“Professionals.” · 12:20pm Mar 21st, 2019
Today was supposed to be her second colon polyp removal.
She’s been in a care center for a while, being watched after a medication adjustment. She was also supposed to be receiving physical rehab to rebuild her strength, but she’s been refusing to participate in most of the sessions. The Medicare-covered days for that will run out soon and afterwards, it would be a co-pay. Of $350 per day. I originally told the facility that if an extra few days made the difference between health and relapse, I would cover it, but... right now, I would just be paying for her to not participate. So I was going to speak with the administration tomorrow about arranging her checkout.
I don’t like the facility. I can’t say I like any of the three I’ve been to along this endless downhill road, but this one found a way to make an exceptionally poor first impression. They have a guest WiFi network and on the first day, I asked for the password. They told me that only one person knew it, none of them were authorized to give it out anyway, and that person wasn’t available. I still don’t have the password, and that’s how they regard the wishes of their guests. Imagine what it’s like for the residents who want to know about the world outside the walls.
It didn’t encourage me to trust them. And with that second procedure approaching... well, there’s a lot of prep work involved, isn’t there? Thirty hours of controlled diet and laxatives. I couldn’t picture them getting it right, and...
Even before this, I had been begging the hospital to take her on the day before. I did the prep work for the first round, and I failed: about fourteen ounces of laxative mix went unconsumed. I stayed awake the entire night, pleaded, went down to my knees, nearly forced... and it didn’t matter. There was still some fecal matter in her bowel. I couldn’t see doing any better if I had to run it again, because she doesn’t listen to me. So I begged the hospital, over and over. No response.
Monday, I took the train there, because I didn’t even have the prescription for the laxative and with no word, it felt like the care center would be doing it, unless she was released to me first. (She wasn’t.) Why the train? The car broke down as I was pulling out of the care center on Saturday. Broken axle: it’s fixed now. (No airflow and it’s stalling out at stoplights, but it runs.) I needed someone to tell me what was going on.
They were admitting her the day before the procedure. About one in the afternoon, which meant I had to hope the care center could at least keep her on the clear liquid diet for breakfast: a single slip ruins everything. And they hadn’t told me because they only made the admission decision on the week of the surgery: that was policy. No one had told me that either.
Yesterday, I signed her out of the care center: they told me there had been no early issues, and we’d all searched her room for food on the day before. She was aware of what was taking place, and... not much else. The slide accelerates. She sleeps far too much, doesn’t always respond when spoken to.
But I got her packed, loaded into the car. Admitted, and they let me sign for her because in their opinion, she couldn’t do it for herself. Taken up to the room. No paying for TV this time: I’d brought magazines and an active screen was just something to sleep through. She hasn’t even been watching the set in the care center.
Kissed her goodbye and left. She was being taken care of by professionals and with the car running, I needed to visit her radiologist. Picking up pre-surgery scripts for the second spinal jack in April.
Home. Tried to push the stress back, work a little. Or a lot. The phone remained silent, and a chapter went up. Bed, and I barely slept because I’d just finished writing and I often don’t sleep well after. But I also had to be up early, trying to outrace rush hour. She would be transferred to Endoscopy at 8:30. Procedure at about 10:00. Unknown time for polyp removal and coming out of the anesthetic, and then back to the care center.
Trying not to get stuck in traffic, because every complete stop was a chance to stall out. Reached the hospital, got to her room, found her asleep in the chair. On an IV, staying hydrated. The cleanse is hard on the body. I didn’t try to wake her. Went back into the hallway, and the nurse who spotted me destroyed everything.
She had refused the prep work. All night. The first dose had initially been refused at five p.m: the second half of the split was denied around two in the morning. They hadn’t tried to coax, beg, or sedate. They had just let it happen, and so all she’d had was a single eight-ounce glass during a thirty hour prep time, about an hour before I arrived.
No one called me. No one let me know there was a problem. No one said anything at all.
But that decision was made by professionals.
I’m writing this in the cafeteria. (War Journal was written here.). I told the nurse I would be here for a while. They’re trying to decide what to do. If they’re keeping her for another day, trying to reschedule for tomorrow and giving her the chance to refuse that too. If they’re just sending her back to the care center. If it’ll be next week, next month — all sorts of calendar chances at never.
The polyps (some flat, some pre-malignant) will stay where they are.
I’m the only person in the cafeteria right now. Everyone else ate and left. I may get to watch the next shift come in, or I could just move to the oncology resting room. Someone can call me when a decision is made, assuming they remember how phones work.
I said something on Twitter recently. That every day is the worst day and because the slide moves downhill, it’s still better than what will happen tomorrow.
She has the next spinal jack scheduled for April 11th. That doctor wanted to move the surgery up, and I refused. I wanted her to have some time away from hospitals.
