How to tell the difference between dementia behavior & manipulation? Mother throws a fit until I come to give meds, etc. instead of caregiver.

Cheryl, it’s so difficult and upsetting. Please check with her physician. She may need meds readjustment or the addition of something to keep her more calm. Try not to go over during or after these episodes if she has competent care givers, if possible. Take care of yourself and best wishes.

Since she can flip the switch and be nice when you do arrive, sounds a bit like manipulation. If it were solely sundowners, seems like she would just continue on her rant, whether or not you were there.

Do you want to go there every night to keep this from happening? Or do you want to set a firm boundary and have specific nights off? If you want nights off, you're going to have to set a firm limit. Maybe make a schedule? Tell her, tell the caregivers which days that week you will and will not be there. Then, hard part, you'd have to stick with it.

The caregivers would have to be on board with whatever plan you make to help you enact this.

Most of the things she is refusing to do might not be the end of the world. When she's hungry, she'll eat. Won't put on PJs? It won't hurt her to sleep in her clothes. Maybe after a few days of this, she'll get into the new routine?

Medicine for this? I don't really think so unless she is totally uncontrollable and unsafe. OTOH, maybe that is something to ask her doc about. Maybe in the late afternoon, BEFORE she starts getting difficult?

Maybe you could also call her at that time frame and explain (for example) that you are not coming tonight but are coming tomorrow night. Calmly state the facts, calmly say you are getting off the phone and do it.

I would say if your mother has been manipulative and given to fits for quite a few years, it's likely a continuation of the behavior.

(I suspect that a lot of people diagnosed with dementia actually don't have it - based on personal experience.
My mom behaved badly before. What we knew to be normal behavior, the doctor and nursing home called "dementia". It was frustrating to deal with them and her as a result; they did not hold her accountable for her bad behavior when they needed to; she got a pass because they saw it as "dementia". )
Regarding "sundowning" - I don't think being more upset at night is a sign of anything but "normal" - most people notice that problems seem bigger at night. It's really not an age or dementia related problem.

I need to ask the same question. In my case we left mom in care of the aide only to receive a call that she’s being irrational, telling the aide to go home, saying that her husband is going to get after her ( dad has been dead 6 years). We came home immediately and all mom could say was she was so embarrassed that she had know her behavior was bad.
She came out and apologized to the aide. So frustrating!
Is she using the dementia as an excuse? Is that even possible?
Btw she has vascular dementia.
Sorry to jump on your line Cheryl,
ill get my own thread if you want.
Carol

It sound like your mother wants you there instead of the caregiver. Your her daughter, so I am sure she prefers you instead.

She is happy to see you!

I became an accidental caregiver to my MIL 7 years ago. I have made one million mistakes and hope to help others learn from my mistakes.

It doesn't matter if it's dementia or if it's her being manipulative. Here's why: your LO is in good hands and she's safe! Trust yourself and the decisions you've made with regard to hiring her caregiver or placing her in an ALF or SNF.

I would not listen to my husband and his sister; they tried to tell me to not exhaust myself by running every time she called. The result? Exhaustion, too much wine and 15 extra pounds. I was turning bitter and angry by the hour. I am doing better now.

Don't train your LO into thinking you will drop everything to go running when she/he calls. Lovingly tell her that she/he is safe and that it's okay to have the caregiver administer pills, make the bed, give a bath, etc. Remind her/him that you were just there and you'll be back very soon. Be firm and loving.

PACE yourself for a marathon. I didn't. I sprinted thinking it would never last as long as it has. She's been discharged from Hospice TWICE! I think she has 19 lives! LOL

I beg you: put yourself first so you can stay happy and healthy for the long haul. (The old adage: put the airline mask over yourself before applying it to your child child may should like a cliche, but it's not!

Breathe. Nurture yourself. Trust your self. Good Luck!

