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Seroquel is used "off label" for huge numbers of dementia patients. It allows the to be happy and calm, not sedated.

In your shoes, I would get the Ombudsman involved to respond to their threat.

I think your mother would be better off it a specialty psych facility where they are willing to think outside the box in terms of medication.

Your mother has a fatal disease. In my view, under those circumstances it is allowable to try meds that will allow her some peace. And for you not to become suicidal.
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NeedHelpWithMom Feb 20, 2024
My mom did very well with a combination of Seroquel and Ativan.
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Delusion,anxiety and panic attacks isn't too controllable. I did notice an improvement when I got mom a toy to squeeze, sounds silly, I know. It was a spongy thing and it kept her hands busy and she was able to release her tensions. In her hands, her mind focused on squeezing,not on her thoughts. It's worth a try, right?? When you can't be there, you could say, mom you got the (whatever) I gave you? Give it a squeeze for me because I love you! Make sure the staff knows she needs it if it works for her. Good luck and I know that you're trying.
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Beatty Feb 20, 2024
I don't think that is silly at all. I think it's a good idea! Having something to hold, feel & give some pleasurable effect.

I have seen a dolls used for someone to talk to & plush toy dogs to pat. Both can sooth well if ot fits with the person's personality. Even folk without dementia who know full well it is a doll or toy can enjoy this (not all, but some). It can fill a tiny part of their social need.
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Are you in the US?
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Rockhardplace94 Feb 18, 2024
Yes.
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I'm unclear on what "freaks out" means. Is she crying, raging, throwing herself on the floor, calling you, kicking the wall, trying to find matches to burn down her room - what? You say that you visit 3 - 4 times per week, so does she know when you're coming and not "freak out" on those days? Meaning that she can control her "freaking out?"

I'm so sorry that you and mom are going through this, but I'm confused about how much is psychosis and how much is willful temper tantrum.
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Rockhardplace94 Feb 18, 2024
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Rock, This is up to management of the care facility and their doctors to handle.
Step away. You aren't an expert.
She wants her baby? Well, he's married and has a life and isn't available.
So whatever has to be done to make her accept that fact should be done, and that isn't up to YOU.
YOU have a MARRIAGE TO SAVE.
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cover9339 Feb 18, 2024
This goes both ways, this is the "for worse" part of the marriage. It's up to the wife if she wants to stay or go.
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You are reinforcing your mom by giving her her way. There’s no nuance in this other than she knows she will rip you apart to “read to you” and you’re defending her “momma bear” response.

Many a wife would have serious questions about a husband who runs off on Valentine’s Day so mommy can read him bedtime stories. And then you stayed so she thinks YOU like being read Where the Wild Things Are while your wife is crying. You cannot risk your marriage further.

Ask the don what they do with cases that have no family involved. What they do with the court appointed guardian ones. Being Medicaid, they’d be the front line.
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Rockhardplace94 Feb 18, 2024
I was told if I let her become a ward of the state I will no longer be able to advocate for her.

It has less to do with me wanting to stay but as the facility administrator told me they could remove her, and if that happens we are back at square one.
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I am finding it amazing that more and more facilities that charge 12K + a month are expecting the families to provide additional staff to manage the elder. Isn't that what they get paid for? My coworker is going through this right now. She gets multiple calls during the day to calm her mother down.

I like the idea of a babydoll. For my grandmother she loved a stuff animal. When another coworker's mom was placed I suggested she get her a stuffed version of her old dog which went over very well. When my father still lived on his own we hired a companion for once a week. Would it be possible to hire a paid visitor for her? Or ask the local church groups to visit?

I also think you need to report the threat you received. These places count on you not knowing what they can and cannot get away with.
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cover9339 Feb 18, 2024
This is so very true, lkdrymom.
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Has anyone suggested getting mom a life like baby doll? My granny loved hers as though it was her child. She cared for it, held it and it kept her calm.

It was a big help in visits to. We would by outfits at the thrift store, bring presents for the baby and make a big fuss over changing her into her new outfit and then putting her down for her nap while we went for a soda and walk.

