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Tx Daddy's Girl

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Loved one DX
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Tx
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Beaumont
I know we are close, a few moths, maybe weeks. Dad is napping more, can't hardly communicate. He's having headaches, jaw pain and shoulder pain lately. He's on methadone and takes morphine occasionally. He hates morphine because he doesn't want to be out of it and I respect that but I also tell him that he doesn't need to be a martyr either. Is this pain normal at the end? I had hoped he'd just starve or get pneumonia, I hate the pain, he's suffered enough.
 
Headaches are common due to CO2 buildup as the respiratory function declines. Shoulder pain may well be due to immobility. That's something that range of motion exercises can help tremendously. Is he using the methadone/morphine for pain or air hunger? Is he using a bi-pap? If he's using the methadone/morphine for air hunger, he could use oxygen instead. That will relieve the air-hunger, although because the respiration is weak the CO2 will still build up. Does he have spasticity? That can be quite painful and could account for his jaw pain.
 
He has no air hunger - his lungs are still pretty good and he requires no oxygen. He refused a bi-pap as well. I agree with the lack of mobility, but there isn't much we can do because if we move the arm just a few more degrees out he winces. I dont think he has any spasticity in his face but his voice is almost gone so maybe there is.
I guess I just wasn't expected a painful end.
 
Hi. I'm so sorry about your dad's pain. I was surprised to read your "maybe at the end statement" thinking that because of the pain symptom. Not knowing anything else, e.g., how long he's had ALS or his progression, not to mention - I am not medically certified I am not qualified for anything other than the fact that my husband has ALS and has had it for 4 years now. That said, he is doing well all things considered and is no where near the end - thank God. However, he has had pain for quite some time now. He is also on morphine and methadone as well as a couple of anxiety pills, which have all helped through the painful, annoying and frustrating symptoms.

I pray for your dad and your family and hope your dad's pain subsides and/or improves. Again, my heart goes out to you all. God bless.
 
The most common source of pain is joint pain from immobility and leg pain from fluid build up.
Doing proper Range of Motion movements regularly, at least every day, will alleviate joint pain from immobility.
A vigorous pushing massage on the feet and legs will push the fluids out of the legs.
Neither of these are indications of the end of life.
If his urine is dark and cloudy, and if his Arterial Blood Gas shows an excess of CO2, then that would be two indicators of approaching the end.

The end doesn't have to painful, and the use of morphine doesn't have to be excessive. He still has that choice.
If he's wincing and still has some vocalizations, then I'd be surprised if this was the end.
 
Did someone tell you he is close to the end?

Usually it is breathing that is the end stage issue, but you said his lungs are good?

The pain is very likely as has been suggested from the frozen joints. I know that there is a point where massage and ROM are very difficult and the ROM can cause more pain. We are at that point, I do ROM that is moving the joints about an inch. The massage helps but it is hard to do as he is so frozen in place. We did a lot of massage and ROM in the earlier stages.

Pneumonia is an awful way to die, I have just had a pneumonia episode with my husband and it was something I hope we can avoid again. I would rather his breathing just deteriorates, CO2 builds and with palliative support he can slip peacefully much the way Mike described his experience with Kris.
 
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