Mom has been in two places that diagnosed moderate to severe dementia, now she seems herself. Can she be misdiagnosed?

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My mom went to jail in August of 2017. While there she was having hallucinations, severe ones. She had mice for years that were fake. My mother lost both eyes at 62 to macular degeneration so I contributed it to her loss of sight. This time it was different she saw me be tied up and my mean sister bring beer into the jail and party with the police. They sent her to a State hospital for the mentally ill. They diagnosed her with moderate to severe dementia. When they released her on September 11, 2017, I went to pick my mother up. They handed me some medicine and said to sign for them. I ask what they were for and was told they couldn't tell me so I signed then came home and googled them. The main one was Risperidone. She had delirium for about two months. In January she started to hallucinate again. Took her to family doctor he increased her dose. We did great until beginning of March. She couldn't put sentences together, halluncinations were back but worse she was seeing children, talking out of her head. She had a doctors appointment on May 1, 2018 to see a neurologist. On the morning of April 28, 2018 she woke me up trying to leave and said someone was here to kill us. We needed to immediately leave the house. So I took her to a local emergency room and they admitted her and sent her to another hospital that can deal with these types of patients. She was there for about 12 days. While there she even tried breaking all the windows out of the hospital and smacked a nurse in the nose. I signed her into a nursing home on May 10, 2018. After about four or five days she came back to herself. She says it was an out of body experience and wanted to know if she killed anyone. She now wants to leave the nursing home. The doctors said she has to be in memory care unit. In fact she believes this place is a hospital. They have asked me to stay away for a little while while she adjusts. I'm not sure how to tell her she will not be coming back home. I can not do this anymore and we had a hard time placing mom because of her police records from getting into trouble while being drunk. If she continued to just be forgetful I could handle her. But the hallucinations are more than I can handle. No one in my family has ever had dementia. Does anyone have any idea how to break this to my mom. She seems pretty clear minded right now and is now begging the nurses daily to call me so I will come get her. My biggest downfall is my heart. At this point I feel like my decision is my life or hers. Has anyone else experienced someone going that far off and coming back? So my two questions are: Can someone who is 77 years old be mis-diagnosed with dementia or does it mean they just have her on the right medicine for now? How do I tell a pretty clear minded mother that she can't come back home? May God Bless each and everyone who reads this because without this site and you. I wouldn't even no what to do.

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My mother is in a "good" nursing home and it has still be an awful experience. I think under some circumstances this is best answer, but for most it is not. Nurses and CNAs know how to give medicine and bath but not how to treat elderly, frail, dementia patients with respect and dignity. I personally regret my decision, however I never expected my sister to pull the rug out from under me and my mother so that adds to a bad situation. Mom went downhill fast in nursing home and sad; she kept spirits up better than I could have. But has been broken.
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Reply to Chuck2018
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The best way to take the weight off your shoulders is to tell your Mom that it’s the Doctor’s decision, not yours, as to when she can go home. I would think she is on a boot load of medicine right now. Meds that have stabilized her. These are probably meds that you are not able to give her at home, plus she may not take them. She is where she needs to be for the time being. That will still give her a little hope that she may go home someday.
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Reply to BeckyT
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Also - my uncle who didn't have dementia, had a knee replacement. Either the anesthesia and/or pain meds he needed gave him the temporary bad dementia while he stayed in a nursing facility recovering. He would call his son and say the place was on fire and they weren't getting him out of his room. Once he was better he would laugh at that story. His was a full memory/mental recovery once off the meds as he didn't have any dementia prior.
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Reply to LadyDi18
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My mom had macular degeneration and was pretty much considered legally blind. She could see the big E at the eye doctor - when she looked to the right vs at the E. She had mild dementia. With the vision issues it is very important to determine what is vision and what is dementia. She wouldn't recognize me until she could hear my voice as she couldn't get a good view of my face. With the vision issues being in a home/care center, she couldn't remember anyone as she couldn't see them to be able to recognize them. She had 2 issues that made her dementia terrible. One when she was put on muscle relaxers and pain meds for her back (spine was like an S). She was on the meds for 3 days. On day 3 is when the craziness started. We took her off the meds and the effects from those 3 days of meds lasted about 3 weeks. She thought it was 1970, thought my dad was still alive and was at work as the car wasn't in the garage (car had been given away since she could no longer drive due to vision), and my favorite was she thought she was 52. During those 3 weeks I worked with her like a stroke patient asking those questions like how old are you. And she picked up on my reaction when she told me she was 52 and then said what? too young? and I said well I'm 51 so unless you had me when you were 1.....and then she laughed and said 82. Those 3 weeks were rough not knowing if those effects would wear off, but they did and it went back to just not remembering if she ate breakfast or what day it was - stuff that didn't matter really. The second time she got bad was when she had a UTI. Elderly react much different with a UTI than younger people. The UTI excessive dementia seemed to go away right along with the UTI - it wasn't dragged out like the effects of the medicine. So maybe not a miss-diagnosis, but if something has caused the excessive dementia, they can definitely get better. And I don't agree with them telling you to stay away - especially with the vision issues. It can be very scary for them not knowing where they are at and not seeing people they know. It is much more important for them to stay in their surroundings that they are familiar with, if they can't see well. So if you think you can bring her home, I would. However, you also need to consider yourself - something I didn't do well at all as a caregiver. But I had money saved so could quit work and make my job taking care of my mom. I did it for about 18 months with the last 12 months being 24/7 other than having some inhome help. I used this site like crazy while caring for my mom (who passed last October). However, this is my first post. Good luck to you and your mom.
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Reply to LadyDi18
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Dementia is not a straight line but rather like a saw blade with ups & downs but also overall on a downward slope - there are good days & bad days as well as good weeks & bad weeks as well as good minutes & bad minutes - it varies all the time

I'd say to your mom that she needs to be 'stable' for a period of time before you can even discuss going home by saying 'when you're better & the doctors say you can' - then you will not be the bad guy - her demented mind has manufactured many prior episodes of weird things that she could be a danger to you - she needs professional help -

Maybe you should ask for some professional help in how to deal with her & educate yourself on how things will continue with your mom - always err on the side of kindness when you can but don't cave into her demands
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Reply to moecam
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Belle,
I sympathize with you, as both my folks were alcoholics (dad-chronic, mom-binge). Dad passed 5 years ago, mother is 95 and has Alzheimer's stage 6.

