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OK, 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. I often think that it is by that time she realizes I'm not coming over which is what she really wants, and when I get there she is full of smiles and apologies for any bad behavior or says she didn't do it or didn't mean it. Is there a medicine for this? Thanks.


Cheryl

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.
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DebraCapley Jan 11, 2019
I loved your compassionate response. Thanks so much for sharing your thoughts.
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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.
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ItHappenedToMe Jan 11, 2019
Very good advice. And they need to listen to relatives who know her behavior so they don't think something is dementia if it's part of a person's normal behavior. Also a good idea to keep the meds to a minimum to keep the load on the liver and kidneys as low as possible.
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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!
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jacobsonbob Jan 11, 2019
The unwritten understanding can be that if you behave as if you have dementia, then the "punishment" will be that people will treat you as if you do and not take what you say seriously. Maybe if the OPs mother can be made to understand this, then perhaps she'll change her behavior. It's sort of like the children who are told if they act and have tantrums like babies, the parents will treat them like babies by giving them fewer privileges.
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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.
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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!!
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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.
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Dexieboy Jan 11, 2019
I tend to agree with you. My mom is great in the mornings, but by mid to late afternoons, she often becomes confused or disoriented. By evenings even I feel fatigued, physically, emotionally, and mentally. Everything seems so magnified compared to my mornings when I am fresh.
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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!!
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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.
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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.
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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!
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