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Please forgive me. It's 4am as I write this right now. I've only had 2.5hrs of sleep. I'm at my wits end and don't know what to do or how to handle this.


Breif backstory:


I am 26, my mother will be 54 this month. She has some form of dementia, it could be FTL or Lewy Body. She fits some of the symptopms for both, but not all, so she's in a grey area right now and will do testing and see a neuro again in a few months. Because of there being a high chance of it being Lewy body we can't risk putting her on anti-psychotics.


****the story****


She's not allowed to cook, I keep the stove's burners in my room when I'm not cooking with them and the oven is locked from her controls as well. That's not even a part of tonight's issue, but it needed mentioned.


She's very paranoid at night. To the point I was questioning my own sanity. I've had a camera put in to face the front door, kitchen opening, and living room window. I've explained and showed her how the alert system works so I know if any stranger has been in the house. This was due to her calling the patrol security and telling them someone was in our house whenever I left to visit my dad in a town three-hrs away.
Then she started doing it even when I was home.


I tell her every night before she goes to sleep to come and get me whenever she thinks she hears something. I sleep with the house phone in my room so she can't make calls without asking me first (due to her calling every number she sees on tv, or medical insurance companies over and over again, this change has only been within the past month).


I allow her to have a broken cell phone that's only function is a clock and emergency calls due to it keeps her in a manageable mood.


I thought since I took the house phone away, she would come to me if she was being paranoid so she could use it. Tonight, for the second time in a month (but the first time without the house phone) I woke up to police talking to her in my house, and leaving five-seconds because they didn't find anything. Imagine hearing a man's voice when no men live with you, at three in the f**cking morning.


I was so mad after he left, I yelled at her until I cried (I normally try to keep a level head and understand it's her paranoia), and she never batted an eye. She said she smelt someone cooking toast in the kitchen and wanted the police to get him, but they ran away as the cops pulled up. She even had me touch the oven (it was cold I had cooked fries earlier in the night), but she thought it was warm.


I took the cell phone from her, only after promising to give it back in the morning, otherwise I could sense she would fight me for it. I don't know what to do. Do I keep it, give it back? She'll act out if I don't give it back.


To be completely transparent, I live in a state where weed is legal, and I do smoke it only at night to help me sleep and keep my insomnia at bay. I never smoke it in same room as her and I use filters for the smoke), I've never let her had any, and I always wait until she's in her room for the night. I can't make her sleep, but at least I was able to keep her in her room. If she hadn't had the cell phone this wouldn't have happened, but I once again put too much trust in her that she would come get me first.


When I asked why she hadn't she said she didn't want to wake me.....


Anyway, even though it's legal, I don't want cops walking through my house when I know everything is fine.


I'm suppose to go the 19th with my step-sister to visit our parents in the town three hours away, since it's a long drive it makes sense for us to spend the night due to not having much time with them. I would be back around 12pm on the 20th. I used to feel comfortable leaving her here for one night. But with her call the patrol and now police more often, I don't know what to do. I haven't seen my parents in over a month and I'm crying right now because I may not get to see them.


I'm going to ask her sister (who won't do anything in the way of care for her. I have to beg for her to take her for three hours to go see their sister who also has dementia. Otherwise she'll go without taking my mother.) if she can spend the night that day.


My only other option is our neighbor, but she has her cousin living with her at the moment and he creeps me out, he's always trying to hit on my mother.


We're currently fighting with Mediciaid to get her back on it. They switched her over to Medicare/Atena and are jumping through government tape. She doesn't make enough from SSDI to afford AL on her own, nor can I afford it right now either.


Do I not sleep normal hours? Stay up until the sun is out when she starts to act normal again?


There's no reasoning with her. The men who come in the house can go undetected by the camera and leave the only open exit right in front of police. They want to steal items like blankets and used makeup but not the flat-screen in the living room. I can't take this stress anymore.

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hey A! ~ I get up at 3:30 in the AM and I was just drifting thru the ?'s. I saw this one and it pertains so much to me I thought I'd give you my little bit of advice.

My dad was diagnosed w/ LB Dementia ~ Finally! I was running him all over town and Drs for years. When I finally got him into a Geriatric Psychiatric Dr and after tons of tests and years of waiting, they said he has had LBD for years.

The medication has helped quite a bit w his delusions, and you ain't seen Delusions till you've seen my dads delusions. Every night he saw 3 kids trying to kill him. they'd run down the hall after him, come out of the closet for him, climb the outside of the building and come in thru the window for him.

He was calling the police and pulling the fire alarm every other night. He was walking out of his independent living at night to try and find where they were coming from; digging in the dirt along the fence to find their tunnel. Thank God the staff at his place loved him cuz he is just so charismatic and cute, but the night receptionist could only take so much.

The staff was calling me every night to come and get him or they were gonna call 911. I had him in Indy Living w/ an aide that came in during the day to help as this was a cheaper way to go and I was trying to make his $$ last. I also took him out for day trips everyday for about 4~5 hrs and that helped him during the day. But the picking him up at 7pm and taking him to my home til 7 the next morning was getting tiring for us all.

FINALLY, my appt date came up. Bottom line to a very long story is we started trying him on different meds that helped w/ the delusions of LB. Risperdal~Risperidone. Same thing. It helped so much w/ the delusions. It took a long time to get into his system as it was raised little bits at a time each week or so. The 3 kids are gone. No more phone calls at night. BUT he still sees some harmless delusions like a bunch of birds outside his window or a dog or two in his room. This I can live with!

