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monkeysmom (@monkeysmom)

Pneumonia, MAC and Aspergillus ?!?

MAC & Bronchiectasis | Last Active: Aug 22 5:38pm | Replies (8)

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@sueinmn

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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Replies to "Jane, my heart goes out to you! I understand your Dad being tired. There were days..."

Thank you Sue. I agree that a bilingual professional would be ideal. Remember that old saying “two hens in 1 henhouse” that’s the hard part, although I did write her a rather long letter in hopes that Google translate didn’t butcher what I was saying. I gave her tips and ideas in a gentle way to remind her she isn’t alone and it’s absolutely ok to ask for help. Unfortunately unless my dad faces what is the new reality of his life and stops trying to pull the wool
Over everyone else’s eyes. I fear not much good will come from our visit. I did already make many copies of different paperwork that if he wants to fill out he can and it will be available, I also found a mobile notary incase he doesn’t want witnesses to sign his paperwork. My dad and I have always been close so that’s the hardest part. I don’t have biological siblings. I do have a step-sister here in the states and a step-brother who is still living abroad. Neither of which are my dads children other than by marriage. I cannot count on the step-sister to help at all. Good gracious I’m really airing all
My family drama aren’t I ?

I appreciate everything you’ve said here and I will keep reading other posts as I find it both informative and comforting. I will definitely let you know how everything goes I’m hopeful that even in the moment if not taken well in time and separation over the time I’m there we can revisit and talk more about the hard stuff.

-Jane