I understand completely. My mother behaved very similarly for the last few years of her life. I caution you to keep your cool and be careful how you handle her manipulation. My younger three siblings turned against me in the last year of our mother’s life and rewrote her Will, Trusts, HCD, P.O.A. Without my knowledge. It’s been devastating because I was the one along with another sister who had cared for both our parents for decades while they were off living life to the fullest.
It’s tough to say whether it’s manipulation or sundowners but if it is possible have her tested for dementia/Alheimer’s. There are a number of stages of these diseases. I wish you the best. Remember keep your cool as it’s important for your own well being.

This sounds like manipulation. My MIL is both emotionally manipulative AND has some dementia, so you really do have my sympathy! I think it's a bit easier to see the emotional manipulation when it's an in-law and not my biological parent.

I do feel sorry for my MIL, and have sacrificed a great deal in the past couple of years for her, visiting regularly and cleaning for her, taking her out to eat, etc. But I have the nagging sense that she would NOT do the same for me if I were in need. I know my husband loves her and wants to help, but he basically feels the same way. She has had a pretty hard life, and has been basically emotionally absent to him (and to her other sons and all her grandkids) since my husband was a child.

My husband and I have been married over 30 years and fortunately have a great relationship, and now we and one other relative are all she's got. It's very hard, but setting clear limits/expectations has worked well for both of us and been good for our marriage. Taking care of cantankerous old folks is just NOT for the faint of heart!!

to answer your question- yes, there’s medication for it. My experience with dad has been with Rispirdone (aka Rispirdal). It calmed him down during his hospital stay (somewhat) as he was harassing the staff by getting up, following them around, demanding cigarettes, arguing with them about smoking...and trying to leave to go out front to smoke. (Did I mention he was going through alcohol detox!?)
he still takes the Rispirdal. He’s still feisty and rambunctious at times but I guess he could be worse.
There might be other drugs, but I’m only familiar with this one. Good luck!

Hey Cheryl.
"Sounds" like your mom knows what's she doing....
No matter though. Keep very good boundaries.
Do what YOU think is best for her and for YOU.
My father acts like a big baby when I leave him. I reassure him and then go!
I think they regress into child-like behaviors because they are vulnerable, dementia or not, and want who they are close to.
In my family, it's me.
I cannot stress this enough, You must stay balanced in giving. You know what is too much. Listen to yourself. Avoid burnout!
All the best to you and mom!

Lol Mother gets what she wants

As I read through all these very helpful comments, there’s one perspective I want to add — almost a healthcare training perspective. I noticed this when my Mom (with dementia) was hospitalized for a particularly virulent UTI. I noticed that many of the professional “caregivers” did not seem to know much about communicating in ways that got good outcomes with dementia. For starters, they would be talking loudly while they flitted around the room doing their preparations for whatever they were there for. This was very confusing to my Mom. So i asked them to experiment with coming in quietly, going directly to her, making eye contact and perhaps taking her hand, then slowly and gently telling her what they were there for and exactly what was going to happen next. This calmed her and got her cooperation at least 9.5 times out of 10. Next, they had obviously been trained to ask, “Okay?” At the end of every explanation, but they had not been trained to wait for her answer. So I asked them to humor me and not ask her a question unless they were going to listen for and respond to her answer. This helped enormously because she was given the dignity of “approving” the process — or not. I also suggested that when they were about to leave, they thank her for working with them. There was certainly more I could have taught them about how to communicate with her, but these 3 seemed to be their limit and they worked well enough to transform Mom’s experience. if you think from her perspective, the previous 3-stage process was (1) she’s lying in her bed peacefully in a quiet, calm room; (2) strangers come storming into her room - without her permission - making a lot of noise, wheeling funny-looking machines, whizzing around — more stimulation than she could keep track of; (3) they begin briskly (as opposed to kindly and humanely) “handling her” - often in intimate ways, while talking to their colleagues about things that are completely unrelated to my Mom and her experience; (4) they storm out of the room as quickly as they stormed in, leaving her once again in bed in a quiet room but with an increased anxiety level and a budding resentment. These providers had obviously not been trained on the experience of or dealing with dementia. My Mom was a lamb and they could turn her into a horse’s behind in 30 seconds. So don’t be afraid to also sit your caregiver down - or observe him or her in action - and then make gentle suggestions for trying some of the things you’ve found that work better with your LO. Usually people (with or without dementia) are operating from good intentions, but when we don’t get the desired result, we start looking for who is to blame. The most transformative thing I have learned is, instead of looking for blame, look at your behavior and try changing something about it and monitor how it affects the result. It’s not an instant magic bullet, but it does give you a much less emotional, and more scientific/rational way to address unruly behavior on the part of both caregivers and care receivers.

