Jane, my heart goes out to you! I understand your Dad being tired. There were days when I was battling MAC and the treatment for it that I was beyond tired. You (or his sister) might have to directly give him permission to say "No more." My sister and I had to do this with my Dad when he was battling cancer. My Mom was brave enough to tell me herself that she was ready for hospice and no more interventions. But then she left it to me to tell all five of my siblings and all 18 grandkids.

I love that you are willing to accept and support his decisions. And that you recognize that your advice may be unheeded, but you still don't turn away.

Since you are so far away, and further there is a language barrier with his wife, do you think there is any way to get a palliative care person (bilingual) involved? Sometimes instruction on issues like caring for his equipment would be better observed if an "outside expert" instructs and arranges a home visit from a respiratory therapist to demonstrate. If that was clean, it would be easier to overlook the condition of floors and corners!

Another possible option is to have the doctor order all disposable tubing, masks, mouthpieces, etc - with written orders to be changed weekly. You might have to call every week to remind them...

I agree that it is imperative to get his end of life paperwork in order - maybe talk about how difficult it will be for his wife, with the language issue & her not driving, to handle this by herself. Talk about what a kindness he will be doing to get things ready for her. Maybe ask her to have a bilingual friend or family member she trusts to be there so she understands everything that is going on. If you bring the necessary (California) forms, and you have 2 people to witness them, just maybe you can get it done during the visit instead of him saying he'll do it later.

I'll be holding you in my thoughts feel free to ask more questions, and please let me know how your visit goes.
Sue

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