confusion & confabulation

Hi,

I'm really sorry to hear about your father's condition upon being diagnosed, the way things have gone so fast no wonder he's confused and confabulated. I suppose that being released to a sub-acute facility is a sign his condition is no longer critical and should be considered a good thing, but I also know what a drag it is to be moved around in a situation like this. I hope he is well enough to be home soon. The radiation treatments could help with side effects and shrink the tumor. If you are in the U.K.-where radiation is used as a bladder-sparing treatment, there are some interesting approaches used.

Is there a cancer center near home, where he will get treatments?

Good luck with everything and keep us posted.
Wendy
PS I'm moving this thread to the 'invasive blc' section, where I hope it gets more attention by those who have been in a similar sitation.

Thank you to both of you for your answers. Dad was much clearer today, which was good, and today was acually a family meeting with some of his MD's, which answered many of our questions.

I'm both of my parents secondary power of attorney (in Dad's case, Mom is first, in Mom's case, Dad is first). But I've been an active member because my healthcare knowledge is much greater than that of my parent's or my sister's. And the staff has realized that it is easier to talk to me and explain to me, as well as my mother understanding that she develops a selective hearing at times.

Our family meeting today proved very helpful, and very frustrating. I had already had a list of his meds, and the only possible sedation meds were a low dose fentanyl patch for back pain/stomach pain, and a PRN order for haldol that was only supposed to be used in severe confusion. Today I got the fentanyl patch discontinued (Dad's pain isn't that bad - he used motrin at home), and requested benadryl if he can't sleep, since they were only giving the haldol at night IF he requested something to help sleep.

So while I felt victorious over that, the next thing they went over was the fact that they want to discharge my father to a short-term rehab, either tomorrow or the day after. So, was changing the meds even worth it when they're already planning his discharge?

They also informed us about his treatment options, which have apparently changed. His tumor has not grown since his diagnosis, so no mets, which is good. His tumor is large, it encompasses his entire bladder, through the muscle walls. Essentially, his entire bladder is now made up of this tumor. My Dad is no longer a candidate for chemo, until his confusion is completely clear, since he may not be able to verbalize some of the more dangerous side effects. Which leaves only radiation at this time. The main plan is 30 treatments over 6 weeks. And they'll hopefully be able to arrange them closer to home for us all. And there's still possibility of some chemo within there. Surgery however has been cancelled as an option. The oncologist stated that right now, my father's cancer is the least of his problems and that going under the knife to get the tumer out would kill him. Dad's liver isn't the best, and neither is his heart. And all of the ativan they gave him when he was majorly sedated during his ICU stay hurt his already scarred-liver, so he's been having liver issues. Plus, the nephrostomy tubes that we learned today are now permenant. So their goal is to attempt to "control" the tumor, versus shrink or take out the tumor.

All in all, a bit of a tough day. I thank you both though for your advice. We did have neuro consult when he was in ICU, and neuro deemed him "unresponsive" at the time. all brain MRI's and CT scans have been negative. and Dad's confusion issues before generally lied in the fact that he's an engineer and has an engineer's way of thinking. Certain abstract ways could confuse him. And I have been the pain in the butt family member that I hate myself. But I also know from my own experience, that it's the noisy bird that gets the worm.

Well, I'm off to attempt some sleep. Sleep is far and few these days. Thank you again!

I don't have an answer for you, but my first thought is have him evaluated by a neurologist. You may get some answers, plus you'll have a physician involved in his care who will put your father's mental status at the top of his list

Shannon..if anyone has medical power of attorney in your family use it to get ahold of his medical records....the "sedation" they're using to calm him down could be the culprit. I personally had the same thing happen with my father after a botched bypass surgery and he was being given all sorts of hallucinagenics. When he was transfered to a re-hab hospital none of the doctors agreed on his treatment...i specifically having the power of attorney asked them not to use any "calming drugs"...no percadan, percocet...absolutely no halodin.....but i'd read the chart and sure enough they were giving it to him. Check his drug list for starters. When so many people are in charge of treatment unfortunately you're the guys who have to be vigilant. Has he had a PET scan or doesn't your hospital have one? Also how far up did they do the scans...did anyone check the brain? My father actually went on trips and told me all about them and of course the entire time he was in the hospital bed....you said he"rarely exhibited confusion before"...does that mean there has been some in the past..just not this extreme? That may be a key element to start looking elsewhere with the scans. I only say that because my father a very intelligent man had been having some episodes prior to his hospitalization but he was smart enough to cover it up...i think because i was around him the most i was the only one to notice it. Just a thought. I do hope i'm way off base here but it doesn't hurt to check. And i know how you have to fight to get them to do it.........but be a pain in their butts and do it. I know thats against the nurses creed....but its your family member. Don't let those docs intimidate you. And most of all get medical power of attorney . Good luck to you........Pat

Hi... very new to the site and finding it informative. So I'm wondering if maybe, someone else has any ideas for my family.

My father was dx with a large BT at the beginning of June (late stage 2-early stage 3, we were told s/p an unsuccessful TURBT), and had just started the oncological process that would eventually get us to a neobladder and chemo (per the urologist). We had the appt set with the oncologist, but then my Dad went into acute renal failure (his BT is blocking his R ureter) and ended up in the hospital on July 1st. Since then, he's been confused and delirius. At first, it was attributed to the electrolyte imbalances from the backup of urine. But then he had 2 nephrostomy tubes placed and his labs came back to baseline. He was sedated for a while because of his agitation when he was confused. He has since spent 2 weeks essentially sleeping in ICU, where his moments of being awake were nowhere near lucid. He did aquire an infection, and he's been treated with IV antibiotics. Now,he's back on the medical oncology floor, for about a week and a half, and he's fully awake, just "not always home". He has some moments of lucidity, but most of the time, he's in what I call "pleasantville". He's not sedated. not on any meds that would be causing this. His labs are mostly WNL, and so far, all MRI's and CT's have not shown any mets (thankfully!!!). He just... is random. He is confabulating beyond my wildest imagination. And the odd part is, he knows that he's confused and can tell you. He tells my mother that he's getting worse. He'll talk about a firetuck being in the bathroom and then state, "the firetruck is not really there, is it?". My mother and I are at a loss. On his good days, he's 60% lucid maybe? This is killing my mother to see. My father is only 55 years old. He has rarely exhibited confusion before or any kind of delirium. We've given him things to do to try to preoccupy him so he's not so bored. We're slowly incorporating a few select visitors that he's been requesting. We've decorated his room with pictures.

So I guess my question is - has anyone gone through anything similar??? Fighting cancer is new to us. My mother and I are both nurses as well, so we have too much knowledge to begin with, and neither one of us works in oncology. My father is in a very large teaching hospital where residents switch every 2-3 weeks and getting info is like pulling teeth. Dad is supposed to start radiation this week, and possibly chemo as well. We'd like to try to get his mental status back to normal before we give it a reason to decline again! I appreciate anything anyone can suggest that we could have overlooked.