Medical update: the banality of horror · 8:54pm Oct 31st, 2020
This is what my nightmare sounds like.
"Please help me."
She lies in the hospital bed. If she sees anyone walking by the door, she calls out to them for assistance. She asks everyone for help, and then she can't explain what she wants help with. Unless it's the gown, because she's been adjusting the gown for days. Sometimes she works the ties and buttons every few minutes. She tells everyone she's too hot. But there's no fever. There's no cause on the basic tests, and they aren't doing anything beyond those. I just asked, because you, as one of her assigned doctors, finally called me for the first time in a few days and before I could talk about all of it, tried to say it was just advanced dementia.
No. Listen to me. Try listening to anyone. This isn't her baseline. She can dress herself, wash herself, cook as long as someone else sets the oven. She's at moderate. You don't fall into advanced over the course of seven hours. There's a background cause. Someone else told me it was a urinary tract infection: the test came up positive. Now you're telling me the test was negative. Talk to the people who gave me the first result. Tell me what's changed. Look for something else, because the baseline is gone and I'm the only expert on what it is.
You're letting her refuse her medications. You think she has advanced dementia and you're giving her full control over her own treatment. Explain that. I know she's been refusing them for a few days. The nurses told me --
-- right. You've been grinding up some of the pills and putting them in applesauce. Do you know what that really means? Once she pushes the applesauce away, you have no idea what she took or how much of it she got. She has myasthenia gravis and the hospital is stressing her. You don't know if she's getting her control medications. She can stress herself into a myasthenia crisis. Is that what you're looking for? Neurology thinks there's nothing strange going on, psych is indifferent, and both of them are on the verge of being horribly wrong. There's another cause somewhere...
Listen. Pretend you can listen. She was in a hospital a few days before I brought her to you. I thought it was a UTI, because she'd been going downhill for a few days and then she told me that she had a burning sensation when she urinated. So they gave her antibiotics and her mental state cleared back to baseline.
Then they released her. And the doctor there called me and said there had never been a urinary tract infection at all. That the mental state change was due to -- feel free to give me a second opinion here -- an overactive bladder.
I asked why that would respond to antibiotics. Never got an answer.
But she was back to baseline. For about eighteen hours. And then she plummeted. She would say she needed to go into the bathroom while she was in the bathroom. She lay on her bed and rocked back and forth, but that might have been the pain from the blood clots in her calves. New blood clots. Did you check her chart? Does anyone pass on information to anyone else? Because I know she's been refusing her medications, and I begged the staff to call me the next time it happened. I begged last night. Told them I would be up through all hours trying to work, and I would answer the phone. It never rang. Last night or this morning. She refused meds both times. No one called.
Before I brought her in to you? She was knocking on my bedroom door every hour during the small hours. She had to see that I was still there. And on the last knock, she was fully dressed. Overdressed, actually. Two pairs of pants. The second one had panties over them. So I got that off and the extra pair, and there were panties over the lower layer as well.
I... left those there. I needed proof of an altered mental state. That was kind of it. And when they got her undressed in the ER, they found two more pairs.
I kind of have a historical precedent for that sort of thing being a bad time.
Did you ask anyone about the ER? Where after four hours, she started fighting to get out? And I am not using a euphemism on 'fighting'. She took a swing at a nurse. At least one swing. There might have been multiple targets. I'm not counting myself, because with me, she was trying to kick. And scratch. The nurses raised her bed all the way up, then tilted it backwards so she couldn't get out. Raised the bed rails, of course. And that just gave her something to claw at. She tried to climb the angle. Stuck her angles between the rail bars and I kept pushing them back in because I thought she was going to break something. She broke something a while back and one of your doctors just casually mentioned it. New compression fracture in the spine. So thanks for bringing that up, because at least now I know it has to be treated --
-- listen. She was clawing her way up the slope. Over and over. For hours. She kicked at me, she told me I was a sick monster who'd never loved or helped her in any way. Also for hours. She called me Satan once. And the nurses gave her two sedatives. One was just for the CAT scan, but she ran away from that. In her gown, at what had to max out at two miles per hour. I'm not really sure the sedatives did anything. They brought her back, and... more clawing. More kicking. No one came in to help me, and then I poked my head out of the room and called for three pairs of handcuffs, some leather straps, and a whip. That got their attention.
It had been nearly two years since she had physically attacked me. Just before she went into the psych specialty hospital. Which is part of your network, by the way. Have you spoken to them? At all?
I had to leave the room. I was the agitant. But someone else had to be in there. And she wore herself out and fell asleep.
Your hospital admitted her.
I think the ER believed there was something going on.
