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Such a hard decision to make but you're right - I'm sure your mom wouldn't want you all to be mistreated like this. You don't say if she has always been this way or not. If not, Alzheimer's makes some people very mean, so try not to dwell on her being glad your mom is dead. If she has Alzheimers, her brain is being short circuited and nothing she says will necessarily make sense or be true. If she were my grandma, I'd probably rationalize that with some small part of her knows that she's not 'right' any more and glad that her daughter will not have to go through life as she is now. If she has no savings or money, so to speak, besides her Social Security, you could probably get her on Medicaid to help with the facility expenses. Hope you are checking that out.
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Chicago1954- I am so sorry to hear about your sister and the lack of emotion from your mother. That is very painful.
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Gladimhere- Now I'm very nervous! As soon as I get her situated I will start researching a back-up plan in case I get that call. I think I'll be able to think more clearly once she's out of here. I like the idea of having her sent for a psychiatric examination instead of coming home. She will not return to my home under any circumstance. Not even for half a day. Maybe I need to start researching local places that take the very mentally ill so that she can be transferred there directly from the place she's at, if it comes down to that. It's possible that she could be refused during the assessment so I guess I better have a backup plan. Thanks for all the advice!
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You are doing the right thing. After my sister died suddenly, after taking care of Mother for years, Mother didn't even go to the funeral home. So, I know where you are coming from.
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I absolutely agree that Grandma does not come back to your home, Aisha. You do need to be prepared and educated on what to do next if this facility does not work for Grandma.

A friend went through a similar experience, mom was not psychotic, but family had an unrealistic view of the care she would need and placed her in a group home with four or five other residents that were not down the path into Alzheimer's as far as mom was. After three days the family was called and told they needed to pick her up since this home was not suitable for her. Mom upset the delicate balance within the home. Her issues were she did not know which room was hers and was going through the other residents rooms looking for her things. It created a tremendous amount of anxiety within the other residents.

She went home for about a week until another home was found. Have not heard the results of the second one. Finding the appropriate place is sometimes trial and error. But with your grandma's medical condition, they should be instructed to send her to the hospital for a psychiatric examination. Do not bring her home again.
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Thanks everyone. A board and care is a house in a residential area (usually with only six rooms) that has 24 hour staff, visiting doctors, podiatrists, dentists, three meals a day, and medications dispensed. It's similar to a nursing home but much, much cheaper. Some board and care's do not take dementia/alzheimer's patients or very bed bound patients, but the place I found accommodates the most difficult and challenging of the alzheimer's patients.

I described my grandmother to them and how she is very difficult and her family can not handle her. The staff assured me that they can handle all types of people. They have video camera's, bed alarms, 24 hour awake staff, etc. I'm ok with her going and letting them make the assessment after some time and then moving her. I really think they will be able to handle her though because physically she is getting slower, weaker, her eyesight is going, she falls if she tries to move fast, and I know if it weren't for that she would have to live in an insane asylum. They will have a visiting doctor and he may decide to adjust her medications to keep her more calm. Her current doctor refused to do it and I truly don't feel he was wrong in putting dementia as her primary diagnosis. If he saw this woman was capable of running around with knives trying to stab people, he wouldn't agree to this. She would fall and not be able to see the knives well enough anymore, that's actually a blessing. My biggest concern with her was medication and she won't have access to them again when she moves. It's even possible that this place takes psychiatric patients as well, but I wasn't going to call and find out after we're so close now. I can't start this process all over again.

If sending her there is the wrong thing to do, then in time the situation will right itself. I really can't change the plan at this point. I can't start over with researching places right now. I need this to go through right now and we'll deal with a change later. At least by then she'll be out of my home and I won't be in a chronic state of tension and stress. I was so completely worn out yesterday after taking her to the doctor. Just doing that was very emotionally, mentally, and physically draining. I really feel that she will be safe when she goes and others will be safe from her. I'm going to ask the lady from the board and care to come do her assessment of Grandma on Thursday with the hope of moving her the same day or the next day. She might act so horrible in front of the lady that she will be denied, and then we'll just have to deal with it.
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"Placement First" - ABSOLUTELY! If G/ma doesn't settle in, and medication adjustments don't work either, then she will be up for professional re evaluation.

