Update

It's been a while.

I sort of posted a what's up post in January.  My Mom spent the last of December and the first third of January in the hospital, and I extended my stay for almost two extra weeks.  Evidently, getting someone into a skilled nursing facility ("snif") over the holidays is pretty impossible.  But we finally got her transferred to her prefered place, a place she has life-care with.  

For the first few weeks, we hoped she'd actively do physical therapy and be able to stand up, walk to the toilet, and back, which was the minimum to go back to her independent living place.  She refused physical therapy, mostly, though, and that didn't happen.  

My amazing brother and I started talking about moving her stuff out of her apartment in March, but we both work full time, and live a plane ride away, and so, we finally got that done this past month.  (We--well, my Mom's accounts, managed by my brother--started paying double rent in April, I think, so that was ouchie.)

Between then and now, my brother has pretty much visited every second or third week, and I flew back at Spring break, in early June, and in late July.  My brother--did I mention he's amazing--has done a lot of the heavy lifting in arranging for things to be taken to a consignment place, getting furniture to relatives who wanted it, and so on and on.  

Our Mom's living the life no one really wants: sleeping mostly, unhappy, not really in pain but not always super comfortable, bedbound unless the staff gets her up (which they do).

Before my most recent visit, which was planned to coincide with my brother's visit so that we could do the final moving stuff, Mom had a thing and was hospitalized again, so my brother flew out a few days early, and I flew as planned.  

My Mom had a tube through her nose down into her stomach to drain it to try to clear a blockage, and it looked uncomfortable.  She didn't want it, but they put it in.  And at some point, she pulled it out, so they put it in again, put her hands in mitten-things, and restrained them so she couldn't pull it out again.

Which is when I appeared.  My brother and I had a meeting with her "team" who said that they could probably take the tube out, but then what should they do if she couldn't swallow (which, I guess, is a thing that sometimes happens to people who've had these tubes), because to feed her she'd need either to swallow herself, or a tube down her nose, or a tube surgically placed in her side, or IV, which has to be specially done for long term.

They'd asked her, and she didn't want surgery or tubes and wanted the tube removed and the mittens off.  And my brother and I concured.  (We're very lucky that we had these discussions a long time ago before they were too painful, and we're all on the same page.)

Anyway, they pulled the tube and we were allowed to give her ice chips for a while, and by the next morning she was willing to eat (if someone fed her), mostly soup and mac and cheese.  (We knew her favorites from the previous hospital stay.)

And the next day, they'd detached the IV (but the vein was still accessed), but she was still in the mittens.  So we talked to them, and said we were willing to take the risk of loss of access if they took out the IV, so that they could take off the mittens.  So they did that, and we took off the mittens, and life got a bit better for my Mom.

And then we had the harder discussion:  what to do if she got another blockage?  Take her to the hospital, do another nose tube in hopes of resolving it.  Or not.  She shook her head vehemently: no hospital, no tube.

And we agreed.

So, that's that.  For now things are stable, but they won't be forever.  

She's back at her nursing facility, and unhappy, mostly bedbound and so on again.

Sometimes she's scared and upset, and I have to tell myself that it's the dementia (which is off and on, and more confusion than total memory loss, except for short term memory).  It's horrid to talk to her when she's most scared/upset, and know that there's really nothing you can do to help.  Even if I were there, it wouldn't really help.

She talks about being scared that she won't see me (or my brother, his kids, etc) before she dies.  And at some point, that will inevitably be so.  But I can't really say that.

That's been a big part of my life of late.