I thought it was the UTI, because I was told the culture came back positive for bacteria. But the antibiotics weren't touching it. Then she stopped taking them, and I'm begging you to switch her onto IV medicines. Now you're telling me there's no UTI. Did you look at the right results? Was there a mistake the first time?
Because she's in the bed, calling for help. Adjusting the gown over and over. Sometimes she tries to take it off. Do you know how your staff is distracting her? They tie knots in cords and give them to her. She unties them. Repeat. And when she says she has pain, when she's begging anyone who passes by for help... it takes over an hour before a nurse comes in. More to get anything out of the pharmacy. And you say it's just advanced dementia, where she can't remember that she just adjusted the gown. What's the next excuse? That she isn't eating enough?
She isn't. The last full meal she had was in the ER. She devoured her lunch there. And since then... picking at everything. Her weight is crashing. I thought that was the UTI, because it kills her appetite. But you say there's no infection, no change in her white cell count, all the basic tests show nothing, you aren't going past the basics, and she's not eating. She hasn't had a real breakfast, lunch, or dinner in days. She has no calories to work with and she isn't getting any better. She isn't hostile now, but I don't know what kind of calming drugs you're almost giving her and...
...listen. Please. This isn't normal. She can't be discharged like this. She's a risk to herself. She tries to wander off. Physical therapy said her movement is good? That's... kind of a problem when she doesn't remember where she's going. I don't know if she can acknowledge obstacles. And I think you're going to give up soon, because you just decided all the basic tests are good and therefore it's just advanced dementia. You don't change stages that quickly. Something is going on: it has to be. It's your job to figure out what it is. And this time, it's your job to hear me, because I am the only person who knows what her baseline is and this isn't it.
You'll discharge her without an answer, or a treatment, or a care. And it'll get worse from here. I'll take her to another hospital when it hits a breaking point, because I have a lot of reasons to give up on yours. But you can still do something. Go beyond the basic tests. Look deeper.
Because this is the sound of nightmare. "Somebody please help me." Over and over. And she doesn't understand why it isn't happening, even when she can't vocalize what she needs help with. I listened to that for hours. She's frustrated with me because I can't help, and... I'm not a doctor. She is asking you for help. To figure out what's wrong, and bring her as close to the surface as she can still come.
It's been a few days in your hospital. I've been there every day. On the night she was in the ER, that was about fourteen hours.
I don't know how much longer you'll keep trying, or if you really tried at all when it sounds like you decided the basic tests are enough. There are things which don't show up on the basic tests, and... she's sick. This is a hospital. And no one calls me when she doesn't take her medications, she's going to run out of calories to burn, one of her many medical conditions is going to take the opportunity and...
She's sick, and you're a doctor.
Listen to her.
Listen to me.
Do something.
And you did something.
You talked over me.
You told me all about the basic tests coming back negative. Several times.
And then you hung up.
What happens when they try to discharge her but you just... completely refuse to sign anything? On account of it being clearly impossible for her to survive outside a hospital in her current state?
...Wait a minute. If nobody there talks to anyone, what would happen if, post-discharge, you just drive around the block and check her in for the same blatantly unresolved issues they tried to discharge her with?
Fuck. just, fuck. These doctors, just, can we excuse tossing these people off a four story building? Please?
I do not envy the mental anguish.
Hopes and prayers for you and your mom!
Imagine if she didn't have you.
I honestly don't know what I can say that would be of help of comfort, save that I'm still here, still thinking of you and hoping. Out of all the people I know (for the very loosest definition), you seem to be having just about the worst time (and that's not got, considering the dire straights, myself included), since this is so drawn-out and difficult.
It all sounds very much like to me that they don't want to admit they can't do anything (and that they don't want to deal with a dementia patient) and are trying with every opportunity to Make It Be Someone Else's Problem.
A pity, as I would very much like to Make It Their Problem, at rocket launcher point.
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As I understand it, I would file a protest. Medicaid continues to cover her expenses while it's resolved and she stays in the hospital during that time. Once the second opinion comes in, she's discharged anyway.
However -- this is mostly what I feel would happen, based on things I've overhead. I've never actually protested a discharge, so I don't know what the full and actual procedure is.
As for bringing her right back... after being solidly dismissed for the bulk of that phone call, I think I want another doctor. But I'm also not in the best place for making a call right now. Emotionally, I'm wiped out, and that has a physical effect. My head has been nodding forward slightly in front of the desktop. I skipped lunch because I spent all those hours in the hospital.
I don't want to try her primary facility again because that's where they gave me the 'overactive bladder' line.
I'm... running low on hospitals.
I could always drive her to the place which took her after the fugue drive, right? It's two states away, but it gives them a chance at a fresh failure.
