Hello, I wanted to continue the discussion on another thread about Remoran from 2019, but the thread is closed now ... I'm not exactly sure that is helpful to people seeking support and answers!
My mother fell while walking across the street and hit her head on the curb, the ER released her to an elderly rehab clinic to spend a bit mending up.
She was doing great about three weeks in and we all thought she would be released soon. She was cracking jokes and talking about family issues no problem. She is a bit "simple" and seems to have very light signs of memory issues in general, but other than that, the term "dementia" is a bit far past her state for anyone who knows her.
Randomly after being in for 3 1/2 weeks, right when she was looking to leave, she started getting really slow and slow, literally over night.
I asked if she was given drugs to calm her because they were not reacting well and she has a history of reacting very poorly to anything psychoactive: alcohol, coffee even. She doesn't even like the way advil makes her feel. The staff told me she was on nothing but Metformin, so I went down the rabbit hole of brain fog cased my Metformin (which I still believe is the root cause of much of her recent memory hiccups).
It has been almost a week of sobbing and getting no answers while my mother very suddenly stopped being 100% coherent, she can barely speak, and each breath is a whimper out loud and she just keeps saying she doesn't feel right and is dizzy.
Well I just spoke to her Doctor's NP (who is not at the care facility) and she said that actually she has been on Remoran for the exact amount of time as her sudden decline. The NP aslo told me that Remoran was only an appetite booster, and that *sooooome* people have shown drowsiness.
Upon research I find that in fact Remoran is indeed very much like Benzos!
Her entire situation this last week has been 100% caused by this drug! Now, the staff is labeling her unfit to make decisions! But they are drugging her and telling me that they are not!
I wanted to simply discuss Remoran on the thread that has been locked, but since I had to start this one, I decided to share those other details.
In the last month they have turned her into a slobbering mess and are just keeping her longer and longer. I'm very afraid to challenge them as I am across the country for at least the next few weeks ... my aunt and uncle are nearby, but they only allow ten minute visits because of COVID, and the staff has been telling me for a week that they will look into it, but it has been a week of horror, and none of them are returning calls or taking this seriously.
If my mother wanted to give "Power of Attorney", she was perfectly clear enough to do so just last week, now they are saying she can't respond on her own behalf.
I really worry my mother has been forced into a very bad situation that the facility has caused and is perpetuating.
What can I do?
The Remeron was initially prescribed to stimulate her appetite and it did just that. My mother had been dropping several pounds a month and the Remeron stopped that. It did not sedate her.
The Lexapro was added because she continued to have some periods of agitation and weeping, wringing her hands and being quite distraught. These 2 meds, along with a pediatric dose of klonopin (a benzo) when she had what I would call "breakthrough anxiety) kept my mom calm, happy and alert.
All of this took time to figure out; she was fortunate that the NH had a talented geriatric psychiatrist who prescribed these meds, kept in touch with me about how mom reacted to them and adjusted them accordingly.
It's not ridiculous to think that your mother is also having a reaction to this med she's taking, but without POA, you are powerless to order her to be taken off of it. Call her doctor/NP and express your concerns! Advocate for your mom and request that she be taken off of this drug to see if there is a general improvement with her cognition levels.
"The facility" hasn't 'caused' this situation with your mother; the doctor has to prescribe a medication before the nurse at the SNF can dole it out. So you don't have an issue with the SNF but with the DOCTOR. Once the doctor discontinues the script, the SNF will stop giving it to her. SHE, however, can refuse the medication herself. Is she able to do that, do you know? She can definitely say NO and that's the end of it; nobody can force her to take anything. If the facility is denying they're administering any medications to your mom, well, that's a horse of another color. Again, the doc or the NP is the one to talk to first and foremost, with a follow up call to the DON *Director of Nursing* at the SNF you're mom is currently at.