The board and care may or may not be able to handle her, you'll never know until she's there. If they can't, they are legally obligated to state that she is inappropriate for their facility.

Aisha, be prepared, IN NO WAY should you EVER accept the responsibility or agree to bring her out and home!!!

You MAY be faced with turning her chair over to the state, who will appoint a public guardian. You will have no choice, you ALREADY have no choice.

For the first time, from the doctors own lips, you have now heard that you have been trying to rise above the caretaking of an impossible situation. No matter what happens from here on in, truly time for you to let go.
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There is a saying that used to do the rounds in the bad old days: "placement comes first." I agree, glad, I raised an eyebrow at the doctor's little sleight of hand there, too; but from Aisha's point of view this move gets direct, immediate responsibility off her hands. From here, whatever options are on the table they do NOT include her returning to the family home - which is no safer for other people than the wrong NH would be.

God willing, the end result will be a place of safety where Grandma can receive the specialist psychiatric care she needs - long overdue for all concerned. Aisha, well done, it's been a hard road for you, I hope it gets all gets sorted and cleared up in short order from here; but oh my goodness your poor grandmother too… xxx
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Aisha, changing her diagnosis to get her accepted into a group home situation worries me. While is was kind of her doctor to make the switch, it was not very ethical, IMO. The place she is going has responsibility for more people than just Grandma. It sounds as if she really needs a psychiatric hospital and that she is not only a danger to herself, but others as well.

What is your plan is after a day or two this place calls to tell you that Grandma needs to leave? I don't like to play devil's advocate, but this situation concerns me. You need a backup plan, and it may become handing her over to the state and let them care for her.
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Aisha. you and your family have endured more than anyone should be expected to in the course of caregiving and you have made the only possible decision. Grandma needs full psychiatric care at least for now in a locked facility. With so many new medications available it may be possible to control her behavior sufficiently to transfer to a memory care unit but at this late stage that may be a pipe dream. One can only pity such a poor demented soul. In days gone by she would have been warehoused with her own kind in terrible conditions and when she got out of hand physically restrained. Today the restraints are chemical, Of course she wants to die she has spent her whole life in this living hell. You are taking the only course possible she is way beyond the capabilities of the untrained family. I don't know what a board and care unit is so can't comment on their abilities to adequately care for grandma. So sorry your family has had to go through this and hope the move goes smoothly.
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Thank you everyone. Yes, there is much more to this back story! I took my grandma to the doctor today (after much fussing and protesting) for her TB test that's a requirement for the board and care and a check-up. I had a hand-written note I gave to the lady at the front desk to give to the doctor before he saw my grandma. I described her recent behavior and explained that she will be moving to a board and care but to not mention it in front of her. She acted pretty naughty during the appointment and the doctor actually raised his voice at her and was very stern. He is normally so patient and compassionate with her but I think today he saw that it was very important to keep Grandma focused.

When the doctor stepped out I went after him and asked if he had read the letter and knew that she was moving. He said he didn't see the letter. He looked in his notes and then read it and a told his nurse to prepare the TB test. I was so surprised that he was so firm with Grandma even though he hadn't read my letter and didn't know yet what we had been dealing with. I felt so validated that it wasn't me just wearing out, my grandma has really become more difficult.

When I got home the doctor called to talk to me. He said that board and care facilities might not choose take people with serious mental illness. He said since bipolar/schizophrenia was the primary diagnosis and dementia was secondary, he was going to put on the forms that dementia was the primary diagnosis so that she wouldn't be rejected. I was stunned, I had no idea that she had a diagnosis of schizophrenia!! He said she fits the description and definitely has psychosis and bipolar disorder, but her symptoms overlap in many ways with dementia so we'll just go with that. I was grateful for that because the last thing I need is a curveball right now. I already told the lady from the facility that Grandma is difficult and defiant and I expect her to get worse and she made it sound like they are prepared for anything with dementia patients.