Sun-downing is widely accepted as a genuine issue amongst this population and I think what either is or just feels like conscious manipulation is often a part of that and not something the patient can control. Even if she is being purposely manipulative and can control it there is a reason she is doing it (maybe less of a new reason if this has always been part of her personality) and for me ignoring it and simply putting your foot down is least likely to help. At the very minimum the paid caregivers can't and aren't going to force her to allow them to do these things and if they try and aren't successful it's going to be harder.

I know my mom is often more confused, harder to talk to and often snaps at me at night. Mainly because when she hasn't done something like take her meds or take her lantus shot at the same time, get ready for bed and turn off the radio...we have to keep calling her to remind her to do it and like last night for instance that meant 3 or 4 calls (we have a camera above her table and can check to see if she has done these things, it also records clips of activity so we can go back and look). She was watching something on the IPad and didn't like being interrupted and boy did she let me know! This morning as usual she apologized and while she knew what was happening she didn't know why she reacted the way she did or why she wasn't following through during and after the previous phone calls. Her mind isn't as sharp in general and at night it gets far less so, we all know that after 5-6 pm you don't want to ask or expect too much of her. But she is comfortable with my brother and I managing these things, she trusts us, if we were to introduce a hired caregiver to do these things with her (or I should say when) in person I have no doubt she will be uncomfortable and it will take some real adjustment. After her stroke for instance we brought her home to my brothers house, I live 4.5-5 hrs away and she couldn't be left alone. He is single and a pilot so his schedule is different all the time and I lived there too for most of that summer. Her motor skills were good and she didn't need assistance exactly but her speech and thought process' just weren't to the point she could be alone, she couldn't call for help or always recognise it was needed to start with and often needed reminders to take meds, eat so we hired a "companion" to stay with her, the idea being that she would stay with mom when Bro was at work. Mom was resistant and we "tried it out" the first time with me also being in the house while companion got to know her and her routine, I think we did maybe 2 hrs the first day then 4 the next day then 6 and I went shopping we also went to her speech apt all together because the companion was going to take her sometimes but never to anything new or new people. Eventually she was ok with me going home for a bit (didn't last long since her heart surgery got scheduled just as I was ready to go) she still didn't like having to have someone there but once the woman knew the program and mom got to know her she didn't need her crutch (me) all the time anymore.

Maybe if you are there and part of the caregivers "learning or familiarizing curve" removing yourself from the actual care more and more it will help your mom adjust to this new [person and trust them with these personal and important things. It's hard to give up control over your basic care, medications, bathing, dressing to anyone including family, it's got to be even harder giving that to strangers. Try to keep the same caregivers and schedule if possible, talk to her Primary who might have ideas (might include a mild anti anxiety med or supplement) and see if you cam ease her into this. If she can't let people help her at home she may need to be somewhere else & that might be better coming from her doctor. You don't need to & shouldn't give in and let her evenings dominate your time forever but maybe facilitating a bit rather than cold T will help.

If your mother has always, all her life, behaved in a similar manner, when she did not get her way, then it is likely manipulation.

If it is new behavior it may be dementia.

If it is new behavior and she has been diagnosed with dementia, it's likely the dementia.

