Day 150

Day 150
Monday October 21, 2013
I'm skipping over the weekend because there was nothing in particular out of the ordinary going on.  Saturday was quiet; Sunday DSS and crew were here.

Last night we both seemed to sleep well.  He had some of his usual coughing and wheezing, but not enough to wake him up or get me up during the night.  Around 6:20, just after I got up, I heard the bed rattle a bit so went to check on him.
He was, as he frequently is at some point in the morning, slid way down with his feet hanging out of the space between the rail and footboard.  I walked over to the bed - and realized the floor was wet.  I tried to ask him why ... and all he could say to me was complete jibberish.  At that point were the first stirrings of panic.    I started checking .. and discovered his dialysis catheter had been CUT!!  Now I'm into full blown panic.  HOW did he manage that???  There is a pair of scissors on a table ... but I seriously thought it was out of reach.  And totally weird to have gotten hold of them, cut the tube, and put them back on that same table.  My guess is that somewhere deep inside his mind he knew the tube was keeping him from getting up so he eliminated it and knew he'd get "in trouble" so put the scissors back.  I don't really know.  But the dialysate fluid was just pouring from the machine and from him.  I cut the clamp off the tube and wedged it onto the catheter as best I could.  The firs thing after that was to get him out of that sopping wet bed.   
I  alled the kidney center first, but it was too early and they said call 911.  I called hospice and notified them, and I called 911.   While I waited, I got him as best I could into dry clothes.  He was so wet, even that was hard to do.  
When the EMTs got here, they did a good evaluation.  At that time he was able to talk (although when asked his age he said 39).  All vitals checked out fine, and he was able to do the things requestd to check for stroke.  They gave me the number for a country medical transport if I had to get him to the kidney center.

By then it was after 8:00, so I called the kidney center again.  The lady this time told me to call EMS back and have them transport him to the hospital.   That really upset me - the idea of hospice was to keep him comfortable at home.  But this was not a hospice isse.
But, a few minutes later the (new) dialysis nurse called me back (the switchboard lady had notified him of my call).  He said he can come out here and put a new clamp on the catheter, and also give him a dose of antibiotics.  
So right now I'm waiting for him to call back to let me know he's on the way.  He had to get to the clinic, work out a break in his schedule, and get the necessary supplies.  Meantime I got a sterile gauze pad soaked in the cleaning solution over the end of the tube, including the clamp, and then clamped that down with hemostats.  
After the EMTs left, in between making and waiting for phone calls, I got a shirt on him and took him to the recliner.  I asked him something .. and he was babbling jibberish again.  Only, he seemed to know it now.  He was trying to answer me and couldn't make the words make sense.
Something is clearly very wrong.  I don't know what, and the EMTs found absolutely no sign of anything.  They did say he could have had a "TIA", which wouldn't show up.  In his case, any little thing will make the dementia worse.
He is sleeping (fairly peacefully) in his chair.  I have laundry going, and trying to do as many of my normal morning things as possible.  
And I'm trying very hard not calm down, but I don't think I'm succeeding very well.

Oh, and I forgot to say .. right in the middle of the EMTs here (ambulance in the driveway with blinking lights) .. the neighbor rang the doorbell!!!  I really hate that doorbell now.  The lady and one of the girls (to translate) wanted to know if he was "fine" (apparently that's the only word she knows).  I know they meant well; but at the time, the last thing I needed was someone else wanting to come in and interfere.  I sent them away, said come back later. If it had been a close friend, or family member ... or maybe even someone who spoke English .. I might have appreciated them coming by just then.  It'svery unChristian of me, but I can't help it ... I just do NOT want her barging into my house and trying to insist on helping when we can't even communicate.

Follow up (2:30 PM)
I'm feeling just a bit abandoned now, at least by hospice.
The dialysis nurse came out, repaired the catheter and gave him a doxe of antibiotic.  DH slept soundly through the entire procedure.   After the nurse left, he remained in the recliner awhile.  I got his his (late) morning pills, but had to actually put them in his mouth a few at a time.  He was able to hold his drink and swallow the pills.  He still can't make correct words, other than yes or no.
After awhile he got agitated.  He couldn't tell me what he wanted, but I finally figured out he wanted to get back in bed.  That was an ordeal .. he does not seem able to help me lift him (he usually puts his arms around my neck and holds on; today he had a hard time getting his right arm up, and couldn't really "hold on".  I did finally get him on the bed - not sure he'll get off again except when DSS can help!  (I had dried the bed and got clean sheets on it).  

I waited for the CNA to come, about 1:00.  I explained it all to her.  She's actually completely LPN training, just waiting to take boardds - so I knew she could give a good judgement call.  
She saw what I was concerned about: the speech and the right arm weakness.  The odd thing is, he actually can respond to the "stroke questions".  She got him all cleaned up.  Then she called the nurse (that I had still not heard from) ... and was told the nurse would be out here Wednesday.  Hmmm ... totally no sense of urgency or concern there.  But Wednesday is his once-a-month clinic appointment.  I will call later and leave her a message that we'll be leaving the house by 11:00 (she actually usually comes earlier than that; but I will need extra time, plus help from DSS, to get DH ready to go)
The CNA told me that since there is no apparent sign of infection; and if he had a stroke or a TIA there's no indication (and nothing can be done anyway) ... it very well could be that this is just a natural progression of the dementia.
My concern is, usually there's something to trigger a suddenn drastic change.  

A short while ago the dialysis nurse called to follow up and see how he's doing.  I updated him, and he is going to try to get up with the nurse (something the previous PD nurse didn't seem overly interested in helping with) about home EPO shots (oh, that's why he called, DH's hemoglobin is low again, so the shots need to resume).   He (the nurse) did point out that is it possible that the current issues are either directly (delayed) or indirectly related to the fall last week. I don't understand why this would show up so drastically 3 days later - but I do understand how in a dementia patient a bump on the head could be a catalyst to his condition declining.

He's sleeping, but not all that peacefully.  He keeps moaning off and on.  He says he's not in any pain, but something just isn't right.  I guess all I can do is wait.  Our regular CNA will be here tomorrow.  If his general condition hasn't improved by then, I'll be wanting to hear her take on it.