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Is this just for some or most stay up most nights. Whats with that is it just that they can't or don't want to sleep???

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Its called 'sundowning'. Many people with Alzheimer's and/or dementia get it in the evening into the night, sometimes at the same times every day. They get restless and piddle around the house, and are wide awake, and active. My dad was like that in the evening, but once he went to bed about 8pm, he slept all night. My mother in law has Alzheimers now, and has it every day usually towards evening and during the night. They have to give her pills to relax her, as she has a hard time sleeping too, and gets pretty fidgety. Its part of the disease, and its hard for the family that cares for them. Once they can't walk anymore, it ends, but they can still be restless.
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I agree, Margaret.... It took 2 of us, mom and me, to watch out and care for my grandma, who had ALZ, and she wore us out. I was pt time companion to another lady with ALZ, and while we had fun, nowadays you can't even talk to her - it makes no sense to her. Demonic, I've always thought.... who do you think they're talking to, those that do that? And why are some so afraid? My mom has had lady client with ALZ threaten to push her out a high window; mom locked herself in a bedroom, called the agency, and got out of there when a replacement came.
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People who have dementia are mentally ill. They are dangerous to themselves and others in a myriad of ways that you can’t even imagine. I’ve been a caregiver to my elderly demented mother for awhile and it’s like living in hell
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My husband was up all night again last night, I can't figure out what causes it. He does not sleep during the day, in fact after being up all night he is more awake the next day. He is 75 years old , he was diagnosed with dementia in 2009 we have never been told that he has Lewy body dementia but I am sure he does. a year or so ago he was up almost every night. but now not so often.
It has been almost 3 weeks since he did it last. and he was sure someone was coming to pic him up to go somewhere last night. and for the last 3 days he has had a real problem getting around he walks with a walker but the last 3 days I have had him in a wheel chair. well when he is up all night he can walk fine without the walker. He also is pretty much blind from macular
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You;re right about trazedone.I makes my moms anxiety worse. She is fearful she won't be ready on time in the morning!!!. So y 93 year mother with sime form of dementa goes straight to her room a fter dinner in assisted living. Byt 7:30 at nigh she is in bed and sound asleep. She wakes up every nightt 2;30 in the morning, takes a shower and gets dressed, " so she;ll be ready when the med techs come with plls at 7 AM".. Yet after dressiing, fixing her hair and applying lipstick she heads to the living room and sleeps on the couch unitl the med techs come i the door and shock her whn the wake her for the pills. . Will try .25 mg of valium.. Her anzxiety iseems to increase daily
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my mother is 93 will be 94 in may. she is getting worst especially at night. she refuses to go to bed because she thinks the peoplewho live here will come home and call the police. she lives in my home with my son and husband. she often wants to go home to her house in another town a house she sold almost 15 yrs ago. I brought her furniture here and got rid of mine thinking that having her things around her would make it easier but now she argues they are not her things. I retired last year to stay with her full time but she tries to leave the house with her walker, fell and broke her leg last year while visiting my brother and ended staying in w va for a year 3 mos in a rehab center and doesn't remember any of it. I tried a sleep aid at night and she still gets up a lot during the night. making an apt with the dr. to see what else may help her settle at night.
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I lived alone (except for my faithful dog) until I brought my mother to live with me. Made her a little suite with a bedroom, living room and bathroom with a private door to it. She sleeps most of the day, rising between 2 and 5. (which may be a blessing because I work during the day, so she is alone. I lock the dog in the basement, so she is there when I get home) From then on she is up and down the stairlift 20-40 times a day. Constantly getting food, eating a tiny bit, throwing it away and getting new food. Often up all night again going up and down the stairlift and making noise, banging on my locked bedroom door asking "Are you in there sleeping?" Talks to herself a lot. Sometime after particularly grueling nights I just get so agitated because I can't get a night's sleep. I know she doesn't know what's going on, and I shouldn't get mad, but she just drives me nuts, sometimes. So I feel like I'm not doing a good job because I get irritated. She never knows what day, week, date, month, or year it is. But EVERY day, she says she is going back to Hawaii tomorrow at 2.
