Sorry I am not sure of the legal-medical terms. Long story short, my dear Grandma has been in a NH for about 2 years, paralyzed after a big stroke, and has big old active cancer tumors growing around her bowel and bladder, a colostomy bag, some cognitive decline which I am finally admitting it getting serious, intractable pneumonia which 2 doses of antibiotics cannot shift, and is living with all the loss and trauma that seems to come with old age, and I find it just heartbreaking to see her.
Long story long:
A week ago my uncle, who is her POA in all affairs, took the advice of the locum doctor that maybe a hospital visit was warranted to see "what's going on" with her cough, despite the regular doc (who was on a well deserved 2 week holiday, poor guy!) saying it was just her pneumonia and her immune system basically not working anymore and there's nothing else that can be done. Well, after getting hoisted out of her bed, a very disruptive ambulance ride, 48 hours on a gurney in the hospital hallway feeling terribly rattled, tests revealed........... pneumonia. There followed the ambulance ride back to the NH and 4 days of somnolence and delerium brought on by sheer exhaustion.
Her full time caregiver has told me that her code status is still such that she will be rushed to hospital if there is a fever or any other sort of emergency type event, rather than be managed in the NH.
Despite the regular doctor's unwillingness to give a 3rd dose of antibiotics as useless, uncle pressured him into prescribing. Uncle is not ready to think about palliative care for Grandma. Wants it all done.
I think it's well beyond the time that palliative care be consulted. 93, mega cancer, stroke, paralyzed, her poor egg is scrambled, pneumonia, incontinent, and on top of it has developed such anxiety when alone that she screams for the caregiver all night. The caregiver is a very warm-hearted women who has grown so attached to her that she's instructed the nurses to call her on her personal time at night if Grandma gets agitated or screamy, so she can try to reassure her or even come in briefly.
It's too much. When is enough enough? Why does uncle want to rip her out of what comfort remains to her for hospital tests? As he put it, "more information is always better."
I am not the caregiver, nor am I making the decisions. I know many on this forum are frustrated by the judgment of family bystanders and I understand that. Should I talk to my uncle about palliative care for her? I know he'll just blow up at me, it's his personality. I tend to walk on eggshells around him, and keep the relationship superficial as I've been screamed at enough times over my life. But maybe this is an issue that's worth raising.
Unfortunatly some people make things as hard as possible. Your uncle sounds like he can't see his mom through his own fears.
Do you have a family friend that would be willing to ask him what his end goal is with all the information he is collecting at grandma's expense. Sometimes we just go and do and forget that we should have a goal for all of it. We're so busy juggling the balls we don't see anything else.
2 years is enough time to get stuck in autopilot juggling to many balls or maybe they're to heavy.
Can you write a letter telling him that it is in grandma's best interest to bring in MORE care. Talk to her doctor and ask for help in explaining that at this point his choices are more damaging to her wellbeing and will not help her have any quality of life, let alone prolong it, they will create more agony in her torment, as you saw with the delirium, that is so common for people in her condition,by the way.
Maybe just acknowledging that you don't want to loose grandma either, but it's time to realize that you already have, do this in a public place where you can leave if he starts yelling. (I think that is a big indicator that he lives in a lot of fear and it is manifesting as anger, just my opinion from my experience with my brother)
Hugs to you, this will all be over sooner then you can imagine, stay strong and try to remember grandma before illness and age stole her away.
Being Mortal was the book that opened my eyes to other ways of living the end our our days! It was a world altering book for me!
thanks both of you!