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My mom has recently been moved to long term at the nursing home. She was living with me, my husband, and 4 children until I just couldnt care for her anymore as her PSP progressed for the worse. Now she doesnt want to be there and has been very depressed and manipulative. I am at a loss at what more I can possibly do for her. The staff at the nusing home is afraid of her because she reports them all for things they didnt even do then cries to me that they are mean to her. I have talked to the staff over and over and they tell me how she asks for her meds and they tell her its not time yet and she will cry and say they are mean and witholding her meds and thats just the tip of the iceberg on her behavior.

When I get there and she sees me immediately she starts crying and yelling at me that they are abusing her and I need to get her out of there. When i try to explain to her whats going on she just doesnt listen. I am at a complete loss and dread going to visit every time when I shouldnt feel that way. The visits consist of nothing but crying and accusations and how I abandoned her there which isnt fair at all because I tried so hard to care for her at my home but just couldnt do it with a full time job and 4 children. I feel guilty and at a loss at this point. I am not sure how to deal with her behavior anymore. My kids dont even like to go there anymore because they dont like to see how she treats me. She makes up stories such as yesterday she said the staff killed the woman next to her in the room and i said no I just saw her in the hallway. She was insistent that they killed the woman and then they wheel her in and IZm like see she is alive! Why is she doing these things? Has anyone else had these kind of experiences? She has some dementia but forgets small things it is not that bad and the staff feels she is manipulating me to get her out of there. I am at my wits end..its constant stress 15+ phone calls a day of the same thing. I would love if anyone can share similar experiences or ways they have coped. I appreciate any feedback!

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Is this change in her personality a recent change? PSP is a tragic disease, as I know you know better than I do. My first consideration was whether a behavior was caused by the disease affecting her frontal lobes. You know your mother, so you know if this is a change from her normal self.

Is it your mother or the NH calling you so often during the day? If it is your mother, perhaps you can screen her calls and talk to her when you have time. If the call is from the NH staff, they may not be skilled in handling the dementia that can be part of PSP, so are having problems. Perhaps you can locate a NH that is more skilled in handling what may be frontal lobe symptoms if it becomes too disruptive for them.

If your family and NH know that it is disease talking, you may be able to handle it better. My thoughts are with you.
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Thanks for your response and thoughts. The behavioral changes are not recent. My mom has always been the type that gets her way and will do whatever it takes to get her way so I know alot of the behavior is manipulative and she tries to guilt me into taking her out of the nursing home. The forgetfulness is definately part of the disease and I can easily deal with that. It is her abusive outrages that are taking the biggest toll on me. It is her hat calls all day and I have started to screen the calls like you said because it is too much to hear it all day non stop. The NH is really great honestly and I love the majority of the staff there. They are very honest with me and they do call to inform me when something is wrong. If she can not start to respect the staff or get along with them then I will consider a transfer but I feel like she will do the same thing somewhere else to be honest. She has pushed so many people away with her behavior that now everything is just left on me. Noone else will even bother with her including my 2 sisters so I am bearing the brunt of it on my own.
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I feel very bad for you, it is awful to have guilt loaded on the load you have already. Full-time job and four kids and spouse, full load. I think you should give yourself credit for all that you have done for as long as you could do it. I would think she would miss the big family, the kids and all. Does she have a priest or pastor that she favors? Maybe you can take her out in the garden and have a talk about how you aren't able to take care of her the way she needs to be taken care of. I think, maybe I am incorrect but with this kind of palsy, isn't balance and eyesight is an issue, you don't want her to fall and break a hip. Enlist the help of your doctor to get resources to help her adjust to her new living situation.
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Thanks Madeaa! I have tried to talk to her so nicely so many times and all she says is I dont want her and and i just cant seem to get through to her that I just cant do it anymore. The type of palsy she has is balance and eyesight problems and she is progressed to the point that she is wheelchair bound. When she was staying with me she would constantly fall out of the wheelchair because she would bend over to pick stuff up and it would literally take me over an hour to get her back in. I am 98 pounds and she is about 125 pouinds of dead weight. I ended up with serious back issues over it and she just doesnt care or believe me. I am going to take your advice though and give her doctor a call and see what more can be done to help her psychologically. If she would at least accept the situation that would be a huge milestone!
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Speak with nursing home and ask if they feel she is in the right setting. If they are in agreement and not calling you then leave her there. Another move will likely be just as traumatic and she will continue same behavior. Now that you've got her in safe healthy environment giving her the skilled care she needs ; give yourself permission to concentrate on you and your family. Set some boundaries and visit more limited time period, stop taking her calls. Tell her when you do visit that you love her, take some treats and maybe visit during a mealtime or when you can take her outside or in lounge etc --maybe she will be distracted and crying pleading will be less. Good luck. Please don't feel guilty, you've done the right thing and I'm sure things at home seem lighter and better now that she is under professional care. Take pleasure and peace in knowing she is safe. You can't control her happiness. Her unhappiness is not personal (to you) she's unhappy because of what is happening to her and life as she knew it has changed with the disease. Let go, and take time to care for yourself.
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I had to look up PSP because I didn't know what it was. Another flavor:(
I am surprised the nursing home is not handling this! They are the trained experts and why are they reacting to her behavior when they are supposed to KNOW?
Before you blow a gasket, I would go to admin and get it settled. Everyone needs to quit ENABLING HER on both sides. It is very sad, but if she is on the correct meds, she is safe, the staff is aware of her symptoms/behaviors--maybe they all need a class-- then all is being done.
You need to take some time to regroup for yourself, first, then for your precious kids and husband. Breathe deeply and often. xo
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I know a woman, that her kids had to take the phone away from her. I suspect that it is quite common. Of course, then she told her visitors that her son cancelled her phone - and made him the bad guy.
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I just imagine how I'd feel, and then think how would be comforted and assured.
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You have a very hard situation.
First: She will likely become better adjusted and more settled after a while. The way it is now is not the way it will be forever.
Second: See about getting her an antidepressant or pain medication to relieve the internal discomfort. It's easier to get her to take medication that she previously refused, especially if they don't tell her it's for "being mental," as the kids would say.
Third: Pay someone to visit her once a week. Ask for someone who is cheerful but not too cheerful, someone who will agree that her life sucks and then make her laugh. You can't do that because "it's all your fault." I know it wouldn't be cheap, but if you know a younger person or someone from the neighborhood who would do it for $20 bucks a visit, that might work. She will behave nicely to them because they are outsiders. It will improve her self-esteem and mood to be a charming person for an hour. You will have done something to make her happy, and can discard some of your guilt.
You are doing the right thing. Hang in there.
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