I love how she always fights for what she thinks is right, but also her intense joy in life. I remember when she had been to a show or a parade or something, and then afterwards stopped and had wine and madeleines for dinner. Not that she ate like that often, but the sheer joy she took in doing such a little thing is still typical of her today. It still seems so essentially JZ, even in these circumstances.

::curls up quietly in the corner, just to be around her people::

Feeling the same way, Smonster.

Yesterday was taxing. Physically, emotionally and intellectually.

I had long conversations with Drs. Tambe, Stewart, Moreno-John, Patel, Tay and Van Loon, as well as Case Coordinator Rohan, and Nurses Renee, Roan and Alex. And a dietician and an X-Ray tech.

And it was all about understanding the implications of every choice related to Jacqueline's care as we tried to transition to hospice. I had to absorb a lot of highly technical information about TPN (Total parenteral nutrition) lines and why doctors don't like to use, them and the NG (Nasogastric) Tube down Jacqueline's nose which I promised her we would remove at night so she could sleep and what a G-Tube (Gastrostomy) procedure involved, and whether Jacqueline could be fed through it. All from different doctors and nurses who had slightly different takes and agendas and also manners of presentation.

At the end of it I understood everything I needed to know to make a decision with Jacqueline, but I had a brief thought that my entire process that day would have been impossible for somebody on the spectrum. Because all of the doctors are being circumspect, and don't want to push you in one direction or another, but they have more information/experience/knowledge than you.

So I had to read each doctor very carefully, to ascertain why they had a particular qualm or hesitation, or why I was framing a question incorrectly etc.

There's some combination of letting the patient and family decide, with a little dusting of liability, and also a desire to be gentle with how they unfold the bad news to you.

Then I would check in with my nurses to get their perspective and experience, and then go over it with Jacqueline but she's really exhausted and has a tube down her nose and throat so hard for her to process all the details. But I know what she wants, and I'm advocating for her with the doctors to get to agreement on the plan.

Hec, it’s all so much for you to deal with. My thoughts are with you.

I want to say that she's lucky to have you, but I know she'd do the same for you. I guess I'm glad you have each other.

NG (Nasogastric) Tube down Jacqueline's nose which I promised her we would remove at night so she could sleep

In 2003, when my grandmother was in ICU with (among other things) a bleed in her stomach, she had an NG tube for 24 hours to help clear the blood out. She had to be restrained to keep her from pulling the NG tube out. Every time she woke up, I had to help her re-orient, and then she would beg me to "let her loose" until she exhausted herself and fell asleep for another half-hour. I think that was the longest night of my life.

...everything I needed to know...I know what she wants....

Sounds like you are doing better than most would in this situation. I am impressed.

I want to say that she's lucky to have you, but I know she'd do the same for you. I guess I'm glad you have each other.

Exactly this. When I have taken care of ill loved ones I knew they would do the same for me, and often reminded them of that fact.

Yes. During my Dad's final hospitalization he apologized for being a burden, and I told him he definitely wasn't that. When someone you love is in dire straits, you want to do everything you can for them.

You are both lucky to have each other. I hope you have someone to lean on during this and where you can take some time for yourself to regroup.

Talking to that many doctors and specialists is so draining. I hate that they can't just be more direct about options and recommendations.