Well. As choices go, that sucks.

[wordinista]

Okay, so.  After this post, I'm going to start f-locking things talking about Gramps because I realize that not EVERYONE is going to want to read about it. 

Just got back from Mom's, and we had an... interesting talk.  She's good friends with a nurse who has worked extensively with dementia patients.  From what she says, when the body is under general anesthetic, that can cause a spike in the dementia's progression.  This was why Grampa's behavior was so completely weird after his surgery in July -- he was exhibiting that spike.  And the bitch of it is, he'll come back a little bit (he's just starting to really be himself again -- since July), but the damage done while he was under the anesthesia is done.  There's no undoing the damage.  So he can come back a little bit, but he'll never reach pre-surgery mental levels.

Now, Grampa's urologist (who, let me say, is a complete dipwad for a NUMBER OF REASONS starting with performing the surgery in an outpatient clinic that he co-owns, all the way to not arranging for an in-home nurse to help with Grampa's after-care [translation: My mother had to be the one who kept the incision point clean and who changed his urine bag. THIS IS NOT ON.] HE DIDN'T EVEN SEND HOME AN INSTRUCTION SHEET REGARDING AFTER-CARE) -- the urologist wants to do another cystoscopy (note: dipwad either did not use enough local anesthetic or did not wait long enough for it to take effect, because my grandfather was in enormous pain during the procedure -- so much so that my mother could hear him yelling in pain from the other room -- and he remained in pain for three weeks afterward).  Now, if he does another cystoscopy and finds that the cancer has come back to his bladder, the doc is likely going to want to do perform another surgery.

Hopefully y'all see the problem here.  If he does go in for the cytoscopy (by the way, good luck getting Gramps to agree to undergo another one) and more growths are found, and another surgery is performed, we're looking at another spike in the dementia's progression.  And?  AND.  That part of the brain, as I understand it, also governs breathing.  So another spike in his dementia's progression could put him somewhere he can't come back from.

Given this, Mom's wondering if he should undergo the cytoscopy at all.  (Assuming he doesn't say "fuck that" and digs his heels in, refusing to go in or the cytoscopy, 'cause dementia or no, he damn well remembers THAT. And my grampa? Is TOTALLY the type to say "fuck that" and a host of other colorful things.)  I mean, do you save the body (for a little while, maybe -- this last surgery bought him three months) at the expense of the mind?  I can't condone that.  We're working so hard to keep the dementia at bay, it seems crazy to entertain the thought of a procedure that could very well push him past some point of no return.

I don't even know.  I'm not even sure there's any sort of right answer here.

Under my covers is looking really appealing right now.

Comments

[darkfrog24.livejournal.com]

I have an uncle who's been in care for many years now. Dilemmas of this kind are starting to come up for him. They're not easy.

What would be best for your grandfather's quality of life? Is the bladder cancer such that it would make his remaining time miserable or could he deal with it? If you ask me, brain trumps bladder.

[w0rdinista.livejournal.com]

Yeah, I agree with you totally -- brain trumps bladder, and in my gut I agree that his quality of life would not be improved by allowing the dementia a chance to progress unchecked.

[cyperian.livejournal.com]

That is *such* a tought choice. I would hope that if my mind started to go that my body would naturally be there as well.

Assuming that they do a cystoscopy and there is something to remove/fix, I wonder if there's a way to avoid using general anesthesia (I assume that's being completely out is what progesses the dementia). If they can do a local the way they sometimes do for C-sections and such, maybe it wouldn't cause so many problems? Speaking as someone who just had surgery while awake, it's just an option that springs to mind - and I wonder why it didn't occur to the doctor who is supposed to know the way anesthesia can affect dementia...

[w0rdinista.livejournal.com]

Well, as I said before, the doctor was a dipwad. And it was the same doctor that didn't use enough local anesthetic for the cytoscopy, did the surgery in an outpatient clinic, and completely botched the after-care, so I'm not sure Mom would even trust this guy to do another surgery (provided it was even necessary).

Dr. Pearson (aka "Dipwad, MD") probably didn't make any effort to educate himself on my grandfather's OTHER problems, unlike his neurologist, who, so far, is AWESOME.

(Funny -- so much of my grandfather's tangling with Medicare is what fuels my resistance to and distrust of govt run healthcare.)

[emrlddragon.livejournal.com]

There is sadly, no right answer. And no one can tell you what to do. I think it comes down to quality of life. Even if this surgery extends his life, would it be a life worth living?

And, remember, that it isn't just about him, but you and your mother as well. Can you handle taking care of him in the condition he's likely to be in after the surgery?

I don't know if it will help, but Newsweek did a great article on this topic.

http://www.newsweek.com/id/215291

I hope everything works out for the best.

[w0rdinista.livejournal.com]

Yeah, I know-- that's what makes this such a bitch of a situation. There IS no right answer. Me, I'd want my mind intact, even if my body started to go, and would probably opt just for pain management, if fixing my body meant screwing with my brain. And but I can't assume that what I'd want for myself is what someone else would want.

That said, during his clearer days, Gramps has shown moments where he's aware of the fact that his brain isn't working quite right, and I think it really troubles him.

And... I'm sure that's a great article, but I'm a bit too emotionally bruised to read it objectively right now. I know what's coming, and I know it's inevitable. My mother has extended his life significantly primarily through changing his diet depending on what seem like ever-changing nutritional requirements. But I cannot read about or discuss "end of life care" right now. I'm sorry. :(

[emrlddragon.livejournal.com]

I understand.

[vespurtine.livejournal.com]

I'm sorry to hear this. Decisions like this are never easy (in fact, a decision like this actually divided my family and they've never patched it up again) but I think the only thing you can do is try to consider what your grandfather wants, right?

In any case, good luck with it :(

[w0rdinista.livejournal.com]

Mom's going to talk with her sibs, but right now she is of the opinion that a cytoscopy would be a needlessly painful experience for him, since, if he DOES have more growths, she isn't sure she's willing to sacrifice his mental state to another surgery. And there's also the part where Dr. Dipwad didn't arrange for a nurse to come visit and clean the catheter insertion point, so Mom had to do it, and with Gramps being in a completely fucked-up place mentally, she also had to contend with him getting out of bed at odd hours (sometimes NAKED), wandering around the house looking for "a dance hall." And it took him three months to recover mentally from that. And here's the rub -- even if he HAD been kept in a hospital, he would've been put in 5-point restraints to keep him from getting out of bed, and he would've been discharged ANYWAY once he was physically better, regardless of his mental state.

Augh. :(