confusion & confabulation

Hey there Pat,
Again, I wanted to thank you for all of your advisement. In times of illness, it's easy to lose track of which way to turn. All of your advice has been wonderful. And correct, as my mother and I found ourselves lacking 1 good solid physician to take my father's reins in regards to his overall medical care. He had an oncologist, a radiational oncologist, a primary MD thru the nursing home (whom we never saw, just communicated via telephone by the nursing staff), and a urologist who passed us along to an interventional radiologist for changing of his nephrostomy tubes. We were about to ask his regular primary MD to step in to manage. And his confusion had been getting lots better. We got the staff to only give the pain pills if he required them, versus scheduled. And we were taking him outside for fresh air, and even got him back online for a day! Last Sunday, I didn't find Dad to be confused at all. It was a nice change of pace to have my Dad back.
Unfortunately, Dad had other plans, and went into cardiac arrest on Monday. And following his DNR wishes, we had to let him go. Just the hardest thing I've ever had to do. It's now been the longest week of doing things I'm not ready to do yet. But now he has no pain, and now he doesn't have any nephrostomy tubes in. And no radiation. And he's enjoying friendships he lost years ago. And that's how I have to look at it, otherwise, I just continually cry. All of my time taking care of my father really made me a lot closer to him than I ever was. And now I don't have that. And in the end, all of the doctors we saw we right, it wasn't the cancer that killed him.

Geez.....talk about your catch -22. If your fathers liver is impaired that can cause waste products to build up in the blood as its not filtering properly and cause Dysarthria...inarticulation of speech.....and if his kidneys also are not functioning properly can cause confusion......then on top of that giving him MS Contin a morphine sulfate...thats got potential confusion written all over it. And we haven't even covered the enormous tumor in and outside of his bladder. I think you need to get a nephrologist consult...a hepatologist consult......along with a pain management consult...or all three of them should consult together...good luck on that!........and "medically unstable, not cancer related"??????????????????????? You know our medical system has got to change. I'm sorry i just find that so unacceptable. Your father has a lot wrong with him right now and someone has got to take the reins. There's got to be one caring doctor out there that will take all the symptoms into consideration and treat them instead of trying to mask them.
Hey 2mg of Ativan would have me out in about 3 seconds...!!! Pat

Hi Pat... Yes, they did check his neck and thankfully no patch! He's getting MS Contin now, and my mother wants it changed. We're going to call his new MD and see what they can do. I agree that there has to be something else. At least for this time being.

And yes, you are correct that there aren't planning on treating his tumor other than to "control" it. They do plan to radiate it, and hopefully it will shrink a bit, but it's very large, taking over his entire bladder, through the bladder wall. His bladder has essentially been taken completely over by tumor. The tumor is through the muscle walls. They're hoping that the radiation will stop growth, possibly shrink the tumor, and to stop the bleeding from the tumor. And if his confusion gets better without this waxing and waning, then they'll consider chemo.

My mother, sister and I are in talks about a second opinion right now, but it's difficult because of his confusion. We've had so many consults for his confusion, and we're sure it's the meds, but trying to get him a pain med that won't hurt his liver more, and won't hurt his kidneys (esp now, because he's been retaining some fluid again!) is tricky. And the cancer center we'd like to bring him to most likely won't accept him because the confusion makes him "medically unstable, not cancer related". Right back to where we were in the beginning. And they're reasons for not treating him are valid. If he's confused, he can't state side effects of the chemo that could potentially kill him. And he wouldn't survive the surgery, which I believe as well. But it might be worth a chance if he may not survive anyways.

And don't be scared of Haldol in the ER. We don't use it on everyone! I promise! Generally, it's for patients such as alcohol-induced behaviors and psych patients that are a danger to themselves or to others prior to having to physically restrain them. And it's usually a 5mg intramuscular injection once. It's not an everyday occurance, but when you have a patient that is physically violent and out of control, it is helpful, along with 2mg of ativan. And it's never given without a MD's order first. So I hope this eases your mind!

