I hope you don’t have to advocate too hard, David, to attain what should 100% be Jacqueline’s right to determine. A decision should bring peace and acceptance, not be an invitation for strangers, even if they’re medical professionals, to insert themselves.
They were completely willing to let us decide our process but it took a lot of work guiding me through the medical issues in every branch of the pathways. Each choice had complications and nuances that were hard to grasp. And I just didn't know what to ask or how to ask it at first. That's why it took so long.
I could have just told them to take out the NG Tube and they would have. But there were reasons to keep it in as well as long as she was in hospital.
Jacqueline's gentlest riposte ever. Delivered with absolutely no snark or anger, and perhaps even a touch of kindness... JZ: "Oh, look it's 8 o'clock. Visiting hours are over."
She's marvelous.
Did I start to berate my terminally ill wife on her hospital bed with my very sharp tongue despite my assurances that I would stop doing that.
If you chose sharp tongued beration you will know that I am not a fully actualized human being quite as yet.
I have a few stories (about me) from Tim's current hospitalization that I will probably never share, because I'm ashamed at how strongly they suggest that I am actually possessed by a demon. If I were yelling at negligent staff, that would be one thing. But chastising the actual patient who was struggling with a pain level of 7 and fully doped up on IV dilaudid was...not my finest hour.
If you chose sharp tongued beration you will know that I am not a fully actualized human being quite as yet.
Who among us is, my friend.
Jacqueline's gentlest riposte ever. Delivered with absolutely no snark or anger, and perhaps even a touch of kindness... JZ: "Oh, look it's 8 o'clock. Visiting hours are over."
She's marvelous.
Still and always.
That sounds perfectly Jacqueline.
I still remember getting my NG tube inserted over a decade ago. It was traumatizing. My heart goes out to both of you.
It’s normal to be scared and panic and react poorly in the face of this. And her response was so perfect. I may start using that whenever anyone is testing my patience!! It’s such a perfect boundary setter.
I’ll continue epic tales of Nurse Renee when I’m back home. But I just brought Matilda in to see Jacqueline and there were much tears of reconnection. They are so happy to be together.
Last night when Jacqueline had her tube down her nose she said ruefully, “You can’t kiss me.”
And I said, “ Oh, I can kiss you!” And proceeded to do so all around her tube and on her cheek.
Then some nurses entered the room and she said “No, Nurses!” With exactly the intonation of Madeline Kahn’s “No tongues!” In Young Frankenstein.
I had to have a NG tube a long time ago when I needed activated charcoal and when they tried to give it to me orally I immediately threw up every time (I barely finished swallowing when it would come back up). It was an extremely traumatic experience for me on top of the already traumatic experience I was going through and I know that JZ didn't have to deal with the situation I did but it is really uncomfortable. Especially when a nurse is holding it and keeps moving back and forth but doesn't say anything so you're head gets yanked around by the NG tube.
JZ is really marvelous.
I’m so happy Matilda is able to be there.
Hec, you've been her hero. Nobody would expect you to always say the perfect thing, too,
You have feelings, too, it's a lot.(and that is kind of a horrible thing that happened)
Luckily, it wasn't your last moment.
I'm not sure if it helps or not to say that I would have, most likely, done the same fucking thing. Despite a subcultural reputation for calm spirituality that I deserve less than any disabled human alive(except Larry Flynt or someone, perhaps.)