Is your mom on any anti-anxiety meds? Sounds like she has sundowning that needs to be addressed by her doctor. I would be looking for a geriatric doctor that has some real experience with medications for the demented.

Best of luck. These situations are tough on all involved.
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Southernwaver Feb 18, 2024
Great idea.
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Turn your phone off when you are out with your wife, That is ridiculous that they blew your phone up. Your mother is delusional which means you CANNOT reason with her.

You cannot negotiate with a delusion.

You also don’t need to go there 3-4 times a week. Twice a week is plenty.

You can’t let dementia be in control of your life.

You didn’t cause her dementia. You cannot cure her dementia.

Take your wife on a nice vacation and put the facility on do not disturb the entire time. Your wife needs your attention. Your responsibility is to your wife.


Get an elder care lawyer. It would be worth $1,000 for the lawyer to deal with the facility for now.
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Southernwaver Feb 18, 2024
And call your ombudsman about their threat.
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They’re being paid tens of thousands each month to deal with mom, because she’s at the point where you can’t. That’s their actual job. If they dump her at a hospital, then it’s their job to find a place.
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Southernwaver Feb 18, 2024
Yup, call their bluff.
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You are paying big money to have your mom in that facility, 2 hours away. How dare they say you are passing the buck to them. That’s their JOB. Not to mention that every time you come running it reinforces her behavior. I know it’s hard to let go, but you have to let go (as in shut off your phone during valentine’s dinner).
I’ve only been on this forum for 6 months and I have seen several marriages fall apart over one spouse putting their parent first. I’m not pretending I have it all together myself. My mom’s care is putting a strain on my marriage, even though I have care 6 days a week and mom is only 30 min. away.
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You can't control your mother's delusions. Secondly, there is a such thing as turning off the phone when you can't take anymore. Like someone else said on the board is that you can't fix old.

1. Get yourself into therapy to learn how to take back your power. You cannot set yourself on fire to keep someone else warm.

2. Your mother is in a facility. There is a such thing as an ombudsman who you can file a complaint with. Also, you can file a complaint with the Department of Health about this facility if push comes to shove. Don't let anyone bully you into driving when you are too tired to calm an elderly person down. There are medications to help these people relax. Anyone who refuses to medicate an overly excited senior or refusing to send them to a psychiatric ward so that a geriatric psychiatrist who specializes in these types of cases is wrong. There is nothing wrong with psychiatry.

* I would contact the Department of Aging and find out if there is any help out there.

Please get some rest and relaxation. Your amygdala is probably in overdrive at this point. Listen to your wife and protect your marriage. Your marriage and your family that you have created with your wife comes first.

I know this may sound cold; but people get old. When they need a higher level of care this is when long term care and assisted living comes on the scene. We need to accept the fact that we are no longer able to provide without doing further damage to ourselves mentally and physically.

I took a lot of crap from my family with their nonsense, crap from social workers and Home Health agencies. I was suffering and no one cared. Finally, when I was at work and was just worn, I started the process to move forward to have my disabled placed. It took a while but she eventually was placed and I moved into my own apartment. If I would have stayed in the family home, I probably would have been homeless.

One doctor told me years ago; if you don't look out for yourself, no one else will. I believe in self-preservation.
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cover9339 Feb 18, 2024
Thank you!! So true!!
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Have you taken Mom to a neurologist? You are at a point that this anxiety is causing Mom big problems. Its not good for her either. She may need to be meditated big time. And she is alone? My Mom was kept in the common area most of the day to keep an eye on her. The MC should not be calling you for anything other than a fall or emergency. They need to deal with the problem.
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Rockhardplace94 Feb 18, 2024
Yes she has. The common area is locked most of the time. For the most part the current common area is being in a wheelchair outside their rooms where they line up the hall, or in their room where they can watch TV.

Her doctors refuse to go down the medicate her big time because what they can realisticly do boarders on chemically restraining her. Same reason she is not strapped in her wheelchair.
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In a patient this severely delusional I am completely flummoxed by the fact that there is not adequate medications provided.
This is NOT sustainable.
If it kills you, what then? What happens to Mom?
I can tell you the answer. She will quickly enough be provided medication relief.
And yes, I mean EVEN IF IT MEANS she is in a stupor, because quite honestly that is sometimes the only answer. Many elders don't even HAVE children.

