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MAC diagnosis with w/limited continued symptoms

MAC & Bronchiectasis | Last Active: May 25 9:52am | Replies (8)

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@carriew

That is a great idea and makes total sense that they are "doing" their jobs. I have accompanied her on visits to the ID and pulmonologist, but not her primary care doctor lately. Out of the three, he appears to be the least open to me accompanying her on her visits, probably because I ask a lot of questions. I see you are a volunteer mentor; thank you for your response. How do I go about identifying a palliative care specialist?

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Replies to "That is a great idea and makes total sense that they are "doing" their jobs. I..."

Hi Carrie, I would start by calling a large hospital in my area - they often have someone on staff. You can also search for "Geriatric and Palliative care near [Mom's location]" or if she is in a large clinical system that has multiple specialties, there may be someone on staff with that as their specialty or sub-specialty.

I hope you find the help she needs. Do you think your Mom is ready to decide to just enjoy the rest of her life, with acute needs met like treating infections, but without a rigorous search for cures to tough things like MAC?
Having palliative care for Mom on her care team during her last, long hospitalization helped the whole family (there were 5 siblings and about as many grandkids present) realize we were past treatment and ready for comfort and quality in her last months. This was the first time everyone got "on the same page" and understood some things are irreversible. Everyone laid off and quit pressuring my sister and me to find a cure or treatment for multiple ailments, when our Mom was just tired of it all and wanted to relax.

Mom got to see and/or visit by phone with many friends and relatives in relative comfort without being prodded to have more treatments, more therapy, more appointments... When the time was right she transitioned to hospice care and died peacefully surrounded by loved ones.

I hope I have the opportunity to make the same choice when the time comes.