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She yells and screams all night, I barely get any sleep. Now she is crying all day and all night. I know she doesn't like to be alone in her room at night. I sit with her every night in hopes that she'll fall asleep and if she does she'll sleep for 3 hours max. Now she's picked up this new habit of crying. By nature when she cry's I console her, then I noticed once she gets what she wants she'll stop and soon as you do something she doesn't like ex: go to the bathroom and leave her, she gets so mad she'll scream JESUSSSSSSSSSSSS HELP ME JESUSSSSSSSSSSSSSSSS to the TOP of her lungs. Her throat is becoming sore from the yelling and crying. I make sure she's comfortable at all time's and she's not in physical pain. Please help! Now she's up saying it's her birthday and we all hate her😣😣😣. Is this just the way things will be or is this just a phase?

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Chantell, Seroquel ( the non brand name is quetiapine) is an atypical antipsychotic that works for SOME people with the symptoms you describe. It also has what are known as " black box" warnings saying "may cause death" and" should not be used for older people with dementia". But for SOME older people with dementia, this drug is life altering in a good way!

I think the good news is that you are with grandma all the time and if she didn't react well to this med, you wouldn't give it to her again. You would be able to judge if it was giving her back the ability to get some sleep and be at peace within herself. How frightened she must be by her delusions and hallucinations to be calling for Jesus.

Chantelle, you are a good granddaughter and want the best for GMA. But you have a lot on your plate with 4 little kids and a divorce. I think perhaps you need to take a chance on some new medication, whether the one currently prescribed or something else from the pediatrician. Good luck!
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SuzeeQ- thank you! I go down a list every night making sure she's clean, comfortable, Dry, fed and I give pain relievers. No matter what she'll holler my name all day and night and at night she will yell help me I'm falling down while she's in bed. This crying thing she has started doing I hope is a phase. One minute she'll cry and the next she's fine. She's asleep now I guess I should try to shut my eyes and pray she'll sleep for a few hours.
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Right now she's seeing a neurologist in addition to her primary care Dr. He was referred to by her primary care Dr actually, so I figured maybe I should seek one on my own as well as a geriatrician (which I found, she has an appointment on Wednesday) The neurologist suggested the med ( I can't remember the name) but he said that from his understanding it would make her agitated and she would fell almost as if she had a slight hangover were his words exactly. That particular drug was to help with sundowning because she suffers from that. She's up by 1am if she goes to bed at all. I actually even filled the prescription and the side affect said " May cause death" which really freaked me out. I've never heard of that medication you said but I'll be sure to mention it. I don't know much about the medications but the doctor didn't have much confidence in it, he said it's a hit or miss. I just want to give her something safe. 
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I've seen this before. In the rehab facility where my mother stayed, there was a woman who behaved exactly as you've described above. It was very disturbing. I felt awful for the woman, and awful leaving my mom there in that environment as it was so hard to listen to. The staff at the facility said she was fine, and that she did it all day and all night, but that she wasn't in pain. I don't know how they knew that!! I would be very concerned too. I hope you can get to the bottom of it. Good luck.
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Chantell, you sound like a wonderful granddaughter. Hope you can find some good solutions for her and also you (adequate sleep for you as a caregiver, for instance). Take good care.
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Chantell, did the doctor say this med WOULD make her agitated in the AM or MIGHT make her agitated?