I hope you can get all of this sorted out; I know how tough it can be. Sending you a hug and a prayer for a good resolution.
first let me say I am AMAZED at this forum! I see some really wonderful sharing of information, and I was nearly in tears seeing these replies so quickly! Obviously many of you have been through similar, and i am getting goose bumps right now even typing this because that is such a beautiful to know how much people can care and share, these times have seemed so bleak with people not helping each othjer out in the world, and it is incredibly calibrating for me to see the goodness in all of your hearts right now. i can't even begin to express my thanks! <3
So i finally spoke with her Social Worker, she got me approved to be a contact because she was actually lucid today. The POA thing might come shortly, but for now at least i am glad that i am verified as a proper contact to advocate for her!
The story seems to have been passed through so many people with so many different perspectives, that every single detail shared in this thread was in fact exactly what was going on. The practitioner only had a couple days noted on Remoral, and originally said therefore it couldn't be that. When I told her the only reason I knew about it was from a few days prior, she seemed a bit angry, and wanted to get to the bottom of who may have done that, but then she ENTIRELY agreed that this was in fact the day she also noticed a decline, and that she previously wasn't aware of that, which was making the topic bascialy be ignored. She agreed to stop remoral, and focus more on bedside observation to address appetite. my mom has been cloudy, but has said every day that they keep taking her tray away because she was eating too slow, on her charts, it just said that she keeps refusing meals. If my mom is telling me she wants to eat, and THEY are telling me she is incoherent and refuses them ... then it is obvious that she does in fact WANT to eat ... so the NP agreed that it would be of no consequence to stop Remoral. A side note is that my mother didn't know she was being given that, and when told she was kinda funny in how she grumbled that she was now miffed that she wasted 5 days feeling like **** when it was probably that drug all along. That was a nice moment to hear, because it meant she is actually very aware of the fog she is in.
She was treated for a UTI a few weeks ago, but the NP said she thinks it might still be there considering how my Mom presents currently. So they are checking her blood and urine as we speak.
Since she originally came in for a fall, it is possible she might have some bleeding or trauma still, and an MRI at the ER would be an option too. This came up only because she FINALLY understood that indeed my mother's reaction to the drug was certainly at the very least adding some fogginess.
I guess my Mom didn't take the pill last night, and today is the fist day since they gave it that she actually sounded like she's coming back to the awake world. She even joked about being a Zombie coming back to life. Which made me cry very happily.
All in all, Remoran seems like it *CAN* be useful in many cases ... but it certainly can cause some very basic adverse effects in some folks if attention to details are missed.
She was seemingly just about to leave a week ago, and even the NP agreed that it was strange timing. So let's hope a large part of the recent decline was temporary and only due to that! <3
These last few days have been Hell, and mostly due to fractured communication between departments and due to just the mechanical nature of modern healthcare. I'm glad to finally get some traction with multiple people seeing the same details moving forward.
This has been the root of most of what you all shared here, and it is incredibly appreciated that such a community and focused forum exists, I can't even express my gratitude in words. I hope you all have your own situations stable, and i hope to continue helping others as you have helped me here.
God Bless! <3
I am so glad you followed up to say "THIS IS NOT MY MOM. I fear the fall resulted in internal bleed in brain or something; this just isn't her. Now medications are complicating it further."
I am so relieved that the social worker got you already communications privileges so you can act for your Mom.
Welcome. I hope you will keep updating us. So concerned for you and for her. Old nurse here, so I saw things like this happen.
i will indeed certainly keep coming around and hopefully chip in where i can as well! :D <3
(Ah, I see that I posted on the old thread you have referenced)
i did get them to try stopping the meds before she gets too accustomed. it is REALLY good to know that there are others who have experienced it getting better after a bad start though. If she does need to go back on it or similar, it really helps to know that this can change for the better! <3
Try elevating your level of contact.
Don’t keep talking to the same level of contact if you are not getting a helpful response/explanation.
Ask that she be checked for a UTI.
Has her weight increased? Is she eating better?
NOTE: If you found your closed post, you might copy and paste the link to your new message, then others can easily find it to get the background information you wanted to include.
