He won't let me put the BiPap on!

[brooksea]

It ain't easy! I explained to him that he could no longer help me get it situated on his face and therefore it would be more difficult to place. He got so pissed! He thinks I'M being the jerk! He refused to wear it! I tried to explain why he should, but he was such an ass, I gave up. He used to use the BiPap all the time, but hasn't recently.

I can tell he is winding down with this disease. If he won't use the equipment, then what can I say...

 

[smwelder]

What has gotten him to behave this way?

 

[brooksea]

I would say that "losing control" is probably the main factor in his behaving this way.

 

[BarryG]

CJ, I know that you two always have adventures often because he is so stubborn but refusing to wear the bipap is not good. I hope you can convince him, good luck.

 

[LornaDoone]

I know someone that resists the bipap on occasion. Whenever he gets really down and just wants this to be over, he refuses food and bipap. It's quite sad. I dont make him. He's lived with the disease for about 4 years now and he says he's done. But, then changes his mind. Makes ya sad eh?

 

[jwife]

I don't know your husband, but knowing mine, two things come to mind. 1. Is this his way of saying that he has had enough? 2. My husband's neurologist just told me that one of the things that I might see in my husband's behavior is the stubborn refusal to do something or the insistence that something be done a particular way. We both think that he may have the dementia that is often associated with ALS.
Regardless of the why, I know that this must be so hard for you. Taking care of them is a full time job and trying to do what is in their best interest when they are not wanting to cooperate almost makes you want to strangle them yourself. Been there and thought that myself once or twice.
Good Luck and hope he changes his mind.
Janis

 

[LizT]

Cj- I think all you can do is respect his wishes, even if they really stink... easier said than done, i know.
but you can hope that when it gets bad enough, he will agree to use the bipap again.
best of luck to you guys.

 

[10steps]

the bipap sits in a container in the corner. My husband won't use it. He tried it for maybe 2-3 weeks and says it bothers him too much. the neuologist looked at me during our last appointment and told me it isn't uncommon for an ALS patient to pass away during the night and to be ready for anything. I guess if he made any effort or showed any interest I would push more to use it. He jsut doesn't want it and I'm not sure I can ask him to suffer more/longer.

 

[brooksea]

Sorry about your husband, 10steps.

Mine is using the Bipap tonight and I hope he will keep it on all night.

 

[jwife]

10steps, I think you are right. I don't think it is our decision but theirs to make. The neuro explained the reasoning behind the bi-pap to my husband just this morning and told him that respiratory failure is brought on by a build up of carbon dioxide rather than a lack of oxygen. When he went to bed tonight, I asked about the bi-pap and was told no he didn't think he wanted to do that tonight. I just said, you know that you are making a decision by not using it. It may change when his breathing gets worse, but right now that is what he wants. I feel the same way as you. Who am I to ask him to suffer more?
Good Luck!

 

[shelly2612]

Brooksea, my husband, Eddie also went thru a stage where he didn't wear the bi-pap for approx 6 weeks, one morning at approx 3:45 am I sensed that his breathing had changed. I turned on our bedroom light and found him asleep, upon trying to wake him I realized that he wasn't only asleep but comatose, I put the bi-pap on him and called hospice and the family in. Hospice came and stayed for a few hours and told me that this was the beginning of the end, as the day went on I continously wiped his face with a warm washcloth because he was sweating so badly, at about 2pm he suddenly woke in a panic, thinking we were going to let him die. Later it was explained to us that he was in a carbon dioxide coma. If I had not put the bi-pap on him he would have died from to much of the CO2. Needless to say after that episode he wore the bi-pap EVERY night until the very end.

 

[shelly2612]

Oops, I said all that to say this, in the end it is entirely up to him, sometimes we have to just bite our tongue and let them learn on their own.

 

[Miss]

My husband does the same thing, but always calls me back to put it on. It is just a way of trying to be in control of SOMETHING, ANYTHING ! ! ! Frustrating when I'm already tired and ready to go to sleep.

 

[Madison1943]

Man, reading these posts makes me really glad that I'm alone in my house. I have caregivers during the day at odd hours, but nobody is going to tell me to use a bipap, feeding tube or get a vent. I would love to die during the night while I'm asleep. That would be infinitely better than going through the "palliative sedation" hospice is planning for me. Carbon dioxide buildup would be such a relief. If it weren't so bloody painful I might soldier on, but for who? It's just too much suffering for a sane person. I take liquid morphine every 2 hours, 2 vicodin 10s 4 times a day and baclofen and neurontin. Still the pain is only bearable if I am perfectly still. Please remember it is your husband or wife or mother who is dealing with this disease. Cut them some slack.
Carol

 

[heymom05]

I am so sorry to hear about this, sorta makes me scared for when Kevin is on a bi-pap. Of course, I may just have to whack him upside his head and remind him he is an adult not a 2 year old child....wait, never mind he is a man...same thing.