The facility is hired to provide this specialized care. So are the doctors involved in the care.
I stand firmly with your wife.
You need to be protected from risking your own life, which is what you are doing.
Your constantly answering this call is enabling them to ignore that this is a person who is in SEVERE DISTRESS.

Tell them that for your own medical reasons you cannot continue this.
Ask that they medicate your mother to the level she is not in distress.
Sorry, you can't fix this. You cannot continue in this manner. Throwing yourself on your mother's funeral pyre isn't going to help her or you, and it will destroy your marriage.
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What medications have been tried?

Look, the NH can't put her out on the street. They would send her to a hospital and then you decline to pick her up. She will remain hospitalized until a facility is found.

Your mother, it would appear to me, NEEDS to go to a psych facility so that her delusions can be controlled by medication.

Maybe in a perfect world, all demented elders would have one to one competitions to reassure them constantly. Right now, that's not the case.

You, dear man, are going to die from a stress related disease or crash on the way to comforting your mom. Please don't let that happen.

Your first responsibility is to your health and your marriage.
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Rockhardplace94 Feb 18, 2024
Her medical team throw everything at the situation. The issue is as they have told me her delusions are triggered based, and they told me medication is not about preventing someone from feeling. She is reacting to a feeling in the moment.

LIke medications did not do anything to prevent her response from the trigger. That is the issue.

I have asked about things like seroquel but was told it is not safe or approved to give to someone with demenita related psychosis. Was told treatment is more about mitigating and removing triggers to limit outbursts.

I am no medical professional, so I do defer to her medical team.

Do I need to find new doctors? She does have a geriatric team that is part of our local hospital and has one of the best dementia related teams.

My mother also recognizes them. Should I just use the doctors afflicted with the facility? Are her current doctors lying to me about treatment for dementia related psychosis?
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Oh my. How dare your moms facility threaten you that if you "try to pass the buck to them" that she will be gone.
Your mom is now their "buck" and it is up to them to have to figure out how to handle her. They obviously don't want to, even though they are the ones getting paid to do so. That's some crazy mixed up shit for sure!
Typically when a loved one is placed in a facility, they recommend that the family stay away for several weeks so the family member can adjust. Did they not recommend that to you and if they did why didn't you listen?
Your mom will never adjust to her new home if you keep running to her aide every time she calls you.
And the facility should not be calling you every time your mom has an episode, but instead should be handling it best they can and if need be getting their doctor involved to help with medications that might keep her more calm.
I don't blame your wife for feeling neglected, as she is being neglected. Your wife and marriage should be your number one priority, then your children, grandchildren and then your mom.
So as you can see, you do have your priorities mixed up. Hopefully it's only fleeting and you'll soon get them back in order.
And I would keep searching for a better memory care facility for your mom who actually knows how to deal with peoples issues, as obviously the one she's in now doesn't.
The facilities are out there, and it's my understanding that all MC's have to have a set number of Medicaid beds available, so don't give up. And you may have to seek the help of a social worker from your local Senior Services or Area Agency on Aging to help you.
So I would now recommend that you not only take your wife back out on her belated Valentine's dinner, but perhaps even a nice romantic weekend away. And for God's sake, leave your phone turned off while you are!
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Rockhardplace94 Feb 18, 2024
No, they said transition is smoother when families are involved. I did try to limit it to once a week and that is when the admin told me what I mentioned above.

I was told they could send her to the ED and refuse to take her back, and if I ignore the phone calls I could get in trouble especially if I do not take calls they claim is an emergency.

It really was hard to find this place her MLTC sent her review to everywhere.
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I'm sure you will get alot of good advice here.
The best thing I think is to learn from others mistakes. I did everything right, or so I thought. Making sure I had a good balance and my care taking wasn't taking away from enjoying retirement age with my husband.
My mistake was bringing it home in my head. I was home physically, but mentally I was still with my mother, worrying about my mother, upset with my mother. Now I'm trying to be present when I'm home. They may help your wife more if you are mentally present
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