I did a search for Christo and also looked on your profile and didn’t see where you were following any other posts. Did you change your forum name?
Re the NOTE:
Here is the old post I mentioned: https://www.agingcare.com/questions/has-anyone-had-to-give-mirtazapine-remeron-to-a-dementia-patient-445340.htm
It wasn't my post though, I was simply trying to add a reply to it when I started this account today, but the thread is locked. <3
Yes, Remeron is used to boost appetite, and as the case of ANY drug, your mom could be having a serious reaction to it. I was given ONE dose of Paxil, many years ago and I began hallucinating---12 hrs passed and I came 'down' from the serious reaction, but wow, it scared me!
Mom does NOT need Remeron (or perhaps ANY tricyclic AD) right now.
Don't rely on aunt and uncle--YOU make the phone call and get the answers. The longer mom is on this, IF this is what's making her deteriorate, it will not change until she is if off of it.
Some of the most significant effects from various drugs often come from the tiniest of interactions. Without experience, most people would dismiss that idea. So thank you for sharing!
I made a concise reply at the bottom seeing as there were many replies i didn't expect. Thank you again! And I hope your own situation has gotten, or is getting better! <3
What is important here is that SOMEONE get through to the facility ordering doctor that this is not the woman who entered the facility and who existed independently before her head hit the curb. This is a major change for her. They may not know that. There may have been head injuries? Did your Mom have any workup after her fall or any scans. Withdrawing the drug is fine, but it may not be the final answer here, and there needs to be an investigation into what happened.
It is not a good thing that you don't have the DPOA, and apparently no one does? Who is the facility in contact with?
If you are next of kin and are soon in the area then the important thing now, if your Mother is mentally incapacitated is to get yourself some rights to act for her and take care of things. Contact their social worker at once. Often they can make a phone call to a Judge and get temporary guardianship assigned so that your Mom can have representation. If they cannot you need to see an attorney to get temporary guardianship. You can move this to permanent if needed. It will be easier with a social worker's help.
If at all possible you need now to take family leave and be there if you are able. That is to say that if there is anyone who can act for her now, that needs to be done. Do you even know if scans were done after her fall. Because it sounds like something happened then. I sure agree with withdrawing the drug to see if that helps. I will be surprised if it alone is the answer, but not terribly surprised, and it is a good first step.
It's important to make sure it is understood by staff that what they are seeing is limited ...
*THIS* has been the crux of the situation, and in turn is now the method of communication that is the key to changing it.
I have now communicated to all the various Departments with this approach in mind, and they are actually responding now and all agree that it is good i pushed the issue, because they wouldn't have noticed.
I made a more general follow-up below. Oh, and as far as the MD communicating before [POA?], I am now approved by Mom and Social Worker. The staff didn't breach any privacy per se, I am just pretty clever as well as quite convicted to find out what is right, so 90% of of the info was by deduction and comparison. Your advice to be very proactive is 1,000% on point. Thank you so very much for the detailed reply and concern!
It is sometimes used as an appetite stimulant and also as a sleeping aid. It sounds as though your mother is having an adverse reaction to it.
What are the qualifications of the folks doing the prescribing? I would have a consult with a geriatric psychiatrist arranged.
She may need a different class of med altogether, or the dosage and/or timing may need adjustment.
Having said that, I do really appreciate your feedback! I also was asking who the qualified prescriber was, and sadly, they were lacking in correct records on her chart. I'll elaborate below to cover the full follow-up, but you are entirely correct that she needs a different med, and that a GP is in order. It seems she was given the Remoran whithout correct prescription, and only a few days later they recorded prescribing it, but it was already communicated a couple days before that from another staff to my Aunt that she was given it ... so I'm not going to go down the rabbit hole of poor choices by staff, I'm just glad the conversation has finally started to fill in with details. And your points about administration are exactly where we are now with it. Thank you so much for caring and replying! It really, really means a lot to know that people have experience, AND that people care about helping each other! <3