Any opinions, thoughts, or theories on severe agitation and aggression?

My mother had late-stage dementia and a host of other medical issues. She experienced terminal restlessness/agitation. Drugs helped but only when she was put on oxygen did her severe restlessness quiet. She was in a state of hypoxia on top of everything else. I hope your mother gets relief soon.

Cdaughter: Your mother requires residence in a memory care facility as she is well past what the assisted living can offer.

There's a commercial out that talks about this and suggests a website to visit.

My 80 year old father who does not have dementia was given antipsychotics on two separate hospitalizations that made him go nuts. He had a leg infection (entire leg) that was very painful. They gave him half tablet of halperiodol without our knowledge and it was like he had a stroke. We found out on discharge that instead of pain meds he was given this. And the best, the doctors asked us how long he had been acting confused and agitated. Round two more recently, he was supposed to get pain meds and released from fractured ribs. They instead gave him zyprexa (olanzapine) and withheld pain meds. He was agitated, aggressive, hallucinating, did not sleep for over a week while practically swinging from the rails of the hospital bed. This time after being told he was getting flexeril, which he wasn’t, i found out about the zyprexa (olanzapine) and had to argue with multiple nurses until finally i got a charge nurse to remove it. Well everyone was shocked to find out he didnt have dementia at all, and no uti either. This was a horrific saga, and the short version. I also tried to have the antipsychotics added as an allergy to his chart. Instead he received an rx for zyprexa upon discharge. I told the pharmacy not to fill it and flag it as an allergen. Also, it is possible to develop drug side effects to something you have taken for years with no problem. so never rule out a medication as a potential cause of sudden altered mental status.

My father has vascular dementia, and we combine different types of care, which include weekday senior daycare with many fun activities, and my sister and I alternate care. After senior daycare, I have an Uber that picks him up and bring him to the house; this is paid by his Medicare private insurance. We have noticed that some medications can aggravate dementia, so his neurologist discontinued his medications related to personality changes and rigidity. The only medications, my father takes are aspirin 81 mg and rosuvastatin 10 mg for cholesterol, the rest are supplements that he takes in the morning with breakfast - Ensure or Glucerna protein, vitamin D3, vitamin E, Lion Mane, Focus, Omega-3, bacopa, and MTC oil. We have noticed more alertness, calmness, and smiles. He wants to dance and is more talkative. Once in a while, he gets a little bit anxious for a short time, we give him ashwagandha supplement 1 capsule, and he relaxes right away. To create happiness and a sense of freedom, we take him out for a lot of rides around nature. My father loves seeing landscapes and animals. When we take him to the zoo, we use a walker/wheelchair combo, and he wears double male incontinence diapers in case of an emergency, and the bathroom is not closed by. We carry a urinal in a little backpack with gloves, wipes, extra underwear, and clothes. His bathroom routine is every 2 hours. I hope this can help you and someone who cares for a family with dementia.

More info

https://www.alz.org/

FYI - UTI info

https://www.healthline.com/health/how-to-prevent-uti#prevention-tips

A Geriatric Psychiatrist can prescribe medications. Share the visit findings with the Geriatric Psychiatrist and the facility leaders to solicit assistance. Facilities can ask patients to leave if things get out of control.............."It takes a village."

It’s impossible to know what goes on in the brain of a person with dementia. She could be having periods of hallucinating which is obviously extremely scary and can cause agitation and lashing out. Sometimes, as in the case of my father, it was simply anger and frustration at the entire situation. Loss of independence, loss of freedom, loss of capacity…so many losses. I’d be angry too. He did NOT do well on antipsychotic drugs. They all made it worse.

Memory care facilities are supposed to be equipped to handle aggressive residents. You may need to find one that can take her on and has a better plan than sending her to the hospital every time she has an outburst. Possibly this is your opportunity to move her into one closer to you so you can better monitor her care.

I lived 3000 miles away from my father so I totally understand how hard long distance caregiving is. He ended his own life so he never went into memory care, but he was about 8 months to a year away from needing to be placed. It was constant source of stress thinking about how I was going to manage that from so far away.

What a great forum and a special thank you to all those who responded to my post. A lot of good information to think about, work from.

To answer some of the questions posed here, yes she is in Memory Care and has been for quite some time. She mentions problems with the residents but I'm not sure if they're real or just what her brain is telling her.

As far as a UTI on her first few visits to the ER they said she didn't have one but on her latest visit they said she does. This is typical, one hospital/doctor says one thing and another something entirely different. This last hospital seems to have done a pretty good workup, with a CAT scan of the brain (nothing abnormal), a CBC (a lot of her blood levels (RBC, HGB, HCT,MCV, lymph are low and PT is very high).

One of the strangest aspects of this is that one minute she is in great spirts and the next raging mad. Its goes from one extreme to the other very quickly.

