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BU99

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Loved one DX
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Uni
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IL
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winfield
Hello, I hope you can help me, and I apologize for asking such a difficult question, but I feel very overwhelmed right now. My mother was diagnosed in July with extremely progressive ALS. When she was diagnosed her lung capacity was at 30% and has diminished considerably since then (while probably not accurate her last test in September suggested it was around 12%).

A month after her diagnosis, she received a g-tube for liquids, medications, and occasional feedings (she really didn't want it, but needed it for hydration). She wants no extreme interventions, like a ventilator and only uses her bipap at night. She refuses to it use during the day.

Currently, she is in hospice and living at home with full time caregivers (she's single, so the caregiving situation has been extremely difficult). This past week I thought she might not make it to Thanksgiving because she developed a horrible, rattling cough, but it turns out she is just aspirating her saliva (even with the use of atropine and other drying medications).

I talked to her hospice nurse and the local ALS nurse, and they asked what her views on stopping the feedings were. She wants to continue feedings, even though she can only do two a day because of fluid retention.

My question is this - if she continues the feedings, even at just two a day? How much time could she have? Her quality of life has diminished considerably, and she's about to start morphine three times a day (vs. morphine at the start of a coughing spasm). This whole situation has been absolutely devastating, and I hate seeing my beautiful mother like this.

Obviously, we must listen to her wishes and continue her feedings, but I'm so worried and upset. Can anyone give me guidance on the next few months, weeks, days? Thank you for your help and concern.
 
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I don't think anyone is able to honestly answer that question. What does the doctor say? I would think it would come down to her will to live.
 
My husband was at 30% fvc about a year before he passed. How good the lip seal is, the mouthpiece, fatigue level, etc play into the readings. Once my pals was in the 20s, they stopped testing and did only symptom management.

No one can tell you for sure when or how things will progress. It is a very individual disease.
 
I can't give any advice on what time frame is likely, but I guess I will poke my nose in here anyway. Two cans of formula a day is not enough to provide her nutritional needs so it will affect her general health. It will not cause death strictly from starvation as much as from making her body unable to fight infection or general organ failure. I am puzzled by the lack of intervention to prevent fluid retention. I know that Hospice doesn't pursue life prolonging treatment, but I would consider being left hungry and weak a comfort issue, not a life expectancy issue. Adding or increasing a diuretic seems reasonable as a comfort measure even if medication to improve her heart function to reduce fluid build up would be an intervention beyond Hospice intent. Also, even though she is no longer taking food by mouth, aspiration of saliva can lead to pneumonia. There is a saying that "Pneumonia is the old man's friend" that I often think of with ALS. Maybe it is a good stopping point for intervention beyond comfort medications. Morphine is a very good comfort medication in these situations.
 
Just letting you know that my Pals has fluid retention also. We make sure that he spends time horizontal with feet elevated and even his hands at a higher level than just down by his side. He wears pressure stockings too. Even for showering,we don't take them off. Of course, we change then for drier ones later. He also cannot breathe without his bipap,day or night. I guess we have to follow our Pals wishes as they navigate through this horrible disease. The power of the mind and the will to live can be amazing I think. Sometimes I wonder how my Pals can tolerate it all? I asked about diuretics, but all medicos said that it wouldn't be suitable. ( don't know why, except that toileting is already one of our most annoying things and one of the things that makes my man so anxious and exhausted,so perhaps that is why we don't have diuretics ? ) Keeping your Mum comfortable would be upmost in your mind,so I hope that some of this helps you.
 
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