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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 Thank you for your reply. My dad is not a veteran, we did however work many years in our family’s citrus and Olive farm- hence the dirt and massive amounts of pesticides (many of which farmers including us used even after taken off the market) he was a long time smoker I want to say he finally quit around age 45 or so when his health concerns became too much for my mother to deal with and their divorce.

I like his pulmonologist pretty well, he isn’t one to really talk about the bad and long term what that means. That’s extremely frustrating for me as I am a firm believer in knowledge being power and try to educate myself the best I can. When the lung fibrosis diagnosis came my dad stopped me from speaking with the doctor and until now 4 years later I am able to speak to the dr again. I’ve preached until the cows come home about changing tubing and keeping O2 and CPAP clean. I feel for the most part it falls on deaf ears.

He doesn’t want any heroic measures taken, unless he will be able to regain his health and sadly I do not see that happening.

I live 2,000 miles away from him and I have no problem jumping on a plane at a moments notice if my dad needs me, I sometimes don’t think he understands how much I still need him. He gets scared and comes to terms with what is happening to his body and then with the snap of a finger he is back in denial. Maybe he doesn’t want me to know he is scared or maybe truly he believes he will get better. I just know that I need to support him with whatever he chooses to do with his health issues. It does not matter what I would do, what matters is he is heard and his wishes are respected in order to make that happen. He is remarried and I love my step mother but they have a serious language barrier, she doesn’t drive and she is 70 herself so getting on her hands and knees scrubbing and cleaning just isn’t going to happen. He has kept his health issues from her for many years so he doesn’t “worry” her. I have told him I don’t agree with that and he needs to be honest with her so they can help one another.

I am going to Ca in 3 weeks along with my aunt and cousin (his sister and his other sister’s son) in hopes we can talk to him
Face to face and get him to listen to how we feel and help him with anything he needs such as a PULST, DNR, power of attorney etc. he knows I am coming but doesn’t know that they are. We hope too that he sees that we are a support system and maybe he will confide in us. I just know I feel helpless. I truly believe in my heart he is tired, and he doesn’t have the fight in him. Being a mother myself I don’t know how I would tell my children that. So it’s no shock to me that he hasn’t said that to me. I just know that I need to love him and help him if I can.

I’m happy to answer anything else that I can if you have other questions.


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Replies to "@sueinmn Thank you for your reply. My dad is not a veteran, we did however work..."

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.