I know only a doctor can answer this. The hospice nurses told my mom that her brain would start playing tricks on her (end stage COPD). Ativan flipped her into a paradoxal reaction.
So, she has been "sun-downing". It actually though reminded me of when I had my own nervous breakdown. The hours between 4 and 6 were horrific for a solid year afterward. My throat would just start closing up. I remember walking the hallways at work and I would feel the vice-grip start and "ignore it and it will go away" would sing-song through my head. And so this whole thing is kind of confusing me.
As you can guess, the hospice nurses point out the diff between delirium and dementia at this stage is six of one and a half dozen of the other. It just doesn't work like dementia though. She's remembering everything. So it's not like you can go, Ah, we'll just stay here for the night then head home in the morning" and hope by morning the normal mom would wake up with no memory of the night before. I mean, she might. But she probably won't.
Between last night and today she clawed her way out of it, as she described to me. She says she hasn't seen me in the past few weeks, and today and last night were the first time she's seen me in awhile. "Oh my god, you have to take me to a psychiatrist!" she says, looking horrified. "What has been happening to me?! It's okay I'm here now!"
I spent part of the night curled on the floor by her feet, crying pretty uncontrollably, "Yes, but you might not be tomorrow."
She called my brother and we talked about it (he lives out of state but has been up to visit last week.) She made a recording on the cellphone Stating her name, what was happening in her head, that this recording is to remind her. Then she started drifting again. "Are you heading off again?" She nods. Then after watching a little more TV she starts telling me about all the things that need to be "brought home". The fact that she went into the apartment bathroom today? That told me she was actually here. After the initial "snap" she has been flat terrified of the hallway and the bathroom and I"d had to bathe jer in the bathroom and use a commode.
I am being torn in half. I can't bear this. Our family line does have history of nervous breakdowns / pretty nasty "spells" of disconnecting from reality for a bit that can take a few weeks or even months to drift back from. Usually as doctors go in our cases they just label it anxiety and gave benzos. It was ativan, I think, that triggered her ... whatever it is. So that's not a good option for her to claw her way back using the same med that threw her off the cliff.
But I .. at the same time I guess it really doesn't matter what it is. Doctors aren't like Karl Jung who is going to sit around puff on his pipe and talk about shadow reintegration and the like. They write scrips for haldol instead sight unseen. (which I have in the house. Mom knows its here too, and she's like, oh, that stuff is very strong. I told her it is only to be used if she becomes 'a danger' and she hasn't been as she's been drifting up and down the lane of from -here-to-there - that the nurse told me to not use it when she saw her after the really acute period.
I think I'm just venting more than anything else. She's not "seeing dead people" or anything like that. The people she's seen have been very consistent though and it's never an active hallucination. Its jsut I know the hospice nurses and the like are going to just shrug with an "it be like that sometimes" or the equivalent. I want facts. Like, anectdotal facts of other humand who have experienced this and can say to me "Yes, that happens because I saw it with my fmaily member" or something. You know, the stuff doctors don't take as "facts" ;)
I really don't feel prepared for what is coming. This is the first year I've set up a Christmas tree before December. And at this point I'm a literal pagan. I'm just hoping it will help somehow.
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We’ve tried 16 different neuropsychotropic drugs. Only two worked even a little, most did nothing, and some like Ativan, Seroquel and Haldol caused active harm.
The neuropsych docs have referred her to another special-er specialist, who is out of town, but sadly she’s too emotionally unstable to take on long distance drives. I wasted the time I could have taken her by listening to the hospice, who has since discharged her because she wasn’t dying fast enough.
She had no psych history before this and it’s been fast (relatively speaking). None of the head docs can agree on type of dementia except to say it’s not Alzheimer’s. Memory loss is not her main issue either.
I’ve read on forums that 4-6pm is a common distress time for mental illness having nothing to do with dementia. It could be two separate processes that are hard to sort out.
I don’t expect to cure her, but I sure would like to comfort her suffering and improve her likelihood of finding a facility that manage her issues. We’ve had experienced caregivers sob in their car watching her be so acutely aware her brain is eating itself. People who give me grief about not sedating her enrage me, as if I would withhold something that would give her peace!
If you figure it out, I would love to know. We’re going to do genetic testing this year because the whole family has weird med issues. We’ll see if we can come up with a better med regimen.
There are some physical things that can cause outbursts: seizures, pheocytochromas, carcinoid syndrome (neuroendocrine tumors), brain tumors and neoplasia syndromes (I don’t know the proper term). These have not been excluded for Mom because I can’t get her into a doctor anymore. In her case, the neuros mostly also agree that regardless of the cause, even if it was originally treatable, is not any longer, so whatever the resulting dementia, she’s stuck. Yay.
My only suggestions to you are: a) document the good times so you’ll remember them because the bad may start to erode them in your brain and b) find a therapist, even if you do nothing but emotionally vomit on them because you need a safe zone that’s all yours and who unlike family or friends won’t judge you or amplify your distress with theirs.
I’m sorry this is so long. It was a terrible day because of some care decisions I had to implement, and my brain’s ability to filter is used up.
Good luck. It’s a <bad word> road our families are on. Every day we get up is a win. Hugs.