There is a condition called Alcoholic Dementia.

This is from "VeryWellMind.com" and "Alz.org";
"Excessive drinking over a period of years may lead to a condition known as alcoholic dementia (formally described as alcohol-induced major neurocognitive disorder which can cause problems with memory, learning, and other cognitive skills).

Alcohol has a direct effect on brain cells, resulting in poor judgment, difficulty making decisions, and lack of insight.
Nutrition problems which often accompany longtime alcohol abuse can be another contributing factor, since parts of the brain may be damaged by vitamin deficiencies.
Alcoholic dementia is similar in some ways to Alzheimer’s disease in that it affects memory and cognitive ability. Also, like Alzheimer's, once alcoholic dementia develops it is difficult or impossible to reverse."
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I can't print everything about it but please read up on these. Also read about Wernicke Encephalopathy, (an acute brain reaction to severe lack of thiamine) and Korsakoff Syndrome, where levels of Thiamine (vitamin B-1, that helps cells produce energy from sugar) drop too low brain cells cannot generate enough energy to function properly.

As to your original question;
I would say that the doctor wants to keep her for observation (due to the severity of the previous hallucinations) and building up her physical state, since she's probably not in the best of health. Don't give a date. Keep extending it as needed. To take away all hope of coming home, to me, is a tough pill to swallow. Ask the staff for help with this also.

(Given her history with alcohol/ violence/jail /hallucinations, etc. there is no way to know if she will digress back into the confused and combative state she was in before. I'm sure that's why they want to keep her. )

I know meds are a big part of keeping a confused and violent person under control. It's too bad that it is all we have right now to calm them but, either they take the meds and be relaxed or don't take them and be totally out of control. Sometimes it takes many tries with many different meds to achieve the desired effect for the sufferer.

My mother has gone through many medication changes. She has kept the whole memory care facility (28 patients) awake for weeks. She has hit and scratched the staff. She screams at the top of her lungs. This behavior needs to be brought under control to keep the other patients and staff safe and calm.
Do I like that she has to be medicated with strong drugs that sometimes are contraindicated? No, but I understand that she CAN'T be a danger to others or herself. It's a no win situation.

Good luck in this time of trouble. I feel for you. Please let us know how you handled this.

P.S.-Given her history of violence, I would definitely keep her in the facility and NOT try to bring a violent person back home. You need to not fear for your safety.
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Reply to SueC1957
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Thinking about telling her that the government put her in there. But I will come to visit often and bring her favorite things candy and soda. Also explain that her medication will need to be changed often because of the progressiveness of her hallucinations. I put 20.00 of my own money in her account for soda but they never let her have one when she ask for it. She is self pay for June then we will be qualifying her for medicaid.
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Reply to Belle41
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Countrymouse: They said two weeks. I try to call daily but hard to get anyone to answer in her area. Then they act like why don't you just come in to see her. They even ask me if I wanted to talk to her by phone. She ask them regularly to use the phone. They let her call her only sister a week ago. My Aunt is not in good health and three years older. Her mind is sharp but the body is shutting down due to weight and diabetes. They have already recommend she go on kidney dialysis. I know my mom she is feeling abandon by me. That is why I have to tell her something soon. I hope you respond back. Thanks!
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Reply to Belle41
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shakingdustoff: Thanks for responding. My mom did better with the Resperidone. They increased it again in the hospital this time before she went into the nursing home. So I guess your mom just had a UTI. That is why I can't bring her home. Like you I don't have a prescription pad. My mom certainly has hallucinations without a UTI. They checked her in the emergency room. I'm not Catholic. I am however a Christian and do believe in miracles. Just wondered if anyone knew how I can break this to my mom since she seems clear eyed for the moment.
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Reply to Belle41
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Belle, I'm sorry that you're facing this painful situation.

Dementia is a very wide-ranging term covering literally dozens of different diseases with hundreds of causes. What was causing your mother's behaviours must have been extremely difficult to identify and stabilise, and it could be that other causes of psychosis combined with dementia to produce the effects you saw.

The one really important thing is that your mother is now not terrified and hallucinating. Unfortunately, that leaves the downside that your well-seeming mother, who wants to come home, can't - and you have to do the explaining.

Except, you don't have to explain. And you don't have to be in too much of a hurry, either. How long did the facility suggest you give her to settle in? Six weeks or so? So you have another three to go?

To help your own peace of mind, I'd recommend you keep a journal of news you're getting from the facility and your own thoughts and doings. In due course, when you can visit your mother and start again with her, you'll be able to reassure her about how much care you were taking behind the scenes.

And from there, just see how it goes. At 77 your mother is not really old, there should be time to make happier memories. She is in a safe place being looked after by people who know what they're doing. Let your mother and yourself get your breath back, be patient, let things happen one step at a time.
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