I know time is an issue with dementia. It's hard to understand what that really means to them. She absolutely REFUSES to go to her doctors appointments I make well in advance. Perhaps I should tell her we're going to the airport. Sadly, it seems like telling lies seems to be one of the few ways to help her.
Overall, I guess for me, it just seems like I'm not the best person for caring for her. I never had children, so I'm guessing this is like that. But there really is no one else to do it. So you do what you have to do.
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Experiencing the same over here with my 88yr old mother-in-law. I had my mother and mother-in-law living with my husband and I. It worked out good for them both cause they were company for each other. My mom had kidney disease and past last Aug 2014, I think that scared my mother-in-law, no we sold our home, and sent her to visit with her daughter in Las Vegas. When she returned her dementia progressed to staying up all day and night. Wandering, talking to herself, telling us about people she sees. We're exhausted
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Scissors, Almost same position as me. Husband, 66 yrs. old, has Lewy Body Dementia. Sees other people and talks to them. Sleeps days, walks nights and rips things apart at night. Walks around at night like a drunk. Gets dressed and redressed during night. I have controlled epilepsy with a VNS, it's a stimulator, like a pacemaker to the brain. Before he cared for me, now I care for him. Worry if I get sick and he needs my care. I have a wonderful neighbor who helps everyday. Other neighbors are good with us and willing to help. Family are not there. He does see a neurologist and is on some medication. Any advice.
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I wanted to respond to Scizzors, my name is Shirley
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I kept a journal...it was like my sanity check. I would write in my journal when ever mom would display some odd behavior. I wanted to have things down on paper so I could reflect on her progression. My siblings loved it..because now I can read inserts of my journal that gives them a little perspective on what dementia was doing to our sweet mom.
One week in October when mom was "showtiming" because my older sister was visiting, she started getting mad and I, of course, was the punching bag. She looks straight at me and says..."And don't write that down!" Then all three of us started to laugh.
I am so glad I kept my journal. I started it on my birthday Oct 15. October is when mom's dementia took a big turn downhill. So I guess you could say...my book has been written. :)
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msdaisy I agree with wuvicecream, you should write a book
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Hello all!
Newbie here. My Mom seems to have "sun-upping" She will pace through the house during the day getting into everything. One day she laid down t and took a 4 hour nap which I didn't stop due to wanting a needed break. MISTAKE. She was up throughout the night pacing, going into drawers, etc. Now I make sure she stays awake and no naps. Is it exhausting? Yep! However, she will go to bed around 6 pm at night and wakes up at 5 in the morning. The moment she gets up the pacing, talking to dead relatives and other "friends" begins. The doctor gave me Ativan to give to her. During the day there is no change whether she is on Ativan or not, so I stopped giving it to her until about an hour or so before I know she will be going to bed. I can see her calming down and she sleeps very soundly. Note: Ativan works differently with everybody. Some people it can cause more agitation.
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Thank you for saying that...If there was anything that I did with my mom that would comfort or help anyone who is experiencing this dreaded disease it makes it all worth it. I feel myself drawn to this site. Reading and responding even though my journey with mom is over...it's very therapeutic to share my testimony. It validates what I experienced and who I am. Thank you for your friendship and sharing your story with me. ((hugs))
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msdaizy I must say your Mom has given you a gift, through your experience in caring for her. It is clear you have a generosity of sharing your painful but rewarding emotions with others in their time of need. You have a way of expressing the right words and a kindness that gives someone who is struggling a feeling of hope. You are a special person and your Mom has left her little Energizer Bunny Spirit with you.
I always think to myself if I can use what I know to help or inspire other people than Mom has not gone through this senselessly.
I just needed to say this .......
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I know where you are...I was there not long ago. I almost gave up on mom. I was exhausted, no sleep, up and down all night long. At my wits end. I couldn't even fathom how at the age of 91 she could keep going. My little energizer bunny. She had 2 arthritic knees, macular degeneration, and the dementia was taking her from me. She was the body of my mother..only an imposter. Someone I did not recognize anymore. Sundowning, the exaggeration stories, the falls, the outbursts and the brutal words that pierced my soul. I missed that sweet soul of a person who would never do or say the things this imposter would say.
