Good thoughts for Pix and her dad.

I'm happy to report that mom's surgery went well yesterday ("beautifully" her doctor said) and she's at home feeling pretty good today. No call for follow-up chemo until she gets her 3-month checkup, but the post-op treatment measures were different enough from the last time to reassure me they weren't just doing the same thing and hoping for a different result.

I was puzzled by how much 7 hours of hospital waiting wiped me out yesterday compared to how I handle longer shifts normally, until I remembered I was doing it on maybe 2.5 hours' sleep. Yeah, that'll make a difference, particularly when you get there too early to buy coffee in the cafeteria. Today work was not fun, but at least I got to be the one notifying others about a late game heap o' problems and letting them scramble to fix them, rather than the reverse.

Hi. I'm here for the moment. X-post quickly just to say I'm so glad your mom's surgery went well, Matt.

I'm going to use the board as a bit of therapy and write out some of what's been going on here to try to process it a little. If hospital stuff freaks you out, I get it. I completely understand if you need to skip this one.

I hate not having another family member, especially Dad himself, to help me to make decisions right now. Because it isn't clear cut. It isn't as simple as "he's dying" or "he's getting better." It's a terrible roller coaster with no way to know what each day will bring. One symptom exacerbates another. Some doctors express true optimism that he's improving and his labs look good (the fact that no one can figure out the root cause of all of this is a big part of the problem), and others don't know if we will ever get him back. And Dad can't talk to me to tell me what he wants. There's no way to have a shared moment because — on top of his currently untreated dementia since he hasn't been able to take his pills regularly for more than a week — he's having hospital delusions (which the doc says don't resolve until someone is back home, which he can't be) and his words are still complete garbled.

I'm at the hospital from 8ish to 7:30ish every day because otherwise I miss doctors and treatments don't happen. He can't advocate for himself or even tell me what hurts or how he's feeling. In his confusion, he gets combative when they try to take his blood or — worse — change him. And he's strong. At one point, they had to put mittens on him because he was hitting nurses. He's improved since then but still gets very upset and fights when they do anything. I can calm him down, sometimes. Sometimes not.

This morning was good. He was bright eyed and trying to talk, and though he wasn't making much sense, he did say my name once and was happy to see a couple of friends who stopped by. Then I made the mistake of stepping out of the hospital for a couple of hours to finally get a massage and left local friend T. here to hang with him...and the first hour? Great. The PT came in to work with him (he can't even sit up on his own currently, but he at least got him to move on the bed a little, with support), Dad's friend R. stopped by and was tickled to see Dad so chipper, and things seemed okay. Then, when everyone else had left, T. witnessed Dad, we assume, having a seizure. She said he got lethargic and then went rigid, but it took a few minutes to get any help, and it was over by the time the nurse arrived. I really think he's been having little seizures the past couple of months. I think that's the weird head rush he's been feeling that kept leading to falls before this all happened. Anyway, freaked T. out completely, understandably, so when I turned on my phone (the first time I'd put it in DND in two weeks), there was a calm, but very concerned, text asking me to please come back right away. My back was in knots again by the time I got back to the hospital. I sent T. home and have been hanging out with him. Since then, he threw up the tiny amount of liquid he'd managed to drink earlier and almost aspirated again, so that was exciting. He's resting now. If T. hadn't been there, no one would have seen the seizure happen. I can't ask her to sit with him again. It isn't fair.

I don't know. From the outside, I know it might seem obvious, that he's gone and I should let him go. But it's not that clear cut (and please, I'm begging you, please, no one give me advice). So I am trying to take it a day at a time. My friend B. texted me one really helpful thing, though: "There’s no way to do this well or right or easily. You’ll do it how you do it and that will be right."

I'm holding on to that. Thanks for listening.

I'm so sorry, Pix. You are doing everything you can. You can't have answers when the doctors don't have answers. Trust yourself to make decisions because he trusts you, and I know you are doing the best you can as you ride this horrible roller coaster.

So nice to hear that your mom's surgery went beautifully, Matt!

Oh, Pix. That must be so hard.

I remember when DH's dad was in the hospital for what turned out to be the last time, there were theoretically other family members who could have helped but it somehow became DH's sole responsibility to talk to the doctor's and get the updates and even just that much isolation was really really hard. I'm so sorry you have to go through this.

Sorry, Pix. It sounds nightmarish.

Trust yourself to make decisions because he trusts you, and I know you are doing the best you can as you ride this horrible roller coaster.

This.

because otherwise I miss doctors and treatments don't happen

I was the advocate for both my grandfather and my grandmother during their hospital stints in the late '90s and early 2000's, and I hated having to monitor and correct what I felt should be simple stuff done easily and routinely by the staff, such as make sure the meds were on schedule, and make sure the empty-stomach meds and the with-food meds were done right, and the fluid restrictions were adhered to, and the BP was measured on the correct arm, and, and, and.....

The cardiologist did rounds at 6:15 a.m. sharp. If I was a minute late getting to the room, I missed him. Grrrr.

I can't ask her to sit with him again.

Pix, I hope that T. understands that she didn't do anything wrong.

Pix, I hope that T. understands that she didn't do anything wrong.

Oh she absolutely doesn't. She had to be the caregiver alone in the hospital for her mother and then two separate aunts, though, so it's pretty triggering for her. She's amazing in a hospital. It's just not fair to her to ask her to be there more than necessary.

Also, thanks, everyone.

Oh, Pix. This sucks so much.

I'm so sorry, Pix.