Tuesday, August 1, 2023



I'm going to apologize because 1) my proofreader is in bed and 2) I have no working brain cells left.  Do you know that I had to actually go back and read the last update I posted here and then look at our One "Happy" Year entries to see all of the crap fest that has gone down since?  It shouldn't be more than "spent as much time with mom as we can" and yet...

I don't even know where to begin.  So I guess I did update at the end of Friday's link post that she had been moved to a rehab facility.  The goal was to attempt to get her strong enough to stand/walk a few steps so she could shift to a small porta potty next to her bed to be taken care of at home.  I told myself I'd give that place two full days after the disastrous intake to turn their shit around for her healthcare POA's sake because they wanted to try that route.  I totally understand the angle but I was skeptical even if she did somehow get good rehab.  When they IGNORED me pushing her call button for 25 minutes when she was in pain that her meds were not relieving.  The Mr was walking up to the nurses desk and the nurse said "I don't know why that room is ringing.  They have their pain meds, they don't need anything" and she knew who the Mr was so there was zero giving a shit that she had no intention of checking on either patient in that room which is a HUGE violation of state law.  Because of Mom's health status, the facility basically put her on the 'shrivel up and die' rotation, didn't give her water to drink (she's unable to just grab water whenever she wants and they knew that) so they accelerated her kidney failure in my opinion as her output dropped significantly, gave her bedsores after ignoring explicit instructions to adjust her every 2 two hours and we feel only because there was a camera in the room did they not do anything worse to her.   We were called to say our goodbyes despite the fact the nurse let us leave when we were standing outside her door when she took the vitals that caused her to make that call watching her on camera.  I was heart sick that she was going to die in this broom closet and that is no exaggeration.  The Mr can attest to the appalling room.  It was a horrible night but one that brought some closure, as much as it can.  Then came the kicker.  

There was a point she was in more pain than usual so I called the nurse and an aide came.  I asked for her next dose of pain meds and she was gone a few minutes then came back.  She said "I told (insert bitch's name here) the kids are asking for the next dose of pain meds and she said "but she's going to die" and she said but the kids are requesting that."  I looked at her in stunned silence and said "so we let her SUFFER?!!  She's had these vitals before and has made it here so yes, GET HER MEDS."  She said "I understand, you've got one mama.  You protect her.  I'm just telling you what I said and what she said" (she said it twice) and came in for a hug.  I said terrified "so what is happening??  She's in pain."  She said "she's got a trach to do but then she'll be down."  Lady, you could've friggin' led with that but I think she told me what the night nurse said because she knew there was a camera in there and wanted documentation without losing her job.  Under the surface, I'm boiling with anger and tell the Mr to go tell the POA what was said and then again to make sure they understood I think I was told what was said because she thought it was appalling and cruel herself.  They gave her meds and I told her I would see her tomorrow and I said "I *will* get you home."  The next day I got an update that she was eating a few bites but also stated in the very few words she had available that day that she was upset she wasn't home yet.  Overall, it wasn't a terrible report and we were just glad she was still here.  Then we got there.

From the time we came in around 2pm, she was in constant pain just wincing and it was about managing her.  There was no hello or hug, it was just her in pain she hadn't had even 2 hours earlier.  I went to the nurses desk to check on what meds she was being given and told the Mr to stay with her because she wasn't to be alone.  The nurse gave me attitude and said a doctor wouldn't review this information for 2-4 days depending on when he was scheduled to come in.  I watched her write down the complaint and said "that's it.  Nothing else for pain."  She stared at me blankly and I had to walk away before I lost my shit on everyone.  I got back to the room and the Mr had been asking Mom what hurt so he went through different body parts and she shook her head yes for chest.  He asked if it hurt when she breathed and she shook her head yes.  He said 'let's call the squad."  I had him confirm with POA but I knew she wasn't staying there one more day.  They asked if they're allowed to do that and I knew from about 2-3 other people including a friend here that you could so we did.  We were unsure if the EMT's would take her but thankfully they did and we got her back to a hospital.  We grabbed all of her crap from there in record time and met up with her there.

What ensued was 8 hours of pure hell.  Her pain meds were no longer working and there is not a single person with a heart I would ever wish what she/we went through that day.  When your mother is screaming in pain, clawing at herself, beyond frustrated without the ability to speak her thoughts, riddled with anxiety and yelling how much pain she's in and there is nothing you can do to comfort, help or soothe her...it is a hellish nightmare.  NO paid meds they gave her were working.  An anti-anxiety med that usually put her to sleep and calmed her?  Nope.  I mean a heavy duty pain killer too but her adrenaline was so high it was stronger than anything they were throwing at her.  We knew it was time for the big guns and it wasn't until 11pm when they mentioned Dilaudid and finally got that going through her 45 minutes later that she got any relief from the pain she'd been in for almost 11 hours at that point.  They admitted her as we made it clear she was not to be released back to that hell house and we could finally theoretically sleep that night knowing she had actual care.  The next day, we were not prepared for the state she would be in from them switching her to other pain meds.  Every breath was accompanied by a small to large moan.  It was clear she was getting no rest.  I thought they would keep her on the Dilaudid but this was worse because was she trying to communicate?  Was she still going through that checklist to get her home?  (Which later she started doing and I told her I was doing everything I could to make sure she got home.)  

She's been moved back to the palliative floor and the nurse said she has days.  I'm not surprised but my motivation is to get her home where she can pass in peace and not under this constant stress of hospitals and the hell she has been put through in 30 days.  I do not know how in less than a month the plan went from 'save her/give her more time with chemo' to 'please don't let her suffer anymore' but here we are. 

Selfishly, I don't want to let her go.  Don't leave Mom.

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  1. My heart aches for you all. I pray you are able to get your Mom home and that she gets the peace she so deserves. Love to you all.

  2. I am so so sorry. If she is in hospice, they should be able to transport her home same day. Keep in mind that hospice only stops by once a day so someone in her house will be responsible for care.
    The hospice people you can call anytime to provide you answers on everything. They also can advise better on the progression of her journey.
    I pray she is home today.


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