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My mother has dementia (late stages) and I’m at a loss as to how to manage it. She is currently in an assisted living facility in Florida and I am in Illinois so the distance clearly complicates the situation.


The problems started about 2 weeks ago for no known reason. She has become agitated and aggressive every single day striking out at staff and the residents, as well as throwing and breaking things and trying to escape. Out of the last 10 or so days her assisted living facility has sent her to the hospital 7 times.


No one seems to know what to do. Every health professional puts her on a different medication and sends her back to the assisted living facility just for the same pattern to repeat. I’m worried that the combination of drugs they’re prescribing could prove fatal as I read never to administer these antipsychotics to the elderly with dementia. Most recently they have taken away her Lorazepam and put her on Haldol and Risperidone.


I know of course she has dementia but what causes an otherwise docile person to suddenly become so violent? Any opinions, thoughts, theories?


Going out of control and being sent to the hospital every night cannot be her treatment plan. Please offer any advice you can or if you have been in a similar situation how you handled it. I very much appreciate it.

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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.
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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.
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Cdaughter Jul 2023
This is a great story. Very inspiring, thanks for sharing. I wished I lived closer to my Mother as you have some great ideas for spending time together.
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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.
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Cdaughter Jul 2023
Although the hospitals differed on whether she had a UTI or not she was treated with antibiotics and is doing much better in rehab now. The shocking thing to me was that I was able to look at her blood work and even I could see some things were out of whack. How does it get this way? I'm not sure what meds she is on now as she is in rehab but once she is out I will make sure I get a list and a doctor thoroughly reviews them. Thank you.
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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.
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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.
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Cdaughter Jul 2023
I must first say I am so sorry at the loss of your father.

I agree with you that I thought places that have dementia patients would have some way to deal with them as they often get angry or aggressive but have since learned that is not the case. She instead was repeatedly sent to the hospital. Being so far away I didn't know what to say or do. Luckily she is doing better now but it took a long time to find the problem.
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More info

https://www.alz.org/
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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.
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Check for Urinary Tract Infection (UTI).
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cwillie Jul 2023
agree! OP, behaviour changes can absolutely be a symptom of UTIs
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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."
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FYI - UTI info

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