Sent sitter home this afternoon. Need advice.

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Sent sitter home this afternoon. Need advice.

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There are already 29 answers as I'm writing this and I apologize that I don't have time to read them all, so I don't know if someone has already said this:

Many people are averse to medicating their LO and even doctors are sometimes hesitant because of side effects.

But when it reaches this stage, medication is not only necessary to allow the patient reasonable personal interaction with others, but also we have to think of the mental turmoil they're suffering everyday because of their own confusion and aggravation...

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I'm sorry. Thankfully, she's in a nursing home and THEY can handle her, even if you feel she's out of control. She sounds a bit like my mom a year ago when she was refusing her meds (psychotropic) and was still walking -- she was a bit of an uncaged animal -- delusional and spewing outlandish stories. She was very hurtful to me when I'd visit -- so I cut my visits in half and left when she got ugly. She broke her hip last spring, I changed nursing homes with better facilities and closer to her old neighborhood. All was going really, really well -- laughing, teasing, telling me who friends were -- unbelievable change. Then last month Medicare docs said to lower her drugs to 1/2, then to move her off the psychotropics to a "well-known, commercial" drug. Last week I noticed that she is very agitated, unable to focus, and was starting to be suspicious of those who care for her. The CNAs (bless them for the work they do!) told me they also saw a change. I talked to the charge nurse as well. All could see the change. I live 75 miles away and I will visit this week with my daughter who's visiting me. I am dreading it because I don't know who I am going to be seeing. To top it off, my mother and I have had an estranged relationship all of my adult life. I lived 3 states away until 2015, a year and a half before her dementia took over and demanded she have 24/7 care. It's not been easy to make decisions for someone who you've never discussed life's challenges with, who's never believed she'd be in a nursing home, who never went to a doctor to my knowledge (no medical records for her!), and whose general personality was negative and suspicious. She was the Classic Know-It-All. UGH!!

Your story, has triggering my need to vent (apologies!), but also to say that your mother is in the best place possible and you need to take care of you. Your mother's mental health is out of your hands -- leave it to the NH -- visit when you have the energy, but leave the building if you need to. Don't get caught up in your mother's mental health decline. Know you are there when they need you to be, and in the interim take good care of YOU!!! You are doing the best you can for your mother...

Blessings for the coming Season!!

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I feel for you! My dad too could be quite angry and verbally and physically abusive to the NH staff and at times lash out at me.
First you can’t force her to take medications. What’s the worse that can happen if she doesn’t? They say dementia medications are that effective anyway. Sounds to me like she needs something for her outbursts. When dad was on hospice they put him on a medication for that but can’t recall the name.
Your mom doesn’t need a sitter for pity's sake. That’s why she’s in a nursing home. Your mom has a broken brain and has lost her inhibitions. I can’t blame you for not visiting. It doesn’t do her or you any good. So don’t feel badly for staying away. Just keep in touch through hospice. And ask the nurse to visit with the doctor about a medication to help her outbursts.

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Unless you are one of those "anti-med" folks, I would speak with the doctor. They can give her things to calm her down. It's not good for her to be acting that way and not good for those who have to deal with it. Medication would be the direction I would take if it were my mom.

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Count me in the “anti drug” group. I’ve been primary caregiver to too now. The meds might help in the very early stage, but profoundly affect them with nausea and diarrhea after short time. That results in depression anger and “bad behavior”. Not a fan.
The “sitter” is a joke, at three SNF they’re called slang bc they do nothing but sit on their phones all day. You did her/him a favor. If your mom is in a NH leave her alone. They will adjust any meds needed trust me.

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I would definitely have the home redo the urine analysis to make sure her UTI is gone. The behaviors you are seeing are common with someone who has a UTI. That being said if these behaviors are not new behaviors since the onset of the UTI then what you are seeing is the result of her dementia. When someone has dementia it can affect different parts of the brain. Depending on what part of the brain is affected will determine the behaviors that a person has. I have had preachers who never cursed a day in their life who got dementia and started curing like sailors. Their wives were horrified because they had never used that type of language, but it wasn't them it was the disease that was causing the behavior.