We are getting all our ducks in a row and filling out all the necessary paperwork to move Grandma out on Friday or Saturday. Now that I know I'm looking at schizophrenia a lot of things make more sense now. Her hallucinations are a lot more elaborate and detailed than what most dementia patients have. Sometimes people with dementia will fill in the gaps with their imagination when they can't make sense of something. Maybe they see some thread in the carpet and think it's a spider, but it's very unusual to see " a little troll wearing a leather jacket sitting on the dresser and munching on her pills." It is so very difficult with the mind and mental functions fails before the body does. Physically my grandma is in good health. At the age of 86, the only medications she takes are for her psychosis, anxiety, and sleep and yet all she talks about (more like cries and screams about) is how she just wants to die. Tragic.
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So, there is even more to the "back story". Your grandma has been diagnosed with depression severe enough to I have over a dozen ECT treatments? Whoa. In years gone by, before the laws were changed, your grandma would likely have been in a state (mental) hospital. You and your family have been saddled with the caretaking of a mentally ill person for too long a time. The average "civilian" is not only unequipped to handle a mental patient, but its not a job that anyone can do 24/7.

55 years ago, we had family friends that moved to Porterville California. The mom had the need to find work, yet the area up there was largely agricultural. There was, however, Porterville State Hospital. Even in 1958, in an economically depressed area, they were hard pressed to keep employee. This friend got her LVN through on the job training. Most of the nurses there, including this lady, burned out in about 5 years. It what is all they could handle. AND, they were taking care of unrelated people and only 8 hours a day.

I'm hoping you read that story with the realization that you and your family have really been put through it, partly due to our healthcare system, partly due to federal laws, but that you have performed admirably, and it is beyond reasonable that you have chosen to be done with it. Grandma is one of the lost souls out there who is truly mentally ill. After you get her placed and leave her alone for a while, IF she is able to adjust, you may find it possible to visit and try to relegate her behavior to the past. It maybe that your dad remains involved edited ministrative level, but no matter what, you and your immediate family will no longer be responsible for the day to day care of this pitiful women.
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It really is best that your family have grandma care for by those who are equipped to deal with it. My mother has bpd. There is no way she could live with family either.
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My grandma takes seroquel twice a day and ativan as needed every 12 hours. She has been begging to ramp up the meds but her doctor refuses. He says grandma wants to be snowed all the time and he won't be a party to that. It will be nice if she can ever get on hospice because then she can take a lot more medication.

Grandma has exceeded the limit of shock treatments that are considered safe. She has had them throughout her life. During her last session she was given 14 treatments and still not responding, so they then gave her four more and she finally came out of it. My dad said her behavior is starting to mimic how she acted before shock treatment in the past.

When we first moved in a few months ago she was doing so much better. I think it's because she was still in charge of dispensing her own medicine they way she wanted, not the way the doctor said to. Her behavior drastically changed after I removed the meds from her room and started dispensing them myself. All I've been hearing ever since removing the meds is her whining and begging for them back and her telling me that I'm giving them wrong.

The place she will be going does accommodate dementia patients. Unfortunately, she never loved my mom and that's been a well known fact. I just wish my mom never put up with her for as long as she did. After my mom died my brother took care of grandma. She made my brother insane and his life was hell so he moved out and I moved in. There are now no more relatives who can care for Grandma. She's burned all her bridges. I do feel sorry for her though because I'll have the ability to move on with my life and find happiness again but she will always be trapped in that chaotic mind of hers.
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I am NOT saying this to garner sympathy for your grandma, please believe me on that. But when she said she was glad about your mom dying, I don't believe that's what she meant. She is in a stage of her dementia where self orientation is all she knows (and it sounds like she was always liked that anyway, and dementia just brings out the worst of the worst behavior). When she said that, she just wants to a lower level, pulled out the stops so to speak, in order to get her way, which is her goal because she can only think of herself. Such a sad and at the same time disgusting state of affairs.