I know all drugs work differently for everyone Blah Blah Blah but he tried Gabapentin and that was BAD for him w/ his LBD. I can't remember the other ones but see how risperdal might work if you can get a dr that thinks it's ok for her.

I feel so bad for you cuz your mom is just so young for LBD. They said my dad prob had his for years but was able to hide it very well by his charm and great easygoing personality. Plus he was a gypsy his whole life and didn't stay in one place long enuf for someone to figure out the beginnings of LBD. He's gonna be 88 soon and I have had him now for about the last 5yrs.

It is so disheartening and tiring. He just fell last month and broke the ball off his femur. The Drs wanted to let him go as he is down to his last days they're thinking, but a broken bone isn't a life taking ailment. Not like kidney failure or heart attack. So its been repaired and now he is wheelchair bound. I took him out of his rehab for a root-beer float the other day and you would've thought it was the nectar of the God. He is so thankful for the sun on his face and the turning of the leaves. He has no idea that he won't be walking anymore(LBD) so he asked me to look up the times of the Tango lessons offered down the street from his AL.

You are so young and this will pull you down so fast. Get some backup plan going w the help from the gals on this site and drs and social workers cuz if it is LBD you got a LOOOOOOOOONG haul. Much love your way.
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I'm hoping others are going to come along and give you good advice, I just want to reach out and tell you how much I feel for you!

Have you considered the "nuclear option" of calling 911 during one of these episodes and having your mom taken to the ER? Is she wearing a Medicalert bracelet that says "NO ANTIpsychotics"?

It really sounds to me as though your mom needs to be in a complete care setting (like a hospital or psychiatric unit) to get a workup for whatever is going on. Once she's admitted, you have the services of the hospital social workers to get her placed.

Are you working with an eldercare attorney to get her recertified for Medicaid?
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OMG, you poor souls with parents who go undiagnosed and untreated for so long. I don't have any good advice, just two arms to give both of you, ASxOren and ImSoTired1, big virtual hugs. {{{{Hugs}}}}

ASxOren, I hope you can get some treatment like ImSoTired1 did for her dad before you completely burn out. I don't know how you can do it. Can you also let the police dept know about your mom's mental illness (of whatever diagnosis) and have them call YOU to verify there is an issue before they send a squad car out? I'd try that.
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If she is acting normal "happy go lucky" when the police arrive, then  calling 911 is no use. They will not take her if she is not displaying behavior a danger to herself and others AT TIME they arrive. They will not transport a non-emergency

I went thru this with my Dad.

I suggest you get on that waiting list asap.
Take her to the hospital for evaluation. Get doctor to help place her. The crap about saying how brave you are to deal with this and then, in the same breath, refuse to assist you in a placement? That is crap, don't stand for it
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I think the same as Barb, she needs to be in a psychiatric unit where they can monitor her behaviour and figure out how to treat it. This can't wait a few months, try to get a recording of her when she is out of control so the doctor can understand what you are facing. And do consider calling 911 if she gets out of control, if you break down completely - at with no sleep you soon will - she would be carried off with no advocate to speak for her.
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You say she'll see a neurologist "again" in a few months - does that mean she already has? And the best that anyone could come up with is "take her phone away"?

What investigations have been done? Did she have a CT or MRI scan of her head?

These are pretty heavy-duty symptoms your poor mother (and poor you too!) is experiencing - I think I'd agree with trying the 911 option when she's next in the middle of one of her florid moments. I mean, she's only 54 - aren't there all kinds of possibilities that need to be ruled out before we jump to the dementia conclusion?
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What a bloody nightmare.

Right.

EITHER your mother is not a person of interest to APS, not of concern to the police, not diagnosably bananas - in which case she's a competent adult and NOT your responsibility, and you can leave her alone and go out of town whenever the fancy takes you, and you can let her have her phone and call 911 every ten minutes daily if she likes and see how fast that gets a reaction from the services concerned ...

OR your mother is incapable of living independently, in which case you are entitled to receive support with her care and she is entitled to a proper psychiatric assessment with a result at the end of it.

But the police and APS and the neurologists and Uncle Tom Cobley and all can't have it both ways.

What does your mother think is wrong, by the way? I don't know why I didn't think to ask that earlier - what's her view of how things are, and how she's living, and what's going to become of her?
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It would need to be an in patient psych evaluation so they have a chance to see her meltdowns and to begin treatment, anything less will just be more of what you have already been doing.
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Like KatieKate, I was also struck by how unhelpful the professionals are being to you. And about the waiting list -- with a hospitalization can't your mother jump to the top of the list if you refuse to take her back home? I know it will be hard, because she has to be having an episode when the police come.

You are only 26! We all feel for you. We don't want you to destroy your life over this!
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Oren, can you clarify something for me?

In your opening paragraphs, you state that your mother is 54, then segue into the traumatic issues you're both experiencing.

Then later you write that:

"I'm suppose to go the 19th with my step-sister to visit our parents in the town three hours away, since it's a long drive it makes sense for us to spend the night due to not having much time with them. ... I used to feel comfortable leaving her here for one night."

So, are you visiting your stepmother and father, but caring for your mother, in the same home? I'm a bit confused.

Thanks!
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