As far having a sitter for your mom. I would not! I don't see why you would want to incur the cost of a private sitter especially since your mom is not benefiting from the visits.

You need to put your needs first. That is not in anyway selfish of you. You may at some point be needed/wanted by your mom. If you are burned out by trying to be there for her at this point when she is not responding to your visits, then when she wants you, you may not be able to see her. I have had many of my caregivers die before their loved one because they did not put themselves first and take care of their needs, If you have a family their need as well as your own must come first!

Please keep us updated on your journey, know that you are not alone.

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I completely agree. There are some antibiotic resistant UTIs out there and though she was treated for it doesn’t mean she was cured.

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I feel for your situation. I hate to say it but if the sitter was reduced to tears, she has lost her professional edge and has allowed this to become personal. It might be best to find a new sitter and give the other one some respite. Sometimes, when an aide becomes too familiar and allows personal feelings into the case, they can be more a hindrance than a help. Caregivers need respite and time to step back, just like family members. What I wouldn't do is leave her alone in the NH if you are that concerned for her. Your number one concern should be the care of your Mom, not the income of the sitter or the NH opinions. JMO and good luck to you.

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My aunt has two caretakers besides family. One can handle whatever comes up. The other not so much. Some people are just better at the job. On occasion my aunt fires and rehires in the same conversation. One can convince my aunt to change her clothes, take her meds etc when the other one will throw up her hands.
This last week I observed them meandering towards the bedroom (and all the dreaded chores) holding hands and singing a song from aunts childhood. So sweet. The other one will write in the log “Very stubborn today” and call it a job done.
It sounds to me like you need a break and maybe the sitter did as well. If she throws things, remove what is likely to cause harm. I suspect she’s eating something. Make sure nothing is offered that doesn’t have the agreed upon meds stirred in but the NH will figure that all out. If she’s not eating she will get weaker and easier to deal with at some point and then perhaps a reset of sorts can be achieved. Not ideal but perhaps all that can be done.
Go out for a walk and remember to breath before you visit. Work off some of your anxiety first and you will have a better visit. Perhaps you can see her without her seeing you. That might reassure you without upsetting her. I know it’s hard. It truly goes back to basics. Take care of you and remember the serenity prayer. And one last thing. Try not to talk about it to everyone in your orbit. Give your brain a rest. Allow more peaceful thoughts. If you have to, clean the oven or polish the furniture. Use the energy in a constructive way.
Hugs.

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I am SO sorry you are going through this .. I can relate to a point. I am also only child & my mom has always been narcissistic & controlling b/c of her childhood & just b/c she could never admit she had a problem .. everything is 'her way or the wrong way', after decades of personal healing & growing myself (living in different city)
My dad died 17 yrs. ago... I'm not getting it to it, this is your post and I don't feel like rehashing my challenges here now ... just to say, I can relate. Mom's health went down badly & in march I brought her here where I live (In Canada) Got her house sold, she is in a nice independent living seniors community where 3 meals are provided in dining rm, all living expenses that relate to her suite are taken care of ... only 1 bill - she was happy about that. I have managed to bring together ALL of her bank accounts from previous & from sale of house along with other small investments and our Financial planner, who we have a swell - has come up with a wonderful financial plan that will use the principle proceeds from her home and generates interest that helps pay for her $3200 p/mo. rent (will go up if more care is needed, right now she has no care - she even broker her hip in July and has come back pretty well - she's a survivor!)
Thing is she is forgetting and becoming more and more discontent as she is gaining weight and becoming stronger .. we had a new will drawn up & she is going off BIARRE since (that was last wk) her ugly, evil martyr self is coming out. Haven't seen it since last year when she was in her home and miserable - lashing out at me.
Rambling but I am getting the WRATH of Donna now, I do all the banking, everything .. I have a few concerning things going on but I also have a great counsellor I've been working with and she is helping me assert my healthy boundaries & standing up for myself KNOWING I am doing everything from the highest integrity & intention .. hold on - it's a bumpy ride & we don't know how long it will be .. MAN, this is the TOUGHEST assignment I have ever taken on & I've been through a lot of shit with her over course of my life..
Good luck,
No stern words for you ... just hold your boundaries & stand up for yourself .. any sign of weakness - gives room for them to see, smell & pounce !!