Has anyone mentioned trying Seroquel? What kind of doctor is treating grandma? And what is the new medication? There maybe someone here who has experience with it.
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To everyone else, I'm not denying my grandmother medication she's on medication. The doctor suggested a new medication that was very new that he isn't familiar with. I decided to get a second opinion sense the Dr wasn't to familiar. I have made sure there aren't any physical needs that may be hurting her. Emotionally I'm sure she bothered because she knows somethings isn't right. I'm not opposed to medication I want her to be comfortable and calm. But I don't want her to be so sedated to the point she can't even open her eyes. My grandmother is my entire world and I'm doing all this alone. I thought this was a safe place but it's clearly not! Thank you for advice but I'll just stick to praying and doing what I can until I can't anymore. Thanks again
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Jeanne Gibbs-
No I didn't give her the drug because I don't want her heavily sedated just to keep her quiet. I first made sure she didn't have any other underlying issues, because anyone with any sense would think crying or screaming equals pain or discomfort whether it's physical or emotional. Maybe you miss read my post. I said she has picked up a new habit of crying about things for example (today is my birthday and everyone forgot) or my glasses are foggy. She is on medication for anxiety, the doctor recommended something else to help her sleep because she is up all night long calling my name or names of people who I don't even know, if Im using the bathroom and can't come immediately she yells help me I'm falling but as soon as long as I sit with her she's ok. I sit with her majority of the day but I have children I cannot sit with her 24/7. The Dr made it clear this new drug can be a hit or miss , but also told me that the side affects are that she will be extremely disoriented and agitated in the morning but at least you'll get sleep. He also stated that the drug is new and that she actually was the first patient he's ever tried it on. I believe in second opinions when your not sure. Why on God's green earth would you think I would sit back and let my grandmother suffer?! I have 4 kids which one by the way is 15 months so sleep is very important to me, so if I didn't care I'd give her anything and let her deal with the side affects. I wouldn't want someone to do me that way and I treat people the way I'd like to be treated. I'm sorry I'm not one to just treat my grandmother as a test dummy to satisfy my own needs. I want her to have something safe. And if the Dr isn't sure why the hell should I be? I asked for advice I didn't ask to be jumped on. I'd appreciate it if you don't respond to my post anymore because to tell someone who's reaching for help your frustrated with them is very rude. Good day!
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My grandma does this. She does this when she's upset or has to go to the bathroom or just can't sleep. She gets into this repeative cycle where she yells, "Help me. Help me Oh Lord help me." She will continue and doesn't cry it out as suggested to me by someone. I instead take a different route which often helps. When she has trouble sleeping, she cries which makes it so I cannot sleep anyway. I will wait a few then go in and say, "oh you must have woken up. Let me help you to the bathroom." Then I take her to the bathroom meanwhile talking to her about how tired she looks, and I heat up her blankets in the dryer as well as heat up a heating pad for her back to make sure she's nice and warm and comfortable. If she seems to have any kind of pain (sometimes she has a bad finger and it seems to hurt her or sometimes when she's close to due to her neck shot for pain relief, I'll offer her to Tylenol) then tuck her back in. I repeat the getting ready for bed routine. She'll go to the bathroom, then I tuck the warm blankets around her in her chair and make sure she's laying against the warm heating pad. Often times just the walking and the talking is enough of a distraction to stop the yelling process.

Try to distract her. Try to re-tuck her back in. Often times I find she says help me just because she has to go to the bathroom and cannot express herself to say so. She panicks and starts yelling. Don't give up hope. If it is a phase, then it will pass. I have found keeping her active with pacing, folding blankets, looking at albums and keeping her mind as busy as possible during the day, will help her fall asleep naturally. I keep my grandma's naps down to a 20 minute nap in the morning mostly around her lunch time then keep her busy the rest of the morning. That helps her to be naturally tired and she is great about taking cues for bed. I sit and watch tv while relaxing at night until she falls asleep naturally, then I move into my room watching her via baby monitor. That way I can see and hear her as needed. If I hear the cycle start I'll watch. If I see her moving around then I know it's a bathroom break and walk that's needed. If she's doing it in her sleep then I let her cycle through it and usually within seconds it stops. It's not easy but it's how I handle it.
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This happened to a friend of mine,, her FIL yelled and cried for his son all night long. My friend, her hubs ( the son) and all their adult children took turns sitting with him at night. Did not help a bit, but someone was with him. It about killed them all. Time to get some help,, they had 7 people to do this...
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Chantell, I sincerely hope that you are reading these responses and will consider what we're telling you: that mental aguish is horrible and if it can be alleviated with meds, it needs to be.

 Some folks seem to think that if you just comfort a dementia patient enough, or give them some distraction, all will be well. For a while, my brother insisted that all of moms mental anguish was " what she was doing to herself" and that she was induging in a " pity party". My mother would dutifully recite these idiocies and then go back to wringing her hands and weeping. What we didnt get at that time was that moms brain was irretrievably broken and that no matter how much reassurance and comfort and logic we presented, some piece of wiring that had previously allowed her to be relatively calm and worry free had shorted out.

What finally worked was a combo of two antidepressants and a small dose of antianxiety meds. She was  not doped up, but frankly, I wouldn't have cared if she was .

She was calm most of the time. As her dementia progressed, she had some delusions about having a communicable disease and about having not paid her taxes. Her meds were adjusted and she became calm again.

I hope you can find your loved one some good relief through medication.
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When I was in ICU someone would come in about ever hour and show me the smiley face chart and asked me to rate my pain level. At one point I asked when they were going to bring in the chart for me to rate my anguish. I wasn't in physical pain but OMG I was miserable -- hallucinations, delusions, and despair. They knew what was wrong and it would just take a few days to fix it. I cried one entire afternoon. Mental and emotional pain is brutal.
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I agree about treating her mental and/or emotional pain. I'd read a lot about dementia and how the brain is not working properly. If she is suffering, she's suffering.....I'm not sure how having her alert, but, in mental and emotional pain is helpful. I'd consider following the doctor's orders. Also, there are medications that could help, that do not have negative side effects. Medications provided very helpful for my LO and she went from being distraught and crying to pretty content, without being sedated.
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Jeanne, thanks for correcting my reading of the OP's response.