Apparently my mom had called her dr. Or I called. I literally don't even remember which one of us called. her family dr was just telling us haldol is just fine, but the hospice nurse knew I didn't want to use that stuff and neither did my mother. My mom used to do respite care *herself*, for children and adults, and she said, haldol does nothing but stupefy the user and she doesnt want to touch it. But as I was starting to actively lose my own **** we need to do something. So the hospice nurse has decided we can try seroquel -- but in a tiny miniscule dose. I am taking a 25mg pill and cutting it into 4 pieces, for my mom, so 7.5mg2x/d.
Today is after dose 2, and my mom was okay till she thought I was someone else again, so then, she chuckled, and then went to take a nap. Then she was talking to "the kids" again. I checked on her cause I couldnt quite hear what she was saying, but she was at least aware "the kids" are dreams again. before, she was dreaming awake basically.
"The kids" have been around since at least 2017. When she nearly died of sepsis / kidney stone blocked up one kidney and the whole organ went septic. So they're nothing new.
You are allowed to be verbose, I prefer it. I think it might be the best way some of us have to discharge, and I'm willing to read it.
But yeah. Like every day for a long time, my mom would be like "My eyes are watering". Then more recently shes like "I am getting this shuddering flutter in my chest when I breathe". I'm like "... mom. You're crying. That's crying."
Same thing happened to me when it happened to me in 2001-ish. (ikr). When I was fighting through that.. what I did was i would take only a single valium at night. And I worked through whatever my issues were, when I was dreaming under an anti-anxiety sleep. They dont like using benzos for sleep but otherwise, it looks like the nightmares / dreams will instead crawl out while we're awake.
I lost two brothers to the pandemic (2020 and 2022) and my mom lost her eldest brother in july. im pretty sure it is prob a nervous breakdown combined with whatever the other issue is. Its just been a bad few years. And that's something to be sad about overall but. yeah. not much we can do about it.
I'll know if this very tiny dose will be okay or not, the nurse said, in about a week. its so small she doesnt think itll do anything, but as we're super sensisitve to meds I think it prob will.
im personally on elavil cause I was already on it for nerve pain. When my brother died I had to ask my dr for something and she was like "Well you can tolerate that, lets up the dose". And so im on like 75 which is "oh my god. im. so. dry." :) but it works even at that for the depression bit. (where avg therapeutic dose for depression starts at 100-ish? ugh. id be mummified.)
My mom took Ativan during her time in hospice. She also had Seroquel and morphine.
I don’t know enough about drugs to answer your questions.
My mom was diagnosed with mild dementia towards the end of her life. I can tell you that as it progressed she started becoming very anxious to the point of occasionally trying to walk out of the front door in the middle of the night. That is when the hospice nurse put her on the Seroquel. Later on, she became completely bed bound in her hospice home.
If you are concerned about her behavior or you have noticed changes in her behavior then absolutely discuss these things with her doctor or hospice nurse. They can adjust dosages or make changes to other medications.
I don’t know if you can call it my mother’s mind playing tricks on her or not but she started having vivid dreams and then even started having hallucinations. She claimed to dream about a child who told her that she would be with her until the very end. She was comforted by this child.
My mom’s hospice nurse told us that she went through the same thing when her mom died. Her mother claimed to see people as well. I don’t think this is unusual for the dying or perhaps people with certain medical conditions.
Are you planning on keeping your mom at home? If you are becoming extremely anxious yourself do you think it may be a good idea to speak with her nurse to see about placing her in a hospice house or facility? You could visit as often as you want but still go home to rest when needed.
Keep us posted as to how you are doing. Many of us have been in your shoes and we empathize greatly with your situation.
The fact that my mom has this same pair of little kids around her that she had when she had sepsis is partially relieving and partially not( post-sepsis delirium, or icu delirium, the hospital just released her like that god knows why, I had to stay with her for two months till she recovered). that was 2016/2017.
Considering my weird religion. I just wish I could see them myself. Maybe that would make it easier.
The dr and hospice nurse were worried that I could crack, and nurse talked to my mom. My mom was like "am i being threatened with a nursing home" its like .. its not a threat, if i lose my **** and end up in friends mental hospital itll be a promise cause there'd be nowhere else. We lost two of my brothers since the pandemic started, and the rest of us arent in the best of health but one brother is in TX, the other just wanted her in a nursing home cause he didnt want to have anything else to do with her it seems. which... he ignored all of her phone calls etc endlessly anyway so its not like he was at all overburdened with her before this.
anyway today she's better -- she had popped out of it and didnt really get sucked fully back into whatever it was, and the hospice nurse is starting her on the tiniest possible dose of seroquel to start to see if this holds her here.
im still pretty sure the biggest chunk of this is a nervous breakdown. she was "okay", then lost her eldest son / my brother in jan, she moved here, her eldest brother had a massive stroke and died, copd cannula in its very hard to have a good cry if a clogged nose means you start to suffocate, and it wasnt until hospice that i could even get anyone to give us a facemask so she could cry and be able to breathe at the same time, by then i think she'd already started to mentally snap.
I mean, she had said to me right before then how she was having these wild, vivid dreams, and said "This is so strange... how am I to comprehend this?" .. my mother doesnt say sentences like that normally. the day she snapped it was like a couple hours before she said "I want you to call hospice and make sure you have everything you need". etc. then *poof*. She thought she was going to die in October, I think. But she must have been kicked out of line for that, and she's still here. I have no clue.
Its those really dumb promises we make i guess when we dont know what we've actually signed up for.
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