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Nicki,
I could have written the same post as you did. The exact thing happened to my mom. Bless her heart, we tried the bi-pap and she told me to pack it away. It terrified her and I couldn't see forcing her to do something that caused her so much anxiety. We contacted Hospice and they were able to give us anti-anxiety and morphine meds to ease the discomfort. Mom peacefully passed away this past Saturday and she didn't appear to be in any pain. It actually progressed quickly. She basically just started to went to sleep and stopped breathing. I praise the Lord that all of us were able to be by her side. My heart goes out to everyone that is going thru this process. Just know in your heart that you are doing everything you can to make your loved one comfortable.
Sue
 

midwestgirl

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Sue,
I am so sorry to hear of your mom's passing, she sounded like a wonderful person. It has to be reassuring to know that she passed very peacefully and yu were with her. Dwell on your happy memories, you will be in my prayers.
 

CindyM

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Sue- what a thoughtrful and caring post form someone who has jost lost a loved one! My htoughts are with you today. I am sorry for your loss. Cindy
 

anne

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Hi Niki....You are not alone..My mother's breathing has taken a downhill slide. Completely out of breath on exertion so she has gone from being extremely mobile to being able to just walk from her chair to the bathroom and back. It is really sad. She was looking forward to doing her gardening this spring and summer and unfortunately under the circumstance not able to do it. Her breathing gets pretty loud and of course there is problems with the phelgm. Actually we had to call 911 on Monday night and she was rushed to the hospital. My mom does not like to use the bipap machine for the same reasons as your mother. However, this Friday she will be fitted for a different mask. I will certainly keep you informed on this. I have stepped away from the forum due to the fact that I need to wear alot of different hats. I have alot of different responsibilities and it gets harder and harder. There isn't much time for the computer.

Take care. Anne
 

anne

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Sue... I am so sorry to have read about the passing of your dear mother. My thoughts and prayers are with you. Anne
 
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