Of course, driving across two states probably means I'd have to quarantine.
...I am very tired.
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I have. If she didn't have me, she would be placed in an assisted living facility and have people taking care of her all the time.
She would arguably be better off.
Pretty sure that you could easily win a massive multi-million dollar lawsuit for malpractice against all these hospitals and doctors. Maintain records of names, what's happening, what tests were taken and the results, your mother's issues and what her baseline is, etc.
I'm afraid that these guys are just going to kill your mother from their incompetence, and when that happens, after you've taken care of things, you'll be able to hit them in their precious wallets.
If “it’s the dementia” is all you can get out of them, demand a referral to a dementia specialist. Demand they get a consultation for you. An evaluation from someone trained to assess dementia.
If they are going to pass the buck, demand they nominate who they are passing the buck to. Demand it in writing.
I believe Brumby is onto a good point. If the doctors think it's just dementia then have them give her a referral. It might be the very thing to get her (and you) the assistance that is so desperately needed.
Damn! At some point you have to figure something is systematically off track at the hospital where she is now. Your best best might indeed be to get her out and bring her someplace else, not something you want to do smack in the middle of the third wave of COVID-19. Not to make excuses for the staff of her current hospital, but both they and anywhere you have her placed are quite likely running at the edge of their limits trying to cope with the pandemic while a good chunk of the politicians in power are trying to pretend it’s actually going away. A lot of medical staff are very afraid, and that is not a good situation for anyone needing medical assistance.
Just hang in there. The pendulum will swing back.
I hate to be the one saying it, but...
I think they're writing her off.
Hospitals hate patients dying in-house. In strictly objective terms, that's a "Failure" on their record, which looks bad on them.
They did this to my Grampa. It was only due to my mother fighting like a veritable mad lioness that they took him in the last few times.
When they do this, they try to either put the patient into hospice care or try to get them to go home to pass. The second is preferable to them because then they have literally nothing to do with it, á la (throws hands up) "Welp! They died off our grounds! Nothing we could do!"
The first time they attempted this with Grampa...three years before he finally passed, if I might add...it turned out that his state was due to the fact that he was taking a cocktail of medications that were interacting with the meds they were trying to treat him with.
Acknowledging the sheer level of incompetence and apathy it took (and still takes, from what I hear) for them to not look over his prescriptions and crunch the numbers to see if him literally being in a state of insanity due to drug interactions, it later turns out that he was taking medications for conditions that he hadn't had in over a decade.
Let that sink in for a good minute.
His doctor had been re-upping scrips for things Grampa had been cured of for some eleven years.
When asked, we got a nice, long rambling answer in Medical-ese from this doctor that basically amounted to "Oh, shit, you noticed..."
Needless to say, that doctor was no longer a factor in my Grandpa's care, and my mother raised absolute Cain and rained utter Hell on the hospital.
With utter politeness and without raising her voice, I might add.
I saw my dear, sweet mother whom I have never heard say a cross word reduce one doctor to tears in a completely conversational tone after said doctor told us that we needed to "make [Grampa] comfortable" in front of the man during one of his periods of lucidity.
If I may ask, Estee, is the possibility of interacting medications one you have considered?
Grampa was in a state very similar to what you are describing your mother being in.
When those meds finally got out of Grampa's system, he...well, he wasn't exactly 100%, but he was easily in the high 80's. Much better than before and he could hold an intelligent conversation.
Does anyone in RL have a way to contact Estee? Are any of you close? At this point I have a very bad feeling that things are about to go downhill fast. I am in the northern parts of the Midwest and can do nothing more then hope for the best. Our author needs some help and the local medical facilities are not being helpful. At this point I wonder if medical malpractice could be leveled?
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First. @$%^. Sorry. The usual worthless 'sorry'...
Second:
Some of her own doctors have suggested pharmaconfusion as a contributor. They've been trying to cut her medication list down, as much as it can be without crippling or killing her. I've been keeping an eye on what she's being given at this facility: the only real changes so far appear to be too much furosemide (which I did get a rationale for) and a mild sedative.
There's just one current problem with the pharmacy theory.
She isn't taking those meds. At most, she's getting partial doses. There's a chance she's as close to drug-clear as she's been in several years.
And if she keeps that up, it just might kill her.
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First. Sympathy and empathy are never worthless; it's what separates us from being overly-dressed chimpanzees who live in boxes instead of branches (though we still have the nasty tendency of throwing poop at one another, and not always metaphorically).
So stop saying that.
Thank you for being a human being.
You're better at it than most, and I include myself in that count.
Secondly...hmm...