In my experience with a 92 year old mother who's ALWAYS been VERY manipulative and now has dementia, the manipulative behaviors are now EXACERBATED. In such a situation, it's really hard to sort the Bull from the Crap, isn't it? In any event, your mother needs to accept the help given to her by the caregivers and know that you will NOT be responding to her evening behavior. Since there's nothing wrong with her when she's doing the screaming & being uncooperative, there is no reason for you to rush over there to 'fix' things. Perhaps you can have a phone conversation with her prior to the evening routine, letting her know how much you love her & that you'll be speaking with her again tomorrow, etc.

Best of luck!!

My mom would get violent and start punching dad and I in the evening.  She would use words I didn't even know she knew. lol 
The geriatric doctor prescribed Rispirdone and we started turning lights on around the house before dusk.  Big improvement on the nastiness - she still has Alzheimer's, but is easier to tolerate.

Seroquel...ask your dr to prescribe it for her.

Don't think that any medicine will change your Mom's basic personality. If that's the way she's always gotten what she's wanted, why should she change now? I have found that in the beginning stages of Alzheimer's, personality traits often emerge (and sometimes to the point of embarrassment to the family), and take over. My Mom flirted with any doctor who took care of her and tried to bring me into the foray by asking if I thought the doc was good looking....while he was standing there. I think that with Alzheimer's, a person's barrier/guard? (whatever you want to call it), is gone and they know no limits to what they say. In my experience, this phase will pass tho it may take a while. Mom will become more cooperative as the disease progresses. For now....I advise just not giving in to her demands and hanging tough.

Thank you everyone. Great ideas and options. I have called her but when she is screaming and doesn't want to talk to anyone, she won't talk, just keeps screaming. We even try to the white board and write messages. I really do not like seeing her upset because i'm sure it effects her physically. She seems to get so upset, her lips start quivering, etc. i have to say I have tried all these and as far as the boundaries go of not going over there, her health is important and we have had to deal with so many UTI's that it's unhealthy to not get changed if she has has wet urine or bowel movement on her. I've gotten very stern with her explaining that the caregivers are there to help me help her and she will listen to me and seems to understand, apologizes and then does it again. I may have to make a more permanent change like a nursing home but I hate even the thought of that. She is now on the lowest dosage of seroquel and on mitzapine 30 mg which was raised from 15. She's on a walker and falling is a concern if she gets out of bed with no one there. It seems to be a catch 22. I have lost many caregivers over this and the AL has threatened to evict her lease if the outbursts continue. See sometimes this screaming thing happens down in main social hall where she will not go back to her apt or do anything they ask. They get embarassed which i wish they would not take her behaviours personal but i realize that that issue is with their training and experience. Thank you so much for your input.

I have been following this group for three years
You all have been nothing but total comfort and fabulous information and sharing for me
I have downloaded many of these posts and kept them because they have been comfort and good information
I am a 24/7 caregiver for my brother with Parkinson’s and dementia (as well as a gotta have tha last word narcissistic personality)
and, you can imagine what it’s like to live with a [younger] sibling telling you what to do!! And a ‘girl’ telling the ‘boy’ what to do! Especially from our generation
he has lost most of his livlihood, and ability to do all the stuff he loved to do, and I live daily trying to keep some kind of life happening. This doesn’t work, agreed? You can only do certain stuff before it feels like an alien taking over your life(for him), no matter what your best intentions are.
This is one if the best threads I have read...
thank you all
and strength, peace, and comfort to all....caregiver and the one given care
i guess the most important thing is to know there is love
christine

My mother has dementia and she can be left alone for a few hours at a time. She is able to use her phone to call me when I'm out. She hates for me to be iut. I go to church at night two times a week with friends. She never wants me to go. I wonder if this is manipulation. Sorry if I hijacked this thread. This is my first post.

She may be presenting "showtiming" to get what she wants. This behavior pattern is typical of elders - often akin to a child not wanting to go to bed when they are told to by their parent.

Ativan 1mg

Cheryljane;

You said "...some call it sundowners and some say it's manipulation. In the evening mother begins screaming and being uncooperative with caregivers for eating, meds, changing underwear and putting on pajamas."