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I have had the same problem with my 86 years old mother. She can barely get around now and has fallen more times than I can count. We had a paid caregiver visiting her daily for 3 to 4 hours, mostly for my piece of mind, and she would send her home too. I live a couple of hours away and I have Parkinson's and the stress was taking serious toll on me. Bottom line, when she became difficult and passive /aggressive towards me, I called a family meeting with the remaining family members and told her she was going into an assisted living community. We didn't give her a choice. I'm the lonly living child she has left... she already ran my brother into an early grave because of her constant complaining and unhappiness. I refuse to allow her to do the same to me. She is my mother and it is my responsibility to see that she's taken care of..... if she's not happy then that's her problem. She is like an ungrateful child and my children were never allowed nonstop habitual unhappiness and complaining and I'm not taking from her. If you're wondering if I feel guilty about this whole situation... the answer YES everyday but it's getting easier.

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I have no guilt or regret over my mother going into permanent care. My siblings and I have copped the usual verbal and physical abuse, silence, tears, accusations, everything that goes with dementia. The more mother exhibits those symptoms the more obvious it is that she is indeed best cared for in a memory care unit. It takes special training in dementia and even then it requires far more patience than I, or my siblings, could ever exhibit. Congratulations to you for gradually letting go of the guilt. It is not your fault, nor is it your mother's. It is this bloody insidious disease called dementia, no matter what the type. And there is nothing anyone can do about it, we all just travel the rocky road the best way we can - especially if we are given the support of a forum such as this one.

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If she is on a statin drug, you should know that one of the side effects is memory loss (been there, done that). Probably the fewer meds the better.

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Oh come on! I think there's a bit more going on here than a side effect from a statin, don't you??

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Sincere thanks to all those who posted. I can't begin to address all the thoughtful advice and concern for me. It helps a lot to know I'm not alone. To those that haven't read my previous posts, my mother has been medicated up until the last week when she started refusing all meds. They've tried putting in food but not had much luck with that. Hospice nurse told me this morning that she may be in the "terminal restlessness" stage. Last night she slung pictures off her dresser and broke frames and ripped a slat from the window blinds. Hospice is able to rub a cream on her wrists to help calm her but it's not a fix all. The sitter came back after a little break and Hospice says it's good somebody is with her for one on one. Sitter has been "chasing" my mother around in her wheelchair this morning while she is going from hall to hall trying to find someone that will listen to her trash me and my husband (about "stealing" her money etc.) Her mouth has turned rancid saying things like my husband must have gold on his....... I truly appreciate all the advice and sympathy. I'm staying away more, only visiting 1 or 2 times a week. Hospice has told me it's "make her comfortable" now even though she's raging out of control sometimes. The sitter says she can take it (think she doesn't want to give up money) and I get a little peace knowing somebody is "watching" her and she doesn't destroy the place. Maybe just her room. Please pray that God will intervene and give my mother and me relief. My mother could be controlling and hard at times in her earlier life but I never dreamed it would end like this! Her personality on steroids is what I say.

