To treat the pneumonia or not..

[GilWest]

Mom most certainly has some pneumonia. Sats are lower and lungs are very congested. Palliative care recommended not treating due to her condition versus the ordeal of a hospital stay as it will most likely keep coming back. Mom is not very alert, but I still know she is in there. I chose not to treat, but it is hard watching someone slowly wind down and I am having second thoughts. I will state again as I have before. I would never recommend the vent for anyone. Unless you have an army of dedicated caregivers, think carefully.

 

[scaredwifetx]

I am so sorry you are in this position. I found myself in a similar position with my mom. Note: husband has ALS, mom had lung and brain cancer. My mom was very clear well before finding out that she was sick, that she did not want any treatment that would put off the inevitable. Mom was not alert and could not speak but I knew what she wanted. We kept her comfortable, played her favorite songs, we sang and we talked to her until the end. Everyone is different but I think you made the right choice. Just spend the time with her and make sure she has no pain if at all possible. I had a hard time watching her wind down but I knew she was tired and ready to go.

My thoughts are with you. This was so hard for me and will be for you. I miss my mom but for the last few days I have had a calming taking over and know she's at peace. My heart breaks for you and I will be thinking of you!

 

[Atsugi]

I watched, and helped, several of my old relatives through their last days. The only one that I call "a good passing" was my wife, a PALS who chose to stay at home on palliative care, with no vent and no feeding tube. With all the other relatives, the more medical intervention they received, the worse it was for them.

When my time comes, I choose home.

 

[affected]

Oh Gil, this is so hard.

My thoughts are with you and that you can make the choice that sits best with you. I would choose palliative measures, but only you can make that choice now xxxxxx

 

[lgelb]

I'm very sorry to hear, Gil. The hardest thing is to see the person still there and at the same time not reach to pull her back from the tipping point, as you have done for your mom so many times. But, as you know, there is a time when that is unalterably the right thing.

Best,
Laurie

 

[Nuts]

Gil, my heart is with you. It sounds like it's time to give your mom her freedom--not a choice any child of any age should have to make.

Becky

 

[GilWest]

Gil, my heart is with you. It sounds like it's time to give your mom her freedom--not a choice any child of any age should have to make.

Becky

I am not entirely sure she is ready to go...

 

[affected]

How is she doing then Gil?
Untreated pneumonia becomes harder and harder to treat as it sets in, so if I were in this situation I would be thinking either treat ASAP (which has passed) or treat palliatively.

What treatment measures are you giving her.

I can't imagine how this must be tearing your heart just now xxx

 

[Buckhorn]

GilWest, I am so sorry about the torment that you are going thru. My heart goes out to you. Having watched 2 close family members die (a brother @55 and my nephew at 42) from terminal conditions for which every last treatment option was given to them, I can tell you that life extended beyond the point of inevitability is torture to loved ones and the patient. I personally believe that you are making the right choice in offering paliative measures only.

 

[GilWest]

We have palliative care. All comfort measures are in place. Things do not seem as serious as they did last week. She does not seem as sick to me and is much more alert (for her). Vital signs are improved and oxygen levels are higher (mid/upper 90s).

 

[GilWest]

How is she doing then Gil?
Untreated pneumonia becomes harder and harder to treat as it sets in, so if I were in this situation I would be thinking either treat ASAP (which has passed) or treat palliatively.

What treatment measures are you giving her.

I can't imagine how this must be tearing your heart just now xxx

This is the thing. What is being considered pneumonia is most likely consolidated secretions in her lungs. She has a very weak cough, and nothing much at all comes up with suction. I have been giving her hefty doses of mucinex, saline flushes down the trach with deep, hard breaths via an ambu bag, and percussion on her back. Still nothing. She has no high fever, I am just sure it is time. They say her lungs sound awful, but the last time she had pneumonia was early on, and I saw how she struggled with it and the awful, bloody, green mess that came up via suctioning then. This is not the case now. She seems so relaxed at time and is calm while awake. She is very tired and afraid. Since she cannot really respond it is impossible to communicate. Letting someone die from a possibly easy to treat bacteria because of ALS is an impossible decision...at this point, no decision will be completely right no matter what I choose to do for her...

 

[affected]

Such an awful beast

I agree, with what you describe it doesn't sound as much like pneumonia as such, but just the lungs failing to clear everything because of the muscle failure, despite all your incredible efforts.

I often think of you, and though I'm sorrowful that you are posting again because of this latest turn for your mum, I'm glad you are here. I don't know that I can offer anywhere near the support I would wish to give you. But for me, just knowing I could say what was happening and have some support here was really important all the way, but particularly at the end of things.

 

[GilWest]

The vent is working harder, too.

 

[scaredwifetx]

Gil, my thoughts and prayers are with you. This is so incredibly hard. Three weeks since mom passed and I am now starting to understand that my choices were her choices and knowing that she is pain free. I can see how torn up you are. Trust me when I say I was so sure I would not be able to get past my grief and doubts. Your love for your mom will guide you.