updates and checking in

pookabera

Hi everyone, wanted to say hi and post a few updates since today is a wonky one over here.

My mom has officially started her new job (still working from home) and I'm going into the law school twice a week for work. We've hired Brightstar so we have a sitter coming in the days I'm not here during work hours so my mom can focus on her job. It's not a perfect system, but I think it's an improvement, maybe possibly.

BMs and the BM regimen and maintenance are the #1 medical issue we're navigating (as it's always been, really). As my dad's body weakens, it's getting harder for him to push. We've stopped using the bedside commode because he's not able to stand up on his own, and trying to maneuver him, keep the commode steady, and hold him up is unrealistic. He's up to 5 senna a day and 1 colace and I think it's going to need to be adjusted or have something added in, because things are just not moving smoothly. Concerned about impaction, obviously. Really don't want him to be in pain like that.

Communication is getting more and more difficult. There are some moments/days with more lucidity, but for the most part it's a struggle. His severe hearing loss + his inability to focus + general confusion makes everything about ten times more difficult.

Today has been a trip and a half so far. I got to my parents' around 8:45am and by 9am he was sitting up on the edge of the bed and cussing. I thought he was using his urinal but he was trying to take his shirt off. Said he was hot, I suggested he leave it on and I cool down the room by opening the door. He wasn't up for that. I checked in with my mom, turns out she's not gotten much sleep the past few nights because he's been active throughout the night (that had largely been addressed with his seroquel, but we may need to readjust the dosage). By the time I turn back around he's getting his pants off. He snapped at me about "college" (mumbled words and confusion).

Then he's getting his Depends off and I have to really get down by his face to get him to focus on me so he can tell me what's going on. He said something about "How am I supposed to ??? They said ??? Get to school ??" None of this really matters, what matters is the agitation and delirium, so I reassured him that he doesn't have school today and that helped a little.

He's also been taking his teeth out, which is only problematic because he forgets how to put them back in.

I tested his urine with a UTI test strip and he's positive for leukocytes, negative for nitrites. I've been in contact with the hospice team and they advised me of what to keep an eye out for and to let them know if there are any other changes. His nurse is visiting tomorrow for the usual 2 week check-in.

He's sleeping now, so I can get some work done and my mom can hopefully catch a nap.

Apart from today being unusually wacky, I do think we're seeing more decline. Just feel like we're in this waiting period between whatever this is and "The End". Doing our best to keep him safe and comfortable while also taking care of ourselves.

As always, thanks for reading my rambling. Appreciate you all dearly.

M1

Ask your hospice folks about Miralax (polyetheylene glycol). It softens the stool by increasing water in the gut, can be a big help. Start with 1/2 a capful mixed in water or juice once a day and work up from there.....generally much more effective than senna-based laxatives or Colace.

mommyandme (m&m)

I was going to mention Mirilax (we used the generic). My mother complained of BM issues (constipation) as long as I can remember. When I began getting involved with her care, her caregivers gave it to her regularly. After I moved mom here with me, it was continued. Every evening with her dinner, she’d drink it in her water. She didn’t know about it, well when she didn’t know. It was a staple in our journey and she barely ever had constipation problems which was a relief for me, and her of course.

Thanks for your update!

SusanB-dil

Hi Pookabera - thank you for posting update. Glad you got help via a sitter. Yes, any help is appreciated.

GothicGremlin

Just feel like we're in this waiting period between whatever this is and "The End". Doing our best to keep him safe and comfortable while also taking care of ourselves.

I hear you @pookabera

You're kind of where we are. It's a tough place to be, for sure.

I'm seeing your post a couple of days after you posted it, so I'm hoping all of you have been able to have a couple of quiet days since then.

P.S. Yes to Mirilax

times2

My dad won’t go on a bedpan (as we appear to be finding out) but he can’t stand up to go to the bathroom either. It’s distressing him bc he still has control of his bowels most of the time and he knows he’s not on the toilet. I’m not sure what to tell him to help him relax but he won’t stay on the bedpan at all even if he has to go. I’m probably going to have to “force” the issue and give him a suppository tomorrow if he doesn’t go…😔

ButterflyWings

https://alzconnected.org/discussion/comment/197806#Comment_197806

Sorry if I missed this, but is he able and willing to use a bedside commode (chair with bucket underneath)?

times2

https://alzconnected.org/discussion/comment/197880#Comment_197880

Unfortunately his legs won’t support him anymore. We only had success using an apex lift in the hospital once. I’m not sure we could do a stand/pivot without one of the 3 of us getting hurt…

The hospice nurse did order a Homer but it was late Friday and I suspect it didn’t get processed yet.

pookabera

https://alzconnected.org/discussion/comment/197775#Comment_197775

Yes, we did. It seems like we get a string of quiet days and then a nice of flurry of chaos to keep things in balance haha