It’s a lot of tomorrows away.
It makes me wonder if it’s enough time for a crash.
I know there’s a bottom. I just can’t see where it is.
Literally no one living deserves this. :( Hang in there.
*hug*
I really, really am hoping you do find some hope. If you have any, cling to it, no matter how far-fetched it is. You've got people here who are thinking good thoughts of you and for yours. I think I read a lot of what you are going through with some of your latest writing. It shows. It's an unwanted adventure with a happy ending far from reality. There's a lot of uncertainty and it carries from your life into your work.
I understand. The waiting. Dealing with people who fail to understand the stress you are under or how badly you think they are doing their jobs. They con't communicate because it's usually because they think someone else will do that bit of work. It's always someone else's responsibility.
It is a hateful thing to stare in the face, but stare into it you must. During the wait, you must endure the feeling of helplessness, not knowing where to turn or who you can talk to. You just know no matter what is said or done, the end is coming and you hate it.
All things must come to pass. I'm sorry if I'm rambling, but I just hope you know you are not alone. This happens to all of us and in the end, we must support each other in times of need. My heart bleeds for you. Please understand I know what you are going through.
There are times when you have to seize the golden moments of graveyard humor.
She woke up. She told me, either in lie or delusion, that she’d done all of the prep work. And I got to tell her that nothing was going to happen because she was, quite literally, full of shit.
Dear God, Estee, please hang in there :( We're all here for you!
An extremely charitable take on this is that they're trying to keep you from worrying by not letting you know about any complications. If that is the case, I can only assume that none of the people involved in that decision have ever been in your shoes.
As ever, we're here for you as much as we can be. Here's hoping the professionals clear their own colons of cranial obstructions.
Update: current plan is to try and make her drink a nuclear-grade laxative in the hopes that it can clear her out in time to have the procedure during business hours today. I am, put mildly, dubious. It may get rid of the bulk, but it doesn’t feel as if it would flush out the colon walls — and they still have to make her drink it. It feels like the best possible result is a partially-obscured view and having to come back for a third round — but it’s not as if I’m an expert on laxatives.
I asked if anyone had tried to get someone from psych/faith consulting to speak with her when the refusals began. The current shift couldn’t say what, if anything, the overnight group had done.
Getting ready for what might be a very long day. The care center is expecting her back around 2:30 p.m: if things stretch out long enough, I’ll call them about an hour before that.
Aiet, I know a thing or two about inter-shift mix-ups. (hint, it's the other shift's fault) This reminds me of my poor uncle, a new problem always discovered in the process of fixing the last one. At least your mother still has her stomach...
It sounds trite, I know, but I'm praying for you. And if you ever need something, ask.
This sounds like borderline malpractice.
How does one become nominated for sainthood, again?
As usual, nothing more I can say than before, other that I'm still here, still hoping for the best it can go, and listening - because if absolutely nothing else, I CAN do that for you.
*salutes*
Fingers remain crossed.
The rehab nursing home places they put people in after the hospital are in general horrible for actual care. My experience with my mom when she was in one for a short time was decidedly negative.
5031014 Soo... We're going with "Hey, Mom. I brought you some gummi bears. They're sugar free." (You would want to sort out the red ones though. They don't like you having anything red before that particular procedure. And make sure you have a lot of water available to prevent dehydration.)
If you keep detailed enough notes and documentation of all these ways in which you have been let down by (or felt screwed over by) these medical institutional systems, I cannot help but wonder if it can it be shaped into some kind of quasi-Jungle muckrakery-thing that can be submitted to hospital management as feedback. Of course that is a difficult decision because it involves.... loss of privacy. I'd understand if it was unpalatable.
I mean, technically, "professional" just means they get paid to do it, not necessarily that they're good at it.
You continue to be pretty amazing, but I'm sorry you keep getting opportunities to demonstrate these particular facets of it.
Good luck.
Reminder: the herd is united behind you.
How the fuck do they even keep their jobs if they can't even get a patient with such an intense procedure to follow the pre-op? How can they avoid punishment or termination for failing in their literal job description of ''''care''''?
Sorry. It's probably a really hard job, dealing with people who just can't cooperate and you have no real way to communicate with them and there's legal considerations I'm sure. But it just really makes me mad that Estee has to be the one to bear these consequences, suffer through even more stress, and they couldn't even take the time to make a call and let the relative know that their facility failed to follow the procedure before they have to learn it in person??
Fucking christ, if you can't trust the care facility, where is there left to go? I hope things move forward in the most bearable way possible Estee. I really do hope you can find something to hold on to and hang on. I'm rooting for you.
Just got home.