I thought of how I would spend the money she had in her bank account paying privately for nursing home then applying for medicaid for her. But after much thought and prayers... I knew I couldn't do that. The mom I knew would never be this way...it was the disease. So I learned to separate the anguish and hurt and do what I could to show much love and care to her. As much as I could. She started to feel comforted by me. As much as I resented her at times...I would make it a point to give her a kiss every night and tell her I loved her.
I understand how hard it is...do what you have to do for you. If you can't keep it up...you know that you gave it your all. There comes a time when you need to start thinking of yourself. I will pray for you all...My dear mom took her last breath on Jan 9th. I love and miss her so...but she is finally at peace. God Bless you all.
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I given her 10 years of My Life shall I give her more?
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It's amazing how you read these comments and you could've written them all! My 93 1/2 mom has a bit of everything described here. She has Alzheimer's, but she's also legally blind and her feet won't allow her to stand alone. These complications are actually a blessing, since they don't allow her to wander. My blessings to all of you, who return the care she gave you when your life started...
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Leisa1 The only diagnoses for the LBD came from me. I know the doctors cannot clinically diagnose it without a brain autopsy, but after studying all about Lewy Body and knowing mom's symptoms I came to that conclusion. Mom was a totally different personality. She changed from a sweet, caring, meek person to someone very much opposite. I love my mom so very much and after finally figuring out what was going on...I was able to separate my own frustration over the disease and truly care for her. As difficult as it was, she had no control over what was happening to her...so I learned to adjust and move on. Goodluck with you and your mom. God bless.
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I have always thought LBD but the doctors really don't do tests and I guess they can't know until she dies. She has had Parkinsons since 2005 and they say it is related to that. I admire you for taking care of your mom,it is so hard with all the delusions constantly. Thank you for sharing your story with me.
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Leisa1...I can't really say. Dementia and the types are all different. But with my mom her last 2 weeks she refused anything I put in front of her. And when I had to give her medications with water she struggled to swallow and sometimes would gag or feel as if she was going to throw up. My mom had Lewy Body Dementia. She was up a lot when she lived her own I remember coming over during the day and she would be sleeping. Lewy Body dementia affects the chemicals in the brain (serotonin, being one of those chemicals). But every person is different and that stage could last up to a year. When mom fell in July and the doctors recommended either nursing home or my home, she was no longer able to live on her own safely. I wasn't going to send her off to a nursing home so we moved her in with us. When mom came home with me, I found out she didn't sleep at night. Prescription sleepaides did not work with mom. I was up and down all night long trying to get her to stay in her bed. Falling is a big symptom of the Lewy Body she fell a total of 6 times at my home. It affected her balance and walk. She leaned severely to one side near the end. In the last stages they lose their abilities to walk, talk, and eat or drink. Mom did that 2 weeks before she passed away. Because of mom DNR we could only make her comfortable. She had a respite week in the Hospice house that we scheduled one month ago. She arrived on Friday Jan 4 and passed away on Jan 9th, the day she was to return home. I am so grateful that we had that week at the Hospice house. They gave her the best care and kept her comfortable. I stayed by my moms side until the very end. As painful and frustrating this disease was...my mom was finally at peace.
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@msdaisy My mom is on Seroquel. She has not wanted to eat as much and has lost 7 pounds in a month. She doesn't choke but is this because she could be in the last stages of this disease?
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To sunflo2,
Gosh your mom shouldn't be left alone with her Dementia she might fall and get seriously hurt.
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My mom is up all night to. She constantly wanders the house, checking windows, doors, looking out the windows, etc. When I would stay there, she would come into the room (or bang on the door) to "see if I was still there". She is afraid others are watching her at night (part of the paranoia associated with dementia and ALZ). SHe would have conversations with herself (she does this day and night now) When I visit, I stay at hotel. My thoughts are that she sleeps all day or most of the day and then is up all night because nights are more frightening. I think she finally settles down about 4-5 am and then passes out from exhaustion not waking until late in the day and napping in the afternoon.

