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Let me start by saying it took 35,000 dollars worth of test as well as a psych evaluation for someone to even listen to me and guess what??? I'm not crazy nor am I wrong!! I just simply wanted some feedback!! I know my ma like no other and she gets violent WHEN SHE HAS SOMETHING WRONG other then her dementia!. I can tell just exactly if it's a change within her disease or if it's something else!! Her baseline is pretty much forgetfulness, reccuring questions and a few other things but never any kind of anger or violence! The situation is this.....when I start to see the signs and behaviors of something other then a change within her dementia, I've gotten her tested for a uti...this is before she becomes violent and every time it's take EXACTLY A WEEK AND A HALF to FINALLY show up in her urine tests. I've been trying to find a way for her to get some sort of preventative medication. She takes a bath every day and I help with both bathing as well as the restroom but she has accidents and sometimes I don't know right away. I asked for a psychiatrist to visit us in the hospital as well as have had a social worker come in just to make sure I'm doing everything correctly!!! And as far as placing her and just " moving on with my life" I REFUSE to ever do that until she's bed ridding and even then it's questionable!! Point blank, I took her in the last time she was getting to be a danger to herself ect and seen just what happens when someone else takes care of her when she's in her " spouts"! I left to go take care of some things at home and to shower after she fell asleep, I came home got things done and called about 3 hrs later, then the nurse tells me I don't know if you were informed yet but they had to give her ANOTHER shot and put her in restraints!!! I went up there immediately to find out what was going on.... they over medicated her, as she's highly sensitive to ANY FOR OF MEDICATIONS... it's always effects her in a very different way, anyway they over medicated her and put her in restraints and she had bruises and claw marks on not just her for arms but her shoulders neck and back and was still in restraints when I got there.... suffice to say from that morning on, I asked weather I was there or not that they have some one else sit with her...I know she woke and was confused and scared and instead of speaking or trying to talk her down so to speak, the nurse freaked out when she started with the high anxiety and freaking....I've been trying different things to soothe her some work some days and others work the next but there's no way in hell I would let someone else take care of her! Ive learned so much and it's scary to think how some PEOPLE and DOCTORS and nurses just have no clue or time to spend to see that every person is different when it comes to this disease. I'm thankful to be here even after all the complaining and feelings of loneliness....she's my mother and has went far beyond what is called for as a mother, therefore I refuse to just have " her placed in a facility" which to me is scary and leads me to wonder if she didn't have me to be her advocate, what the hell would have happened and how many others are just trying to find " a mixture of drugs" that would work when it's not even part of the disease really, the behavior is caused by something else.....

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You are correct, staff cannot know their patient like family does. They must rely on test results & the behaviour they meet.

No-one is going to understand your Mother or care for her as well as you can. What a blessing for her but also so hard on you because you just can't do everything or be everywhere.

That word you used *advocate* is excellent. To me that evokes aiming to steer the best course.
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Hi, Cinnerwags. As to nursing personnel staying with your Mom? That will seldom happen. I think you must know that in an facility a nurse cares not just for your Mom but for probably average of 5 other patients as well. She sometimes has the help of a CNA, but she often does not. Private duty nursing therefore is called from an outside agency with 24/7 nurse of "sitter" is needed. This is enormous expense and a hospital will not pay for it in most cases; the cost goes to supplemental insurance and families, usually to the latter, and the cost of that is very very high. Even for only a sitter, who in the case of a combative patient will often throw his or her hands up and leave.
Restraints are almost NEVER used now, and are almost illegal. They require 15 minute checks at the least, and usually zip in "veil beds" are used in their stead.
Your description of what happens to your Mom with the administration of any psychotropic needs to be part of her allergy records. I know exactly what you are talking about, and this "adverse reaction" happens to many, including my own brother. He was in a car accident with injuries to his head, he was agitated, frightened to out of control, and they gave him ativan which for 4 hours had him not relaxed, but somewhat a madman. It happens, and should be on all her admission records from now on.
I am so sorry about what you and your Mom are going through. I don't recall your first post nor whether I answered to it now; someone more computer literate than me will likely dig it up and post the link to it.
The more information you can give us in a post, the more easily we can attenpt to answer with anything that makes sense. For instance I wonder if people answering your first post understood that Mom is normally fine, but a UTI will send everything into scramble. That is the case with UTIs as we know often enough.
You might consider D-Mannose trial. Capsules are large to swallow, but tasteless powder can be removed from capsule and put in any drink or food. It works much like cranberry but without acid and volume, to keep bacteria, esp ecoli from adhereing to bladder wall. It is about 30.00 on Amazon (I use Source Natural) for 120 capsules, so worth a try at least. I got very frequent infections for a year, about 5, which traveling of infection to kidney. I haven't had an infection in decades since I started D- Mannose, and as an RN lifelong I am not really a supplements advocate.
You say you would never consider placement. That surely must be your own choice for your own life. I think that you will find few of us here who will judge your own choice for yourself being surely after this time an informed choice. My own limitations would not allow me to do this hands on care 24/7, for certain.
I am so sorry for all you are going through and wish you and your Mom the very best.
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You have to be your Moms Advocate. They were ready to take my Mom to Rehab after a UTI. Doctor released her Thur morning for Friday discharge. I went in to find her sloutched down in the bed, breathing funny and out of it. I went out and said something is wrong and told "she is going to rehab". I went to the nurses station 3x and was told the same thing. Finally the Nurse came in and asked me what She thought I should do. I said call the doctor and tell him she has done a 180. She did and he talked to me. Got her another day. (There is another story there). In the meantime, I sent a picture to my RN daughter. She finished up her patients and came to the hospital. Looked up the antibiotic she was on and found it had Penicillin in it which the HOSPITAL records show she is allergic to. One of the first things they tell me when they admit her. "See here your Mom is allergic to Penicillin." My daughter took over and the Nurse couldn't be nicer. My daughter thought Mom was dying. Change in antibiotic turned her around. Rehab would have never excepted her, they would have sent her back.

I hate Hospital Doctors. They do not consult with the persons PCP. They change medications, add others on not knowing the person's history. Discharge, see your PCP in a week or two. Not anymore, I get an appt right away. My doctor knows me best.
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