Chantelle, can you care for your loved one under these conditions for another 4 or 5 years? If she's in great shape physically, she could live for a long time. Consider the meds, please.
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Chantell, maybe try giving her a "baby" doll, or a stuffed puppy or kitty. Sometimes, having their own baby or pet is calming to them and brings them comfort, and or a purpose from boredom.
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"They did suggest trying a new medication however but they also said its a fairly new drug. I don't want her sedated and drugged just to keep her quiet."

Chantell, I took this to mean you aren't giving her the drug. If that is not a correct interpretation, don't read the rest of this message.

And you haven't let her try this new drug? Because you are afraid it MIGHT make her too sedated? What if you tried it and the side effects were too severe and so, with the doctor's advice you discontinue it, and Mom goes back to being miserable? Or you tried it and after a couple of weeks it worked and Mom was much more herself and comfortable?

This may sound harsh but I get frustrated with posts like this. Your loved one is miserable. You consult a doctor. Doctor suggests trying a new drug. You say No. You take her home where she gets even more miserable. What is wrong with this picture?

What were you hoping for from a doctor? A magic wand that comes with a guarantee? No effort to monitor it and make adjustments? That is not how medicine works and it sure as heck isn't the way it works with dementia! When people say, "Have Mom evaluated by a doctor," they don't say "and take any advice from the doctor very seriously" because that should be understood. No one should have to say it.

Barb, of course keeping your mom as pain-free as possible did not make you a bad person! Chantell, is that what you are worried about? That someone would perceive you as a bad person if you try a drug suggested by her doctor? Just focus on what is good for your mother. Don't worry about your reputation!

If I ever become constantly emotionally and psychically miserable and there is a chance a new drug would help, give me the drug! Monitor me, see if it is helping or adjustments are needed, but try anything that has a chance of helping! I would prefer being sedated and visiting in lala land than be in the present moment with severe pain.

Just my opinion, of course, but I sure hold it strongly!
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Chantell, when an elder is up crying all night so that the caregiver can't sleep, she's not in very good shape.

What med is she on? When you say it's fairly new, do you mean she just started taking it? Did they tell you how long before they can evaluate if it's working?

I always told my mom's docs ( after she was diagnosed with dementia) that I didn't really care a about the sedating effects of drugs they gave her, as long as she wasn't in psychic or physical pain.

Maybe that makes me a bad person, but the only thing that I ever promised my mom was "no pain".
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She's been checked for uti, and several other things. They wanted to keep her on her same plan we have her on. She's actually in very good shape! I'm just wondering about to need to cry now every hour. We can talk and watch tv then boom out the blue it's the saddest day of her life. They did suggest trying a new medication however but they also said its a fairly new drug. I don't want her sedated and drugged just to keep her quiet. I feel like maybe she knows something isn't right and it's frustrating maybe?! 🤷🏽‍♀️ What kind of meds are you guys love ones taking to help with sun downing
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I worked in hospice for many years and many of the patients would yell, "Help me!" over and over all night. I did everything in my power to make sure they were comfortable, warm, and pain-free. I would turn them, talk softly to them to comfort them, hold their hands and just when I'd think they were okay they would yell out, "Help me!" again. I wish I knew why. I still wonder about it.
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Yes, what did her doctor say about this behavior? I would imagine they would have some idea of what is going on after they do tests to rule out infections and causes for physical pain. Did they find anything?

If there is no other explanation, I'd explore if this due to the dementia? I know of a lady who called out Help! I'm dying, a lot. The doctors could find no explanation ,but, said that her particular type of condition that caused her dementia was causing it. I don't know of they were able to treat he with medication to help or not, but, not sleeping is not good for her or you. I'd speak with the doctors pronto. There is no substitute for medical attention when someone is in pain, imo.
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Ask about medication to help her, my mom was given mirtazapine to help her sleep at night (which also helped her be more herself during the day) although your doc may recommend something different. Screaming, moaning, repeating the same phrase over and over etc are fairly common tics in dementia, my mom's phrase is "turn me over" which almost never means that (and used to drive me batty).
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Chantell, have you talked to her doctor about this behavior, as several posters advised the last time you asked this question?

How do you know she's not in pain? It sure sounds to me like she's in pain.

At the very least, she needs to be checked for a UTI.
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