There are two questions regarding this: was she demanding/manipulative before and more importantly does any of this behavior occur at other times of the day?

Agreed with another poster that dementia can make previous behaviors more prominent as often the "barriers" that might keep it in check are failing as well, so perhaps this plays into it, IF she had similar tendencies before. However, even if she was somewhat demanding prior to dementia, if this only happens in the evening, especially if there are care-giving duties provided during the day as well, then I would suspect sun-downing (UTIs can contribute as well!)

Our mother lived alone when she started showing signs of dementia (short term memory, difficulty with preparing foods and finances, etc.) There was no one there to battle with, so she did not exhibit that kind of behavior. We had some cameras in place, partly to keep some tabs on her and partly for the short time we had 1 hour aide visits.... she started what I call OCD behavior, at first only a few iterations a few nights, but eventually became a nightly marathon of checking the door lock, sidelights, dishwasher and LR, over and over for up to 1-1.5 hours! I had to turn the sound off my phone as I would get camera alert and email alert every few minutes during that time!!!

Since moving to MC, her first real "sun-down" episode occurred because of a UTI. Several hours of ranting, demanding to get out, had guests coming, had to go home, trying all the doors and everyone's patience! They finally called and asked me to come there - by the time I was able to get there they had gotten her into her room with a magazine, so I did not intervene. But, after telling them I would come up, I also said what is it that I can do? She's not done this before and most likely won't listen to me either!

Unfortunately this happened on a Friday night, no doc available until Monday. During the day she was FINE. Every night she would do this again. Even during the first week of antibiotics she continued to have evening issues. Doc Rxed Lorazepam - as needed only. It does not take time to build up, it works in about 20-30 minutes! At some point the doc took this order away and I had to argue with them to restore it. It is ONLY for when she really needs it (most of the time she is compliant and easily redirected.) Doc's concern was fall risk, but when mom is in this state, she is more likely to get hurt or hurt someone!!! It is now rarely used, but there if we need it. She gets a very minimal dose and only when needed. I prefer not medicating, but given that this is a mild dose, and is only used sporadically, I am okay with it.

Although your mom does "calm down" if you go there, clearly something is amiss if this only happens at night. If she gets care during the day for bathing, dressing, eating, meds, changing undergarments and has no issue, then consider this sun-downing. She may need to try other medications - depending on the type of dementia, some medications should not be used. Consult with doctor regarding this and try other medication - be sure that she takes this at least 1/2 hour before the time these rants generally happen and see how it goes.

Also, is she in just AL or MC/AL? Most AL are equipped to assist with ADLs and medications, but not with dementia (maybe early stages, but not like this!) If she is not in MC, do they have that available in her facility? The staff would be better equipped to deal with this behavior than just regular AL staff. You might want to consider a move to MC if she is not already living in one.

I suggest bribing her to accept that you won't be coming over tonight.

"Your daughter has to travel for business, or for a sick friend, or to the doctor today, so she can't come over. (I have NO PROBLEM with lying. Just construct your lies so that the elder won't see through it. They most often forget completely.) To cheer you up, I am giving you Peach Melba (a favorite dessert) and/or you will watch your favorite movie tonight, IF you cooperate with me (the carer.)"

Use bribes, formally request cooperation, remind her that you've been run down lately, or use any other manipulation that you can think of. Manipulation is a way for her to get the care she desires, craves, and needs. Give her something extra when you are taking away something that she is used to. Keep it up for a month before you decide it won't work.

Blessings upon you and all of us!

If this behavior only happens at night and she is cooperative during the day maybe try shifting her schedule a bit. Have them give her meds and get her ready for bed a bit earlier before she hit's that bewitching hour. Get her back up to her room and settled in her chair or bed (if that works) doing whatever she does on her own in the evening before bed before she tends to start loosing it. It might be worth a shot and at least get her out of the public areas where her outbursts are becoming more problematic.