My grandfather has taken a turn for the worse again today and is back on some kind of pressurized oxygen mask rather than just the cannula. He is alert and as intelligent as always in his life. He has a living will and did not want to be intubated at the end of his life, but right now he's conscious and cannot breathe well at all. His O2 rate drops to under 90% within 30 seconds when it's removed briefly for him to try to eat a bite. If an emergency happens, does he want to be intubated again? Right now, his answer is yes. That's what he told my grandmother tonight. Others think his living will should stand as is, for him to go naturally, even if that's not what he's currently saying. I'm staying out of this and leaving this to my grandmother and his children and him. I thought the will stood as it was. I feel torn several directions.
I can't say he's irrational at all. He is clear-headed. Honestly, I understand. He loves his family and loves living.
Everything changes when people are in medical crisis rather than hypothesizing about it. I'm told Elizabeth Kubler Ross made some changes to her beliefs at the end of her life. Yes, he cannot live indefinitely but he loves life. How when someone can't breathe can you tell them no, that they won't be intubated again?
Another option is that he could get a tracheostomy and be put in hospice at home. I don't know that he would survive that procedure, would survive full sedation--he's not been able to have needed surgeries because of the risks to him. My friend lives with a tracheostomy, but she is much younger, my age.
This is heartbreaking. It feels like killing someone to deny a trach. People can live with them, though I don't know how much time he'd have without. He lives at home with my grandmother and uncle and is not faded at all, sharp and bright. I don't know what to say, what to think right now. I know disability is okay. I know this. I know trachs (as opposed to intubation where your hands are tied down and you can't speak) are okay. But what would that procedure do to him if a needle biopsy did this? Not giving him air feels like murder. And yet if a trach didn't go well I wouldn't want him to be in agony from that.
He loves my son dearly--I am told if he has a favorite that it's my son--and he hadn't been able to see him in a few weeks. I wish they could see each other again, just once, but those nurses are being strict about no under-12. Yes, my daughter's been in to see him many times. She's okay with this, really okay with this, has been holding his hand.
Nothing about this is easy. I thought the outcomes and decisions would be clearer for everyone. This big grayness is awful. I don't mean to sound like I'm overly distraught--while I've done some crying, I am thinking maybe too much right now. I'm also hating it that my pain has been so high (after a few really good days) to allow me to be at the hospital as much as I'd like to be--for my grandmother more than anything.
Note: I will make myself available tomorrow morning, when they meet together to make this decision, to give an informed lay response about trachs, hospice, etc. if they have questions (I was asked a few).
Umm, oh yeah. He called my grandmother late last night after visiting hours (a nurse can bring a phone in) saying he'd just been given the wrong medicine and felt really funny/wrong and that staff were shouting at each other about it at the end of the hall. I don't know if that's what it was really about or no, and the feeling may or may not have had anything to do with the medicine. But that's when he took a turn for the worse. God, I wish for clarity in all of this. This sucks.