And DO be careful for yourself and your family until you get her out of there. I'm sure you remember what you've always heard about how dangerous wounded animals are? From her perspective, she's been wronged. She's feeling very wounded and you need to be aware of her behavior relative to that.

I hope the place you are planning to locate her is a locked memory care facility. Anything elf will allow her to try to escape, which is no good. On the day of placement, if your husband and uncle get her to the facility and she refuses to stay, DO NOT allow her back into your car. Have it locked. Let her flip out if she's prone to do that, perhaps even strike out at someone, and you can get a 5150 for sure. Your dad can attempt to reason with her with an either or situation: mom, either you cooperate and let me continue to oversee your care OR I'm turning you over to the state and you will have a public guardian.

This is so tragic. I'm wondering if you don't get cooperation from her doctor. it sounds like she should have been diagnosed and had medication to calm her down long before now, long before it got out of control at this level. There is such a divergence between what the caretakers know and what the outside parties know, be they detached family members or medical professionals with limited dementia experience. Sad & so destructive for your family. I hope all the hugs I'm sure you're getting will help lighten your load!
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Nobody, I don't care what state you're in, can force YOU to care for someone either, or keep them in your house against your will. If it comes down to it, abandon her to the state. Then she's their problem, and they'll have to deal with her. You're right to get this loony tunes out of your house and away from your kids.
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Legally you can't force anyone to stay in a facility without a conservatorship in California. Most facilities work with resident to calm them so they get over the idea of leaving. My mom was an escape risk for the first few months she was in memory care...she wore an alarm wrist watch plus the doors have alarms with a code for visitors to use. I don't know about board and care...maybe someone else will have info.
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My dad has POA and he's going to fill out the paper work for the board and care. If she has a major psychotic episode before her big move then I will call the police and have her 51-50'd (put on an involuntary psychiatric hold). If my dad has POA then she can't refuse to stay at the facility, right? I guess our back-up plan would be to transfer from the hospital if we can't force her to stay at the board and care.
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Has she been legally declared incompetent? Does anyone have Medical POA (Power of Attorney) over her? If Not, you may drag her to the facility, but if she decides NOT to live there, they cannot force her. That is why a lot of people wait until their parent lands in the ER. From there, they request for a full psyche evaluation to confirm if they have dementia and is incompetent. Based on their finding, from there she goes from ER to the facility.

If she goes to the facility and she refuses to stay, where will she go? You may need to have a back-up plan.
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Aisha-
Remember too, what so many have said about how to make it easier to get into a facility, straight from the hospital. If she has something, anything happen medically or a psychotic episode, use it to get her into hospitalized care first. Then it will be on the medical pros to be the bad guy.
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I am being very cautious with her and the kids. I'm keeping a very close eye on grandma and have been watching and waiting for her to do anything stupid so I could call the cops. I won't hesitate to do it if she gives me a reason. I have been downplaying our plan to relocate her and am acting normal hoping she thinks I'm bluffing. I even bought her cake today and was talking very nicely to her so she would just forget what we said about her moving out. She seems to be much more relaxed today and hasn't acted up.

All medications have been removed from her reach. My grandma had a suicide attempt before moving here to my parents home six years ago. My concern is that she'll try to overdose herself and her son so that she can take him with her. She sees him as her property and he's the only thing she's ever been able to control in her life. She is very threatened by being separated from him.

I turn off the hall light at night when she really needs it on to use the bathroom at night. My husband and I would rather her get up at night and fall because it's dark than have her see her way into mischief. It's terrible that it's come to this. She is 86, has poor vision, unsteady on her feet, and that makes her a lot less scary. Still, she has the ability to throw things, and improperly dispense medications. I'm choosing my battles with her very carefully because most things don't matter so much when I know I only have to tolerate her for a few more days.

