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lisaohgee

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My mom is having trouble sleeping and is having pain. Because she refuses to wear the Bi-Pap, she can't get any pain meds or sleeping pills, as her respiratory function is already compromised.

She refuses to use her feeding tube so she is obviously malnourished.

She refuses to get hospice.

My stepdad, her caretaker, has not be able yet to this point to bring himself to do these things even though she desperately needs.

I just want her to go. SHe's miserable, suffering, and I know it.

Anyone have any similar experiences? How long do you think she might have? I know everyone is different, I'm just looking for opinions from people who know how it is. Thanks.
 
If she is not eating and cannot breath well, I would guess that it isn't goint to be too long. A friend in Nashville made the same choices. I'm not going to sugar coat things, it was not pleasant. She was in agony for months. If your mother will accept hospice, she can get relief for the breathing difficulties. As for the malnutrition, not much can be done about that other than a PEG. Can she drink the nutrition beverage like Jevity, Ensure, etc.?
 
She can't even swallow water on her own, and I am not sure that my stepdad is giving her the nutrition beverages through the feeding tube. I don't want things to be sugar coated.

Since she won't go to the doctor, I can't find out what her breathing capacity is. I don't hear her gasping for breath, but I am not sure I would be...?
 
Wait, you mean the doctor is refusing to prescribe pain medication?

Can you talk to her about needlessly suffering and the suffering it is causing you and your step-father? Maybe with some gentle persuasion, she will say yes to Hospice. They can help make her comfortable, while she remains at home.

I would be more afraid of lingering in agony than allowing strangers in to help me go peacefully.

I hope she will listen to you or your step-dad. Will you keep us informed? I'm sorry you are having to deal with this.
 
Brooksea, yes the doctors will not prescribe pain meds since they will slow her respiratory system -- as they do in a healthy person -- and since she refuses to wear the BiPap, they can't give them to her for fear it will stop her breathing completely. THis makes sense to me.

The problem is that I don't see her very often -- I have two small children, and my parents live 35 minutes away. We can only go there on the weekends, and sometimes we are just busy or they cancel on us because she's having a bad day. So when I do see her, if I bring this up, she'll get upset, and cry and then I have to leave. I have mentioned hospice to my stepdad, but he won't take that step since she's so adamantly against it.
 
Brooksea, yes the doctors will not prescribe pain meds since they will slow her respiratory system -- as they do in a healthy person -- and since she refuses to wear the BiPap, they can't give them to her for fear it will stop her breathing completely. THis makes sense to me.

The problem is that I don't see her very often -- I have two small children, and my parents live 35 minutes away. We can only go there on the weekends, and sometimes we are just busy or they cancel on us because she's having a bad day. So when I do see her, if I bring this up, she'll get upset, and cry and then I have to leave. I have mentioned hospice to my stepdad, but he won't take that step since she's so adamantly against it.

I'm sorry-but this doesn't make sense. Not what you're saying--what the doctors are saying. Hospice would certainly get her morphine to ease her discomfort and also any air hunger--and unless I'm horridly mistaken--a bipap is NOT required for hospice.

Explain to her Hospice can go on for quite a while--it's not your giving up on her--it's to allow her to be so much more comfortable.

Many people are so misinformed on what Hospice is for. It's to make the last months of their life as peaceful and pain free as possible.

There is a little monitor that is called a pulse oximeter. They are inexpensive. It will let you know if she's getting oxygen to her system. But--if their doctors won't prescribe pain meds in a terminally ill ALS patient--she needs a new doctor. Have this one write the Hospice order--then let Hospice take over.

Can you tell us what she has against Hospice? They can help her so much. I know of long-term members here with Hospice--that are still very productive here--but much more comfortable because they have that added aid.

Please encourage your step-dad to at least call them and talk to them or do so yourself. Here in FL, Hospice of the Comforter is wonderful.

Many doctors just don't get it with the morphine -- it's not intended to make her die sooner--it's to make her passing (since she's not allowing nutrition through the PEG) much more comfortable for her.

My prayers are with you all
 
Notme, the doctors aren't saying she can't get HOSPICE without the bipap. They are saying giving her pain meds would slow her breathing down to a dangerously low rate and since she is refusing to use the bipap, it's a risk they can't take (this is what I gathered from what my stepdad told me).

She sees Hospice as the end. I've even gone the route of telling my stepdad that the hospice would be more for him, so he could get rest, so he could get a break, etc., but I don't know if either of them has grasped the finality of the disease. I know Hospice would be helpful and wonderful. A social worker has visited but the second she said the word hospice she freaked out. I think I may ask the social worker to come again.
 
Hi Lisa,

You don't want it sugar-coated. Good.

If she won't accept hospice, you need to find her a new doctor. Yes, the doctor is correct that the pain meds might compromise her breathing and it could be dangerous for her. She could die. But at least she would be comfortable. Your mother is terminally ill and if she continues with her choices the end will come soon anyway. This is essentially what hospice will do if necessary -- give her pain meds that make her comfortable although this comes with an increased risk of death.

I am so sorry for your situation.

-Tom
 
Thanks for your support. The nurse from the doctor's office sent me an article showing how hospice isn't the negative thing everyone thinks it is. I've printed it out and plan to give it to my stepdad. She also explained that the hospice help can come weekly, daily, etc., so we might even be able to get away with just telling her it's a nurse or something and not using the word hospice.
 
Please consider using hospice. they were a god send for us as we wanted to keep my father at home. They provided the morphine and other drugs and they also provided support when we needed it and guidance on how to deal with all this. They also acted as a liaison between us and the doctors.

My father did not want anything to prolong his life and when he began to have trouble breathing they provided an oxygen concentrator for him which he used right to the end. They explained it wouldnot prolong his life just make him more comfortable. He accepted that.
 
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