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Why not ask Hospice to give your mother some Xanax or other calming medications at this point? When my father got agitated, Hospice stepped right in to give him Ativan which helped him tremendously. I don't understand why they'd let your mother go on like this.........?
Sending prayers that God does intervene here SOON and end this suffering for all concerned. Sending you a hug

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Goodness me, are you sure it is not my mother taken over your mother's body! And that includes the violence right down to the picture frames. Except that my ''frail'' 93 year old mother pulled several metre x metre heavy glass-framed photographs from the facility's walls despite barely being able to stand. (Had been sitting in her wheelchair dragging herself along with her feet). It took several days for the maintenance people to fix the plastered walls and get the pictures back up, only to have her do a repeat performance the same night. Then she progressed to the fire extinguishers, a whole new story in that one.
If there is no underlying infection such as UTI, pressure sores, teeth issues, or pain such as constipation, might I suggest it could be delerium or even psychosis. Just because the current UTI has been dealt with, it does not mean that any delerium associated with the infection automatically passes at the same time. Delerium can take days, weeks or months to dissipate, and it is apparently difficult for medicos to decide if behaviour is due to dementia or delerium. It is only after total recovery - if it is ''only'' delerium - that they are more certain.
My mother was placed on respiridone, an anti-psychotic drug. Not sure what the US equivalent would be (I am in Australia). That eventually worked very well, every time she was taken off it her behaviour descended into hell again. She has finally been weaned off it after about 6 months and mother is, touch wood, back to ''normal'' dementia behaviour.*
She also has a permanent patch for pain, the dosage has been upped.
My only other suggestion when you visit your mother is use a time-out. When she becomes difficult tell her she is being ridiculous and leave the room for a few minutes. If you have something to distract her when you return you might get a better reception, there again, you might not. With my mother it is either a bottle of strawberry milk or a full on milkshake. The staff even use that distraction. So far she has not thrown it at anyone, indeed, one cannot get the container away from her until she has sucked it dry.

* I would caution that respiridone in particular is contra-indicated for Lewy Body. Not sure of any other anti-psychotic drugs are suited either. In Australia we currently have underway a Royal Commission into the aged care system, and this drug is going to be restricted to 12 weeks with very strict guidelines if it is prescribed for longer periods. It is classed as a 'chemical restraint' and restraint is a big no-no with treating dementia in nursing homes and aged care facilities, although hospitals do it routinely here.

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I would talk to her Doctor and put her on some hallucination or psychosis medications To calm her down. My mother use to put it in my father’s desert because he will refuse to take it but that was the only way my mother would get some rest. I wish you luck🙏

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Yes, I agree she needs something to calm her even if she is a little out of it. This is an anxiety and its not fair to her to be anxious all the time. My Mom started to hum. Started out softly and then each day it got louder and louder. And she wouldn't stay in one place. It was the beginning.

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The anger/outbursts, if not really evident prior to the UTI, could be either continued UTI or part of her progression of dementia (there are multiple causes of dementia, and the affects and behaviors can vary not only with the type but with the individual.) Hoping for you that it IS another UTI. Waiting for the next stage to get beyond this behavior could take some time.

Since she is refusing meds, this will make it harder to treat anything she does have, including adding anything to calm her down. I wouldn't worry about the so-called dementia meds (is there really anything?), but for the BP and thyroid meds, have them check her BP and thyroid levels - perhaps some can be cut down if not eliminated. Our mother takes 3 different BP meds - I would not want to see what would happen should she decide not to take them. Maybe they can tell her that taking this or that medication will harm you in some way - perhaps that would entice her to take them? Sad to think about, but if it works, why not? People always say you have to live in their reality...

If at all possible, have them do a urine culture - sometimes it is still lurking in there, even though it seems to be "cured." When I first joined this forum, I scoffed at the UTI comments, until it happened to mom. She's generally quiet, sits and reads the paper, magazines, sales catalogs, but with that first UTI, off the rails! She had to take Lorazepam (anti-anxiety med) every afternoon before the ranting/raving started. Once her UTI was gone, she went back to the quiet reader and didn't need the anti-anxiety meds - we keep them on hand, as needed only.

More recently was nighttime bed-wetting. Once she got through the UTI meds, it stopped. It is bizarre what UTIs can do to those with dementia! They suspect she may have another now... If they do confirm, I might suggest they culture it too - this is done not only to catch the sneaky bacteria, but to narrow it down to use specific drugs and perhaps extend the treatment period.