I fall back on my "writing her off" theory. If push comes to shove, you may have to take her to that other hospital a couple states away and bite the quarantine bullet. Another alternative is to start hinting (read: blatantly and openly stating) that you might be contemplating legal action for medical malpractice. Sometimes that threat, even with it being toothless, is enough to light a fire under an ass or two.
Estee. You need a lawyer. Right now.
Also, for what it is worth...
I know that nightmare all too well; I lived through it, too.
For those of us who haven't...pray to whatever deity you may or may not worship that you never have to.
I know I am not alone in wishing there was more any of us could do for you and your mother than offer you a digital shoulder and decidedly-less-than-expert advice.
However, I can do one thing so you don't have to.
Anybody who is reading this, if you can spare a coin for Estee, there are links. They're too humble to ask for it much. Make a blog post, spread the word, tell your family and friends. Keep it tasteful and respectful, but do what you can. Forward an email, text it out, do whatever you feel is necessary.
We can't do much, but we can at least try and ease the financial burden.
And pennies can still shift the scales.
On the one hand, I do like Brumby's idea of getting some sense of direction in terms of "What now?" They shouldn't get to just say "Welp, that's another tick up the dementia scale, shucky darn" and not offer some kind of guidance on what to do in light of that. You are entitled to a second opinion; ideally one that can actually recognize you aren't just there to be medibabbled at.
On the other, I'm not sure if I trust anything coming out of the medical community in your area.
This is indeed a nightmare. I'm sorry we can't do more to help.
The phrase you're probably searching for is 'compassion fatigue'; at some point, the sick kind of blend together and you get what happened to you.
On another site, I claimed that the USA wasn't even in the top ten in medical care. A number of people, including at least one doctor, disputed that & claimed "We're #1"
All I can say to that is
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Then what is stopping that, if you truly think that would be better for her, which you don't.
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May I ask why you don't just put her in an Assisted Living Facility? Wouldn't that be covered by her Medicare?
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It wouldn't be instaneous, I don't think her baseline is far enough down to justify it, she would fight me all the way, there are reasons to be worried about getting a bad facility, and... I'm afraid that it severs the last links. That once she's removed from her life to that degree, there's nothing holding her back from the plummet.
Assisted living is not fully paid by Medicare. You need Medicaid for that. (I've been working on her renewal forms for the last few days: they're due on November13th.) Without it, the yearly cost remaining would be...
...let's just say my current income isn't going to cover it.
You're a good person and deserve better than this.
Good luck. I can't do much more than wish you well, but I do with all my heart.
Estee, seriously. I'm just catching up on Glimmer now, it's excellent, but you should definitely be documenting all this absolute bullshit these 'professionals' are putting you and your mom through. I can't even fathom how incompetent and cruel they are. Cutting you off after you've already been through so much shit? That doctor is asking for it.
As others have suggested, you might want to look into a malpractice lawsuit. Not for the money, obviously, but if there's one thing that will make a hospital treat a patient decently it's the idea of them losing money from it.
And also because at this point if there's any justice in the world you'd actually have a case considering how often, consistently, and long they've pulled bullshit like this on you, which makes it doubly scary.
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I still disagree with it being better even if you have done all the assets down that you have to do for that form of medicaid. Kind of ridiculous how little money they actually let you keep to be able to get full time care. It would be more humane to allow more assets. From what I have seen of the elderly at that point, they are just waiting for death and wanting for death more often than not. The quality of life in a nursing home is very very low.
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Have you decided on the point where such a facility is unavoidable? I know how you feel about them, but there will come a time when looking after your mother at home will do her more harm than good.
Please consider it. While caring for her at home may slow the decline for now, please be aware that there will come a time when it will make it worse. Be prepared for that, and don’t delay action when it comes.
My best wishes for your mother. Please take care of yourself as well.
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Okay, I was going to say that in that case, these hospitals are a Sweetbark looking for a Fluttershy.
Then I looked at Five Hundred Little Murders again.
I'm tempted to say they're more like the fill-in for Sweetbark.
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In the US, they can and will discharge patients into the street. If Estee doesn't come, they may just wheel her to a corner and leave her. If she's lucky, she may get a taxi home, but not always.
I can attest that this practice still happens.
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If I remember correctly, GroaningGreyAgony has a way... and that's, as far as I know, it.
And Estee... For what it's worth, good luck, again.
Oh, Estee... "sorry" feels woefully inadequate, but I don't know what else to say.
When my grandmother was dying, she lived with us, but at least she was lucid (except for when she was in lots and lots of pain). I can sort-of sympathize with the feeling of watching a loved one just... fade away, but for you it must be so much worse. I wish there was something I can do.
For what it's worth, I'm keeping you in my prayers.