Results? Total failure. My suspicion was correct: six hours of speed cleanse didn't make up for losing the other twenty-four. They brought her into the procedure room, they started her on anesthetic, and then they stopped because the area was, put kindly, fogged. Or packed. 'Occupied' works. And upon waking, she decided none of it was her fault, then declared that she never wanted to do it again.
'Never' is tomorrow at 7:30 a.m.
Her doctor talked her into it. (Of course, dementia. So in the time since I left, she's likely talked herself out of it.) Told her how worried he was about one polyp, that he had to get it out. Talked about having gone through several cleansings himself, understanding how much they wore you out. Made a temporary connection. And so she's still in the hospital, going through more prep work. Enemas have been added. They're hoping for a clear view by morning.
Assuming she cooperates this time.
The care center was called. Because she will have been out for a full twenty-four period, this doesn't count against her Medicare rehab days. (Yes, I asked. I still have to move her out soon, but this extends things slightly.)
After a day in the hospital of living on cough drops, I made the mistake of (unknowingly) picking up one of the world's foulest pizzas, plus the additional error of not tasting it until I was several miles away. And I was so hungry as to still eat some of it or rather, choke down. The rest may go in the trash, just before I head out to have my stomach pumped.
...nah. I'll just hope for vomit. After all, the caregiver is the one who never gets checked into the hospital...
5031199 My personal best for worst pizza was a Wal-Mart pre-cooked ready to pick up box. I trust them, because their frozen generic pizzas are not that bad, if you pick fluffy crust and something not 'artisan' in any fashion. Turns out I would have been better off eating the box. I have an *extraordinary* stomach. I almost never throw food out. 3/4 of this one went straight into the trash can.
5031194 My sister-in-law works at an elderly care facility. It is a thankless position, with flack from patients, family, fellow employees, government overseers, et al... The hardest thing is the endless line of patients passing by. Some come in, get better, and go home, but they will be back, until they don't go home any more. I could never work there. I thank God that she was with us when my mother passed away last year. Our whole family is soft-hearted, non people-persons. We're not huggers. She kept us together, and she does it every day at work, even when she has to run into the facility in the middle of the night because one of the staff just didn't show and quit without notice. And she's still a hugger.
5031153 (I didn't know this until a few years ago, because I can't eat sugar-free anything) Sugar-free Gummi Bears have Lycasin as a sweetener. A dose of fifteen gummi bears has about forty grams. (and nobody stops at 15) After eating 40 grams of laxative, certain things happen fast.
5031233
5031153 (I didn't know this until a few years ago, because I can't eat sugar-free anything) Sugar-free Gummi Bears have Lycasin as a sweetener. A dose of fifteen gummi bears has about forty grams. (and nobody stops at 15) After eating 40 grams of laxative, certain things happen fast.
I’m also on an all-natural sugar diet (yay low-FODMAP 🙄), and found this out 2nd-hand from my ex. They can’t/won’t eat gummy bears anymore, after an experience with a tub of the sugar-free variety as a teenager.
I am capable of eating just a few of anything, but I have no natural appetite and nothing tastes the same after the TBI, so I’m not normal (says the person who’s eaten the same dinner for a week and will make more of the same tomorrow, because it’s easy).
5031233
Yikes. One more reason to avoid sugar-free foods like the plague.
5031048
Perform at least two miracles if I remember right
5031194
I have worked in the medical field. And I can tell you the reason why they fail at times to make a patient do her preop: fear of lawsuits.
You would be amazed at how many family members are quick to sue when their uncooperative or combative relatives are restrained, force fed, put on IVs, or any number of other things that could legally be done for the patients own good as well as the safety of the employees. We always dreaded elderly, inebriated, drugged out, or extremely young people just for that reason. Yes I said kids....you would be floored at how strong a child will suddenly become when they are terrified of getting stuck with a needle.
It's very hard and unfortunately yes it can come across as incompetence but because of how quick family members are to call their lawyers physical restraint is always the very last resort and done very rarely. And in the case of a dementia patient....well most times there is just no reasoning with them, no amount of cajoling that can be done, but again....can't adminster laxatives via IV.
It sucks but you have our litigous society to thank for it.
5031372
Two documented miracles, and you must be deceased. The miracles are determined post-mortem, e.g. Thomas Aquinas was elevated to sainthood on the strength of the Miracle of the Pilchards. Thomas Aquinas was laid sick, and his caretakers encouraged him to eat. He requested fresh herring. A salted fish vendor happened by shortly, and had somehow packed a basket of fresh herring!
The other miracle is, upon having found a tooth had grown in such a way as to prevent speech, he prayed and the tooth fell out.
Apologies for being morbid, but: the day before she dies.
Afterward, she'll be dead, but at least the nightmare will be over.