Friday October 6th 2023

It's me again~

Tweety, I will call the floor and ask for a doc to call me.

Joe, hope your trip is good. I can't remember where you are going, but a 3 hr drive is considerable! 

I had called the 20 y.o girl across the street who had volunteered to come sit with Nannie and Momo if I needed her to. I left a verbal message and then left a text-message yesterday, but I have yet to hear back from her. I think maybe I should just stay home. I am still feeling rocky about all this, so maybe I need to stay home and try to take it easy.

I woke up an hour ago, but I am going to lay down again. I'm sure I'll be back here later on.... Thanks everyone for your kind words and prayers.

Okay, hubby's (OUR!) doctor called me back. He said he didn't really think Eddie was going to pull through this; even if they get a degree of improvement with him, there is always the (strong) possibility of relapses. The doc is going to set up a meeting with the Palliative team to see where we need to go from here. He has known me for a long time and is easy to talk 'plain' to; he says he thinks I am a very smart and wonderful person with a big heart, and he doesn't think it is unreasonable to step hubby's care down some, because all the stop-gap measures are okay, 'but'....!  I told him about Eddie's fear of ending up an invalid and having to be pretty much total care, for however long he'd be in this limbo state. Our Dr is such a good man, and I absolutely trust him to understand, He said he agrees with me and said he is here for me any time I need to talk.

This is the first time I've had to take a Xanax at the beginning of the day. I only took 0.5 mg, though the doc gave me a new script of 1.0 mg BID. I just had to calm my stomach down (emotional nausea), and bring my shoulders back down from above my ears. But I do feel some better after talking with our doctor.

OT is working with PT and they got hubby out of bed to stand for a minute and he took two or three of those shuffling half-steps, and then it was back to bed. While I had OT on the phone I asked her to send a message to our doc and the hospital doc to see how things are. So I've decided, if I haven't already said here, I am going to stay home today. I may take Nannie (and Momo) out for a drive to go to the pharmacy and get some refills for us and maybe pick up some supper on the way back. But I won't push it, as it isn't urgent.

The Braves have a ballgame at 6 PM tomorrow night, so that's SOMETHING to look forward to,

The girl finally called me back; apparently she works nights, and I didn't know that. But I said that she wouldn't need to come over today to sit with them, as I am not going to the hospital today.

Breathe in.......Breathe out.....Breathe in.....Breathe out. Trusting in God to take care of what needs to be done with and about hubby.

Hullo. It's been a very nice day here, got up to 70. I went for a nice bike ride, then home to clean up the kitchen, start some laundry and have some lunch. dh brought home donuts, so instead of a nice salad like I had yesterday, I ate a maple bar. Oldest ds stopped by to return a ladder he had borrowed. My motivation has petered out. I feel just stiff and tired today. 

NSIME, that is great that hubby's doc called you. That what I dislike about hospitalists in that they don't know you or your family and miss that connection. It's good to have had a frank discussion about what to expect. If hubby is still confused, it doesn't seem like you being there will make a difference except to stress you out. And who knows, he may rally and clear. 

Joe, I hope your drive is pleasant and not too boring. 

Hi Tweety, Annie, Dianah, and TMB. 

I exchanged texts with hubby's daughter and she said "This is not a discussion  to have by text." I agreed. She thinks her Daddy will rally and get better. I half expect her to turn up here or at the hospital tonight or more likely tomorrow. She, I think, wants to 'prove' to me that her Daddy needs to have extensive PT and OT, etc. so he can have a chance to live. He still can't swallow anything liquid or solid. I told the nurse who called this afternoon that I was uncertain about  TPN; I don't want him to starve to death, but I thought it might make his dgt feel better that he will be getting some nutrition......Shrug...... and I will be consulting with his doc and the hospitalist and liver doc sometime this next week, so I can have more info. But our own doc said he doesn't feel like hubby will pull through. Hubby had so many chances to detox but was always non-compliant; took the pills WITH vodka! Two or three years of ignoring his symptoms and refusing to follow along with any program, didn't do him ANY favors.

She does not understand just how sick he is. The doctor and I both feel it's like it's already too late to bring him back around, and wonder which system/organ will start shutting down first.  Not sure of the amt of brain damage he might have, either. What is life with a feeding tube, (and routine lactulose enemas?) , bed-bound and reliant on a nursing home staff who are most likely overworked to the Nth degree. I won't do that to him.....MAKE him keep on living for his daughter's sake? No, I KNOW what he wants/wanted because we have talked about the 'what if's' many times.

I will not be arguing with her about any decision. I plan to consult with hubby's "team", but no, his dgt will not be allowed to attend that meeting with me, because it is not her decision.

Hubby always said she has stayed away from here these past 7 years and never offered to help with the house or Nannie, and it really pissed him off she couldn't give us one day off every couple of months She was a Daddy's girl for a long time, but her mother (now deceased) tried after their divorce, tried her hardest to get the dgt to strongly blame him, and stay away from him as much as possible. It REALLY hurt him when she did that. It wasn't until her own mother died....while intubated....that she started talking to her daddy every day. But talk is cheap.

I wonder if SHE would be willing to take on his care, or support an unending need for money to have him stay at a nursing home and be in a limbo of a sub-standard care? Is that her idea of a satisfying life? And even then she still wouldn't come over here but every so often to stay with him, if and when it suited her.  I understand she didn't want to let go of her mother, and it was a rude shock when the woman died while in the ICU. So naturally she doesn't want to let go of her daddy. The other day when we thought he might die, she was not averse to accompanying me to the funeral parlor I will use for him when he does die.

Now, I hope she is looking up all that's written about hepatic encephalopathy. But I honestly believe she is burning up the phone and talking to her friend who is an LPN. That woman was the one who made dgt think *I* should have recognized his diabetic crisis years ago. SO, it was all MY fault. Of course she had no idea that her daddy was drinking heavily then, and it was sort of natural for us to assume that his frequent falls were from the booze. So, if she hates me for the rest of her life, tough for her. I do not care. What I care about is my husband's ideas of what constitutes quality of life, and honoring his wishes.

Okay, I'm off of here now, unless something strange and remarkable happens. (!)

I love you guys on here. Thanks for the support.

G'day.

Work was busy, called two "rapid responses" and one of them went to ICU very sick.  Lengthy discussion with her husband as to how far he wanted to go.  He was going to talk it over with the son.  

I'm a firm believer in sometimes we have to not interfere and let nature takes its course.  My brother-in-law went through this when his mother had a massive stroke and couldn't speak or eat, and was paralyzed half her body in her 80's.  They decided not to put a feeding tube in her and the stroke soon took her.  One brother accused him of killing his mother.  He didn't understand the stroke killed his mother.  People want to be able to say "she put up a good fight but lost the battle" so they feel better about themselves and don't understand they tortured them until the end.  I'm not doing any of that to my parents.

I think your doctor is absolutely right, NSIME, that you are smart and wonderful and have a big heart. If the stepdaughter can't see that, it's her problem. 

A beautiful day today. And a productive work day. I do hate having to catch up with emails. I kept an eye on them while traveling but if they required much effort out of me left them for when I got back. Never heard from the air travel people about my bag so called them today (after striking out with the automated services). We shall see. 

Twin B wanted to try takoyaki (octopus fritters?) so the boys and I went to restaurant that serves them but they had sold out. Still has noodles and Spring rolls. I am stuffed. And broke (!) now.