She has dementia. Dr. gave her sleep aid, but this doesn't always work for her and she lives alone, so I think she is afraid she'll get dopey and will fall. SHe fell out of bed and hit the nightstand and cut herself requiring 18 stitches (she lives alone) once when she was taking the sleep aids in addition to some other pain medication.
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Yes scizzors sound all too familiar. Mom was not the same after she moved in to my home with me also. The dementia that you are discribing is one of the hardest types of dementia to diagnose. It sometimes gets misdiagnosed because the only way they can diagnose it is through autopsy. But I did my own research and decided to try taking mom off of all medications because with Lewy body dementia it will give adverse reactions to ambiem, halyperidol, and trazadone. The only medication that helped mom was the lorazepam. So at night I would give her only .5 mg of lorazepam and an over the counter advil pm. That worked the best. The trazadone will cause dreams I know this because my husband takes it. But with a 91 year old woman it was frightening. The delusions were what kept her up because I had a monitor on in her room with a camera and I would sit and watch her swing, kick and sometimes talk to them. It does rob them of their natural self, making them someone unrecognizable. So sad. But study and accepted who they are and try and work around it. It was easier not to argue about things with mom it made her more agitated. I would only agree or say I don't know? Sometimes even lying a little will ease their mind. I'm sorry..I know exactly how you feel..it was only a month ago I was dealing with the same. God Bless you.
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To Scizzors. Yes my mother is the same. Scroll up to the top and read I am lightedpumken my mother is the same but worse. Good god help us all!
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My mother got Valley fever the worst case of it went into menginitis and now its memory loss they said it triggered like dementia. My mothers memory was perfect better than even mine. She thinks it's because shes old. I told her. Then I have to keep telling her no it's not that and explain why then she gets all happy thinking she still has a chance cause shes not all old. I feel so sorry for her. My mom I wish I could give you my life and I take yours because I know how much life means to you! I love you mom always forever through all eternity....
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My husband, 86, has dementia, do not know what kind. He sees "other people". I am his only caregiver as we have no family around here but wonderful neighbors. He will go to bed at 10:00P.M. and I will be in the bathroom at 11:30P.M. and he will be up dressing himself because he thinks it is morning. He has forgotten it is nighttime. I looked after his Mom with dementia for 10 years but then it was the two of us looking after her. I get so frightened what would happen if I get sick. Sometimes I just want to run away. This was not the great guy I was(is) married to. If we travel all he wants to do is come home so gave up on that. We do not socialize as he cannot carry on a conversation and he says weird things. Anyone else in my position.
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Yes Leisa1 delusions haunt them especially at night. Do you have your mom on any types of medication? Because when I was trying to get sleep at night they put mom on trazedone and ambiem but those didn't work for mom she was still trying to get up only like she was drunk. Its the worst disease I have ever experienced. My mom was never ever like the person she became with dementia. But I learned to except her behavior knowing it was the dementia. Sometime disconnecting and making your relationship more of a caregiver is better for you emotionally. Because like I said the dementia changes their whole personality and mental being. And being prepared for whats to come is beneficial to you. Mom stopped eating and drinking on New Years day, because her brain just shut down. She could not swallow with out gagging. She could hardly speak any audible words. My sisters and I stayed at her bedside for 3 days watching her waste away, the most horrible experience. But I'm glad I didn't give up on her and she is a much better place now at peace. God Bless you for doing this for your mom.
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@msdaisy I have my mom with me and what you wrote hit it right on the mark with me. She has Parkinsons and is wasting away. I think it is hardest to see them go away in their mind to another world that is sometimes disturbing to say the least. Just to be a part of it daily is taking its' toll on me. My mom sleeps during the day sometimes and is up at night. Most of the time she wanders the house or stands at the island in the kitchen. She can't relax in her bedroom or the family room because of all the "people" in there.
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