Another update
It's been a week and a half since Paul's surgery, and according to the urologist and post-surgery blood tests, the stents have not had any impact on the state of his kidneys. So he's getting set up to repeat all the scans, and if no improvement is detected, they will remove the stents ... and we'll go through the surgery all again, only backwards.
They left the catheters in for a few days after the surgery, and I knew it was going to be bad, but didn't know how bad. His memory is kaput (Parkinson's dementia) and the meds from the hospital apparently lingered in his system, so he was really out of it. Kept getting up and trying to get to the bath, dragging the catheter bag on the floor behind him, saying he had to pee, and falling. Trying to pull the catheter out. Etc. etc.
Our caregiver stayed with us Saturday and handled him pretty well, but when she left he got even worse. He fell three times Saturday night, and I did not want to call paramedics as they'd put him back in the hospital. I probably should have, but he hates hospitals so much, I couldn't bear it. First time, he was dead weight ... I am so weak now, I sometimes can't pick up my purse, let alone my husband! Took me 45 minutes to get him from the floor to the bed.
I read on this forum that global twitching is not characteristic of ALS, but Saturday night every muscle in my body was firing, from feet to scalp. (And for all the lurking BFS "Benigners" out there who are bothering to read through all this, yes, it is very annoying!)
Sunday, I stayed in bed all day with him so I could stop him from getting out (and because I couldn't move). Still, he tried to get up as soon as I left the room, and fell twice again ... and got mad at me because I couldn't lift him! (As we used to say, "Heap good woman, pull plow.") I could only get his top half on the bed the last time, and told him he was on his own, I had to get on BiPap and rest. He eventually got his legs up himself the last time.
He is emaciated. Down to 108 from his normal 140, and will not eat. I take him a demitasse cup of Resource 2.0 every hour. I can't afford a caregiver 24/7, but our caregiver has agreed to come 7 days part time, and stay a couple hours later each day, so hopefully he'll be asleep when she leaves. He won't consider a PEG (why not?!?!? jeez, such an easy solution), so this week, I'll be scouting out legal pot. For him and me!
One of my case managers said he may have to have restraints, but I can't stand the idea of that. On the other hand, what else can I do to keep him from eventually breaking a hip or his neck? I think we will both have to go into a nursing home ... him to have professionals keeping him safe from falls, me to make sure they treat him kindly.
Meanwhile, our PCP put in a referral for hospice care for both of us, and I've fielded a couple calls from the hospice in question from people who could not comprehend the notion of my speaking over a computer. I was not able to make them understand a single word via DynaVox. This does not bode well ...
The thought of going through all this again if Paul's kidneys don't respond in order to take the stents out is mind-boggling. But at least I will have the caregiver 7 days. I am still too wiped out to do much but play on the computer, nap and carry tiny cups of Ensure to Paul. And I lost 2 more pounds this week, 5 altogether since I got the tube. :-( Probably all the twitching burned calories.
Oh, yes ... Paul has started slurring words and sentences occasionally. I know Parkies can get the same disarthria (slurred speech) that PALS and stroke victims do, so that may be a sign of more progression. Or it could be a sign of mini strokes. I am not going to worry about that. I'll report it to the doctor (we see the kidney guy Tuesday), and let him do the worrying.
And my favorite kitty got hit by a car and killed last Sunday night.
Not a good week.
(Rose ... that's the prettiest photo yet! Glad you're back!)