She is in Florida so they did a Baker Act on her which is a 72 hr involuntary hold for mental illness but because she has dementia they found it does not apply/they can't do it.

The memory care assisted living says they can't do anything for her either except send her to the hospital when shes shows aggression. The next step they say is to kick her out. What do I do then?

Again, thank you all for the kind words, ideas, advice and compassion, It is very helpful.

Does this AL facility have a Memory Care unit or wing? If so that is where she should be.
If her medication has been changing as often as she is being sent to the hospital it is no wonder that nothing has worked at this point.
Has she been checked for a UTI?
Are there any other factors that might be "setting her off" in the evening?
Is there a new caregiver? Is there a new resident? Have they started a new routine? Any of these factors could have an effect on her.

And because it is me answering this....Is mom on Hospice? It is another set of eyes on her as well as staff that can help manage symptoms.

I am assuming, since she was twice sent to hospital that A) you are her MPOA and B) MRI or CT scans were done to rule out stroke and that urine C&S (culture and sensitivity) was done (often a simple UA will not diagnose infection.)
I am assuming a blood panel was done to measure electrolytes and be certain they are WNL (within normal limits) as a bit of a tilt in sodium and other electrolytes can cause this.
So I am assuming a FULL MEDICAL WORKUP has been done.

If that is the case, and there is some sudden worsening of her dementia (which is UNUSUAL--the suddenness that is), then you are down to she is going to have to have anti-psychotic and other medications tried. And by tried I mean it is anyone's guess what drugs or drug "cocktails" might work to help her be in some control, less agitated, and yet not sent into stupor.

This IS Rocket Science. (You remember that "it's not rocket science" adage; well THIS IS). First of all they try what has worked on others and worked in the past. When one drug doesn't work they play with dosages and add ons. And when this is done not in a SNF but in the nursing home itself it is ALMOST IMPOSSIBLE to evaluate. The docs can't see the effect. There aren't adequate nurse's notes to tell them how it's going.

You can see the impossibility of all this along with the fact you cannot BE there. This is as complicated as it gets. It will take patience and I hope that all involved have that.

If she ends up sent back to a SNF or a Neuro-psyc unit then to tell the truth, imho, that's a GOOD THING because at least there SOMEONE will treat this like the mystery it is, what diagnostic workup is missing, what will work, and what won't. It will be almost impossible to come up with good effect in MC.

I am sorry. I hope you will update us.

I would think that she would be in memory care not assisted living. she appears to be way beyond the AL management stage.

My step-mother became somewhat aggressive in the afternoon (sundowners) nothing like your mother, we increased her dose of anxiety meds, calmed her down, she is in MC.

My MIL is in hospice and she started becoming aggressive and very loudly angry last week. Esp at night.

No rhyme or reason, just the decline. As long as she is kept mildly sedated during the day and then heavily sedated at night, she is manageable. It's when she refuses meds and gets over-wrought over something that the aggression comes to the fore.

Sadly, the meds don't always do the job real well. The 'kids' have had to play around with the dosages a lot to get the desired effect.

She's been in the hospital a couple of times to get things leveled out. It's a constant 'battle'. BUT do check for a UTI. Those can make you just crazy!

I am also a trigger for her, so I don't have anything to do with her, and my name cannot even be brought up in conversation (so I hear).

She'll last forever like this, I swear. The only 'hope' the kids have is to keep her sedated 24/7. Actually, for her, sedated is what 'normal' people act like.

Sorry - no advice. Just shared frustration. When my mother (advanced dementia) knew me, she directed a great deal of anger towards me (like for making her grow old, taking away some of her skills, stealing all her money, marrying and having kids instead of moving in with her) and she is now in care, where she’s been quite content. She has recognized me 3 times in the past year and told me to leave. The last time she raged, even became violent, which continued after I left. They got her calmed but are going to try Seroquel 25mg. (labs OK, she’s very articulate and hasn’t indicated pain) I haven’t visited her since, and they will sedate her when I do.

So we know I am my mother’s trigger. Days later, other visitors found her to be cheerful and welcoming. Good luck patterning out your mother’s triggers. Staff change? Delusion? Assuming the hospital tested for UTI, etc.

Does she have a Neurologist? If so, he should be managing her meds not GP. Some Dementias can't tolerate some meds. I would think the first thing an ER doctor would do is check for a UTI.

Your Mom is now more than an AL can handle. I am surprised they have not recommended Memory care. Even then, they too have limitations and LTC might end up being an option.

She also might be downgrading so it might be time for a nursing home or memory care.

Get a palliative care consult. palliative care docs manage all the medicines, so that will solve your fear about drug interactions. They also know a lot about a lot of things, so this might be your best option. Good luck.

Check for Urinary Tract Infection (UTI).