As for visits - if all she will do is rant/attack you, I would suspend all visits. If you really feel the need to be there, be a fly on the wall, just to check on her and observe. IF they find a way to treat her and she calms down, you can always try slowly to resume visits. You can only do what you can do and if it is better for both of you to stay away, then do that, with no guilt or regrets. You have done the best you can.

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You are so right about having them treat her anxiety. They never could find a drug to actually treat the dementia. It just doesn't work. They tried all kinds on my Mom to no avail. They did have to give her anti-anxiety meds though. I even insisted on it. My Mom use to count to 100 over & over and said she didn't know why she was doing it and it yelling help a lot when not really needed for a cause. The anti-anxiety meds were light anyway but they helped a little bit. Those UTI's show up often in the elderly in nursing homes too so you are right about that too. Mom was being given the wrong meds once and that was why she still had it. But the bottom line on dementia is that there is no real "fix it" drug to take. They tried several types on my Mom. Nothing worked.

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If you want to check on her but not get her riled up try using a disguise - dress like someone either much older or younger, wear a wig, come in using a walker & walk slowly, tie a scarf around your head .... just anything so that she doesn't know you - check out thrift stores

You can then monitor her for your piece of mind without setting her off - if she says that you remind her of her daughter just say 'that's a nice thing to say' but change your voice somewhat possibly do a hoarse whisper

It is hard when the dementia person turns on their helper - my mom started to accuse me too so I started a campaign to change her mind by always arriving with a treat - you can be 'thief' & 'bringer of treats' at the same time -

I brought 1/2 decaf coffee & 1/2 hot chocolate from Tim Horton's & bought it about 15 minutes before I saw her so she couldn't burn herself if she spilled it on herself - slowly she started to smile a bit then a lot when she saw me - I didn't always bring the same thing however -

A dog ball from dollar store to exercise her hands, some silk flowers in a metal vase so I could add to it when I was stuck what to bring - a few times I would bring in paint samples etc for her advise in helping me in to choose a decorating item [just verbalizing it to her clarified it in my mind too] - not over night but a few weeks did it

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IMHO, your mother does not need a "sitter" since she's in an NH.

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Agree

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I had a sitter coming in when my mother was in the nursing home too and felt better having somebody there even if it was for just 4 hours per day. But, as Medicaid came into play since we had spent down her money paying the nursing home until we reached her $2,000, we just couldn't afford to keep paying a sitter so I stopped it and it went fine. I think the sitter only makes US feel better since the parent has dementia and has really bad days where they fuss and rail about most everything. My mother was trying to get up (she could not walk due to her rheumatoid arthritis) and she would fall out of the bed and geriatric chair and twice we were in the emergency room with a big knot on her head. BUT, that comes with it and I watched as others go through the same thing. So please don't feel bad about eliminating the sitter and don't feel badly about not going as often either. At this point, you cannot make a difference anyway and she just hurts your feelings in her state of mind. I read these and remember how it was with my mother. I am so sorry you are going through this. Sometimes I think I should sit down and type up what I want if I ever come down with dementia and all so that my son will feel better about anything he has to do if I start getting like this. Many of us on this forum have experienced this with dementia parents and situations vary, but the end result is always confusion for the adult child or spouse in knowing what to do and everybody second guesses themselves. We understand and most of us who have been through this with a parent already know that you need to have time for yourself and that you can't go for an excruciating visit often because it isn't healthy for you and you matter too. Just make sure she has what she needs (anything nursing home doesn't provide) and check in with the staff and hospice by phone so you are not wondering or worrying. It will be fine. Best of luck to you.

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I am a firm believer that if people do bad things, behavior, abusiveness, etc., first you try to "fix" things but if no matter what you do, then wise up. I do not care why they are what they are - the fact is they have no right to destroy and make life miserable for others. You must be strong and get up and walk away. People like this simply do NOT deserve anything. They destroy everything in their path and will destroy you too. You do not deserve this from them. Be strong - walk away and live your life. You won't regret it but you will if you allow her to destroy you.

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Sent sitter home this afternoon. Need advice.

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