Signs of general decline...

[JohnHMich]

It has been awhile since I have provided an update. We are starting to have issues with intake again. We have reduced her food and water to avoid problems with nausea, stomach pain and large differences between intake and output. Her skin issues are spreading around. Cyanosis in her toes and fingers come and go. Reduced lung sounds was the latest change noted by the nurse. Multiple mucus plug issues with use of cough assist and suction to resolve. We started her on expectorant to head that off. She still really wants to be in her chair. And she really doesn't want to use her ventilator.

We now have plenty of help, but it seems like death is nearby. The nurse used the term pre-active dying which seems to be a term hospice people use. Per the hospice websites pre-active dying is the approx. three weeks prior to active dying which is around three days long. The nurse thinks she is not quite in the pre-active dying phase.

People ask how long she has and I still answer that it is unknown. She could succumb to one of the acute issues we have been dealing with or from steadily reduced lung or kidney function.

 

[Mary2]

Hi JohnHMich, So glad you have the help you need. Sad to hear about your PALS decline. Not easy to be a CALS, your doing a wonderful job. My heart goes out to you.

 

[affected]

John you are doing such a beautiful job in following her wishes, even if they are not always the choices you would make.

The nurse is correct, reducing intake, cyanosis, reduced lung sounds are all signs she is heading that way. But of course the time frame could still be days or months, and that is really hard to watch. You seem to really have a good understanding of what is going on, so I hope this helps you stay in that place of acceptance.

Yes, different choices could be made, but ALS is going to take her, so at least she is making decisions on her terms. That would mean the world if it were me.

Please talk here whenever it will help you and we are right behind you.

 

[JohnHMich]

Amazingly we have made it to October. I have no idea how, really. I was sure the choking, cough box, suction routine was going to eventually be what ended things. But it has become rare again with a lot of fiddling. We are finally getting her pain and anxiety under control. Air hunger seems ok. Can’t sleep off the vent. Still won’t use it during the day.

 

[affected]

Thanks for updating us John I was thinking of you recently. Some people with ALS and other diseases can rally in amazing ways, probably due to your diligent fiddling with strategies. Sleeping on the vent is wise now.
I hope you are holding up ok, it is exhausting I'm sure.

 

[Mary2]

Hope you are doing okay! So glad you have help and a nurse coming in to see how you both are doing. Interesting your PALS still goes without the bi-pap during the day. ALS does seem to impact everyone a little differently.