I am going to call her doctor first thing in the morning to get a TB test. The board and care we decided on needs to have the results before taking her in. Those results will probably be in by Wednesday and I hope to move her out as soon as possible. This just can't happen soon enough! Our plan for transporting her is to not mention anything about it the day of. I won't pack her things in front of her. I will just bring her stuff once she's left the house. My husband and brother are going to get her in the car and take her. My husband does not want me to drive her because he fears she could take the steering wheel from me, that thought really spooked me. My husband will drive and my uncle will supervise her in the back seat to make sure she doesn't do anything stupid.

Oh, we can't wait for her to leave!!! The kids have been talking about it all day and want to know what day she'll be going.
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Just don't let Grandma know she's leaving your house until the time has come for her to leave. She sounds like she's capable of anything. Keep her in the dark until the last minute. Good luck - it sounds like you've absolutely made the right decision for your family.
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Way to go. This takes guts of a kind few demonstrate as they are saddled with angst about the 'poor relative'. Just curious: how are you physically going to remove this woman? You think it is within her capabilities to poison your uncle (watch your own food!!!!). You may find it will take the police to remove her.
Whatever you do, do not buy into any crap she hands out, trying to fix the blame on your or anyone else in your family (also, make sure you keep one hell of an eye on your kids). If you think she could poison uncle I think she could easily murder someone else as well. Watch your back.
Technically if it could be sprung as a sort of supply that might help safeguard you a bit.
just think how happy your kids are gonna be if you have second thoughts.
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Aishamama-no it isn't horrible to not want to visit. You. Have already done a great job taking care of her. I am sorry you and your family have had to deal with so much pain. You get your life back and take care of your children. Hugs to you.
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Thanks Countrymouse. I don't feel I'm going to get past the fact that my grandma is glad that my mom died. I have a hard time giving her the victim excuse because of how many people she victimized. We'll see how things are when the dust settles. Hoping to have her moved to a home this week. I feel a mixture of elation and anxiety. I'm so excited that she will be leaving but am getting heart palpitations and am really on edge with her in my house for now. Every time I hear her walk around I follow her out to see what she is going to do. I can't wait for this to be over.
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First get your grandmother re-homed in a place where she can't wreck your and your family's life any more, and where she can get the care she needs. Best for everyone. Then, later, once the dust has settled, see how you feel about her and whether you can forgive the havoc. Just… don't forget that she's a victim, too. Hard to remember when she's right in your face, I know. Hope you find a good place for her very soon. Big hug.
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Sharynmarie- Is it awful that I feel like I never want to visit her again after she moves? The kids don't care to see her, nobody besides her son will want to see her again.
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Aishamama~I am so happy for you to be able to make this decision with family support. My mother has always been very difficult too, that is why we placed her in a memory care unit. She is only combative and difficult with family. You deserve to have your life with your family and visit grandma, advocate for her while you have a life of your own. Blessings to you!!
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Thank you bookluvr! I feel so blessed that my family understands and supports me. They know this is very hard on my family. They know my grandma is awful and it didn't just start with her dementia. She has always been this way but it's getting so much worse. As you mentioned, this will only progress to get worse and possibly violence. I'm not taking that chance.
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Jeannegibbs and StandingAlone- thank you both so much for your support. It feels good to have made a decision and to feel so certain that what I am doing is the right thing. I felt a lot of guilt before because she is my grandmother and she has dementia, but my husband told me to never make decisions based on guilt and my best friend told me that Grandma lived her life and now I need to live mine. I feel a lot of support from my family, friends, and this community. That really helped me to go through with this.

I just want everyone here to know that YOU are worth caring for. Don't let the people you are caring for take your vitality and happiness away. Don't endure abuse just because it's family. Nobody deserves to be treated this way.
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