Did you check his neck? Thats where my patch was..just below the hairline in the back.
I'm astounded about the use of Haldol in the E.R.......As a pharmacology major and having worked in the industry many years I would never knowingly (key word here "knowingly") allow anyone in my family to get that drug. If i ever have to go into the E.R. again i'll make sure i have a sign on my chest saying NO HALDOL...allergic!!!
I know your father needs pain control and its a kind of catch-22 situation. My father got completely dependent on Percadan and made up all kinds of excuses to get it....and he was really (like me) a Jeckyl/Hyde when he took it. By the way he was a Pharm M.D......and really knew his way around drugs. When he was finally baselined it was amazing ...suddenly he didn't have any more pain. He never asked for it again.
I know your father needs some pain management and i really hope they can find something without the disorienting side effects. It sounds like they are not going to do anything about the tumor am i correct? Have you tried a second opinion.......If nothing else perhaps radiation would give him some comfort. I wish i could offer more.........Pat

Thanks again to you all. For the first time since his diagnosis, I don't feel so overwhelmed.

Dad was moved to short term rehab today, which is right around the corner from home (well, his and mom's home). So he's happier, and Mom's much happier. We are attempting to control the meds. Of course, Dad's not helping because he's requesting pain meds, even though he states he's not in pain. His reason is that he's been getting pain meds which has deferred his pain. We did get the haldol taken away. As an ER nurse, I'm a fan of Haldol in short term usage. I wasn't adverse for them giving it to him when he was very agitated and pulling at his lines. However, he hasn't done that in weeks. It's difficult finding an appropriate pain med for him because he does have legitimate pain. His pain was controlled previously by motrin prior to all of this. His urologist had him stop the motrin prior to his TURBT, and afterwards, he had severe back pain due to his acute renal failure. He can't take acetaminephen products because he is in moderate liver failure. So he generally needs more of an opiate based pain reliever (as the MD explained it) but more of a short acting one. And he's fentanyl free as of this moment. Even though he doesn't think he is. His nurse tonight and my mom searched him over head to toe several times and couldn't find any patch. Which was good since I had asked for it to be d/c'd yesterday.

And according to Mom, Dad's confusion was a bit better today. I had to work all day and I'm working tomorrow, so I didn't get over to see him. (I work 12hr shifts, so I typically eat, sleep and work on my work days.)

Wendy, I'm in the US. And we have several cancer centers within our state. The hospital he was discharged from can and has offered to do his radiation. They're about an hour away from where he is. Another cancer center is in my little city, which is about 25 minutes from Dad.

Again, I'm so grateful that I found this site, and grateful to have had you all respond. And thankyou for all of your thoughts. It's so helpful to have other hands stirring this crazy pot around.

Shannon.......really Haldol?...Honestly that should be a last resort drug...do not let them put him on that ......its an antipsychotic which just is a crummy excuse to give him to induce sleep. It can cause Tardive Dyskinesia which is not reversable ....hallucinations....my father actually saw his entire dead family floating across the room, was eating imaginary sticks of Juicy Fruit Gum, and actually broke a nurses nose because he thought he was being held captive.
Its a horrible drug. And if you happen to have Lewy body dementia which is what my father was diagnosed with you react exactly the opposite to the antipsychotic drugs.
As for Fentanyl i can only relate my reaction to it....I saw all sorts of people who weren't there....heard conversations in the next room....was sure my husband was having an affair with the nurse.....I'm a Jeckyl/Hyde on drugs!!!.....
So i would definately baseline him on the drugs and watch him improve...if he does have some sort of early dementia at least you will recognise where you're at and where he's at. Find the doctor that will go along with you on baselining him. I did...a great psychiatrist after they had actually put him in an Alzhheimers unit. The difference was amazing...he could function again...he had lost all of his short term memory but could carry on a very intellectual conversation...just couldn't remember he'd had it. He was able to move to an assisted living facility and have some quality of life instead of being in a wheelchair doped up on Haldol sitting around a reception desk.
Fight for him Shannon. Best wishes.......Pat