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texgrl

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i'm wondering if anyone has any experience with this. my mother in law was diagnosed with ALS in August of 2007. She has progressed to the point that she no longer is able to walk or stand, and has almost no use of her arms.

she is having frequent bouts with crying and yesterday was crying and asking her husband why he was letting her live this way. she wanted to take all of her pills and even went so far as to ask him to get a gun.

her breathing is pretty shallow these days............

I am at a loss as to what to do. In my other posts, i've mentioned that my mother in law has refused to go to the clinic, didn't want a bi-pap, definitely didn't want a feeding tube, basically she has refused everything but medication at this point.

we are waiting on a call from the doctor today, but i thought i would see if anyone has experienced this here. is this a cognitive problem or is this CO 2 levels getting high or what? both my husband and i and her husband are a wreck over what is going on.
 

ZenArcher

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My first thought would be to get in touch with the clinic in your area and discuss the situation. Perhaps between the nurse coordinator, neurologist and psychologist they can get her a prescription for some anti-depressants. If she is already on anti-depressants perhaps they can offer other assistance.

The other thing to look at is this may be part of the normal grieving process. Depression is the last stage before Acceptance. That doesn't mean let it go untreated its just something to consider. Whatever the outcome I wish you and your family the best.
 

Icanmanz

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Hi txgrl! I am so sorry to hear what you are experiencing with your mother in law. I wish there was a way as to where I could come up with some ideas, but at this point, I am afraid I can't. I am so sorry! It must be hard on you guys. Let me ask you txgrl, is this type of behavior something that you would expect from her, as the way she was before she got sick? I don't even know if I am making any sense or not. Can she still speak a little? Has she been using the voice machine? This disease is so bad, my friend. It is so bad, that I would not wish it on my worst enemy, if I had one. This disease affects people in so many different ways. Some are a little calmer than others. My son, I miss him so, my baby he was as calm as a little lamb, bless him. Even at the end, he remained calm, just waiting, waiting, waiting. God only knows what was going through his mind. How I hate this damn disease! God bless each one of you. Oh, before I forget, has she been attending the support group meetings? Keep us posted. How has Paul been going in the middle of all this? Bless him, too.

Irma
 

Icanmanz

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How has Paul been doing, is what I meant to ask! Sorry!

Irma
 

Marjorie R. Wilcox

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toward the MIL who wants to die

So sorry to hear of your MIL and all that is going on.....MY only thought on the matter, and I have been wanting to say this to someone.... We don't understand the delay in getting a Bipap. We want to ask if the hesitant person is scared of their vacuum cleaner? If not, then why be scared if a Bipap? It blows air, is electrical, and you turn it on and off at will. It would help her shallow breathing, would give her recuperative sleep, and likely would consequently give her more comfort and the will to live.
 

texgrl

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she is very claustrophobic and has refused a Bi-Pap. She is also a very heavy smoker, and if anything, has increased how much she smokes.

we have gotton in touch with the doctor, and we have a hospice nurse coming out to see her tomorrow to assess her needs, etc.

she has always been very independent person, so obviously this disease has been really hard for her to come to grips with. she doesn't feel that her existance right now qualifies as living. she has no use of her legs anymore, and very limited use of one hand.

i finally got it out of her that she is in alot of pain almost constantly....is this a normal part of the progression of the disease?

hopefully hospice can give us some support tomorrow.

thanks to all who answered.
 

Marjorie R. Wilcox

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Claustrophobic

:oops: So sorry to hear she is claustrophobic. That explains why she wouldn't like the Bipap. I am not the one with ALS, my husband is, but I am claustrophobic myself. I am okay in elevators, don't ask me why, but don't put me in a room with no windows! I am anxious to get out. I perspire profusely if I can't see a window. Oh well, I have no advice but to say my heart goes out to you. You are certainly doing your best to find solutions and ease her pain. Sometimes there just aren't any answers but to keep on keeping on. I would just keep asking her how you can help and listen to her.
 

ccox

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Hospice will be helpful. Many on here and other sites fight this disease tooth and nail. My mother, like your MIL, is not one of them. She went into a hole when she was diagnosed and has never come out. She is now bedbound and unable to care for herself. She, also, has refused any machines that would help her be more comfortable. Unlike your MIL, she opted for the feeding tube late in her fight and I think now she regrets it. It's prolonging the inevitable for her. At one point she wanted her DH to stop the feedings, but changed her mind because her priest told her she was going to hell if she did.
I'm sorry for what's happening to your family. It's hard to stand by and watch when there are things that could at least make her more comfortable. I think for some people, a machine is a machine----a suction machine for mucus and saliva is as bad as a ventilator in their minds.
Hugs to you and all your family. If it's your MILs wish to die, pray for a quick passing.:cry:
Carla
 

Gina

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Texgrl,I am so sorry that you are experiencing such difficulty and agony in watching your MIL suffer with this horrible disease.My only thought is that i think we all should have the right to refuse anything that may prolong unnecessary suffering however it sounds to me like she could be kept more comfortable with perhaps ativin or morphine.Im sure hospice will be able to recommend something to make her more comfortable.My prayers go out to you and your familly..! Carla i just have to ask this....what kind of a priest would tell someone they are going to hell b/c they choose to not prolong suffering with assistive devices? If that were the case a lot of people whom have had this disease allready and passed would be in hell including my husband who chose not to vent.!I dont believe that for a moment .God Bless all of you whom are still fighting this horrible disease.......Gina
 

Steve100

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Gina,,,,,the kind of priest unworthy of the name:evil:
 

ccox

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Txgirl, I don't want to highjack your thread--just want to clarify my earlier statement about the priest. He said if she discontinued feedings that it was the same as suicide and that she'd go to hell for it. He had no opinion about the use of machines.

How did the visit with the hospice people go? They seem to be angels on earth. I hope it went well.
 

texgrl

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sorry i haven't replied sooner. things are really crazy around here.

my mother in law agreed to have hospice come in, so we've gotton set up with that.

she is now having trouble with choking, swallowing and speaking. these changes seem to have came up rather quickly. she gets pretty scared when it happens, but we are doing better now that we have hospice coming.
 

vmd

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We Catholics believe that the basics for survival -food and water need to be provided to anyone, including a sick person. The priest was following church guidelines and was not trying to be unkind.
 

givenin

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Maybe so but life with this is a living Hell as it is and a person should not be told it will continue after they are gone, if she is depressed and it sounds like she is and has a strong belief in her faith I say lock up the pills get her some help and keep the priest away for a bit. Hopefully when the pain is eased she will level out and the priest will be allot more tackfull in the way he spouts off abou things next time.
 

disbeliever

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I'm sorry about your MIL - that can't be easy on anyone involved. I hope that she can find some comfort...only she truly knows how much she's enduring pain-wise. I wish you and your family only the best in helping her and one another through this horrible disease.

As for the priest making that remark, that is truly unconscionable, truly. To defend it by saying "that's the doctrine" is even lamer, to me. If that's the doctrine, it should be rejected. Period.

Sorry to get on that rant...it seems a lot of people posting here are pretty strong of faith, but not everyone is or is "comforted" by those ideas, certainly not when a faith leader makes a statement like that.
 
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