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I am tired of the term 'sundowners' and suggestions of lighting and scheduling. Habits are developed by learning, or appeal. They must find something appealing about staying up all night, in the early stages of dementia. What are the fears then of the daytime hours? My mother knows who the family is and the difference between night and day, although "I had no idea it was so late!" is a common statement. Yet she continues to sleep from dawn until dusk, after piddling around the kitchen. We have gone on trips, and managed to "reschedule" her routine fairly easily, for that period. She will go to bed at a reasonable hour and wake up with the rest of us. Upon coming home, however it isn't long before she reverts back to staying up all night. There has to be something other than a screwed up internal clock, or confusing night and day. Certainly someone can postulate as to "why" and not just tell this is part and parcel of dementia/Alzheimers, and leave it at that.

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My mum hasnt done this yet but she takes a sleeping pill every night although she is getting up to pee alot more?
Mum goes to bed at midnight and gets up at noon which is causing huge problems for her diabetes as shes fasting too much and her mood swings are getting worse.
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My grandma has alzheimers I moved in with her to care for her fulltime. I have the same issue, she is nocturnal and sometimes can go 48-72 hours without any sleep. She believes she is going on holiday with the queen she packs all of her clothes and just waits at the window. I manage to get her in bed but within an hour shes back up and dressed :( it is worse of a nightime but recently its happening through the day also. She is on the highest dose of amitripyline but she seems immune almost now. Its very hard and draining and the doctor always states it is part and parcel of the disease. Infact as I speak she is packing more bags and having a full blown conversation with herself. Patience is the key but we're only human and naturally find it tiresome and challenging at times. Horrid disease x
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To RCW6532: I beg to differ, but it is part of dementia, their timing of day and night can be confused due to changes in their chemical makeup. I am not an expert but my mother has tried to get my dad to go to bed at a normal time, which he does, but to only get up about 1/2 hour later and start wandering around (sundowning), if she gets up to address the issue, he gets mad/upset and its not worth her to fight with him. so it does have some things to do with dementia. if they don't do it in a nursing home, thats because they probably sedate them.
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It is not part of having dementia. Not at all. I think you are the one that has to set her hours. If you allow her to stay up all night and sleep all day then that will be the way it is it seems. If that is not convenient for you and your family then you have to just get her up early and stick to it and she will adjust to those hours. Possibly a trip to the doctor can help with some meds to help her sleep in the beginning. And "sundowning" has nothing to do with sleeping habits.
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I worked nights and appreciated the quietness of stores, no one there, enjoyed the quietness of my days, but taking care of someone on top of that that also stayed up at night, oh no way...my only experience was when my 87 year old was jacked up on breathing treatments, thank God she pretend reads in bed, no wandering yet...
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Very good point, Eddie. Less distraction at night is something to look at. But, for those who wander off, hide things, & for those w/ sun downing symptoms, I'd say it's is definitely NOT a good time to be unsupervised. If the care-giver has to stay up at night, how is he/she supposed to take care of this person all day & all night AND go to work on time AND care for his/her kids, take all to drs. appts., etc....etc...?:
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I am also a nightowl. I always have been. I function much better at night for some reason. I find I can barely function at all during the day anymore but am ready to roll during the dusk to dawn phase. Maybe a large part of it is that is when I finally have things settled down around the house and Mama is able to sleep, but that is when I am wide awake....I guess everyone is just different.
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I'm 54, "sane," and function better at night; when most of the Bronx is asleep. Without those worldly distractions, I actually enjoy reading, watching Lifetime movies, raiding the fridge whenever I want to. Don't have to answer to anyone if I feel like strolling down to the nearest pub at midnight. My ex used to nag about why I can't go to bed like a "normal" person. ... She had to go.

Instead of trying to figure out what's "wrong" with someone else, let's put ourselves in his/her shoes; and take it from there.
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I think pamstegman and gerojohnson have the correct answers. I do think part of it is fear as well. When we are sick even with flu we may feel better during the day but come evening and night we seem to feel worse, it is because everyone is asleep and God forbid anything happen, no one is awake to know. Now that I have developed severe panic and anxiety, I have noticed some of the same exact things like getting nervous come evening that Mom was suffering with...sundowners. I get nervous, I want to go to sleep but there are so many things that seem to need to be done first or things I need to tell others, maybe in case I die or have some "attack" during the night? I don't know for sure but I have found out what it is like from the "other side."
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I have found a similar pattern with my mom, but if woken too early she is extremely surly and just wants to go back to bed. Other times I think it's just easier for her to lay there.
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We wake our 87 year old every day, as on her own she would never get out of bed, the latest test to date was one pm (when we just couldn't figure that through the noise she stayed in bed. One day I banged the pans in the kitchen and she said to me from the B-room, I know your calling me...
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I'm always amazed at what Mom reads and enjoys. The "Smithsonian Magazine" goes over better than "People", for her, and she avidly reads the newspaper, i.e. the same article over and over and over... "Chicken Soup for the Soul" went over well, too, as they are quite short. Plot? she doesn't remember the last paragraph. But she still appreciates good writing.

I'm not sure that eating at night is rewarding her at this point in her decline, as there is zero memory of anything, thus little chance for developing a new habit. She just responds to hunger pangs or as something to do, I imagine.
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Keep in mind that feeding someone at night keeps giving them reward for staying up at night. The kitchen should be "closed" after bedtime. Have a water bottle in the bedroom that will not spill. Also, it might be worthwhile to pay for a nighttime aide, who will respond to mom. Use a baby monitor(instead of the bell), with the aide on the receiving end and both you and your husband can sleep. Also, don't let mom sleep in too late, just wake her gently, a light, 10 later remove the covers. She will be hungry and more willing to get up and get going, and tired earlier. Keep little snacks coming during the day, and give her "chores". Some books, like the "Cat Who...." books (lillian Braun I think) are simple but interesting plots with the same characters in each book. Also, my dad has started to enjoy People (short articles with pictures) along with his Time, Forbes etc. It doesn't matter if he remembers. Mom was a avid reader all her life, but couldn't remember the facts of the book she was reading toward the end. She still enjoyed reading it.
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When my mom was in danger of turning on the stove unattended, we started turning off the breaker in the circuit box, just for the stove. We left the oven light on to remind us when it was turned off at the breaker box. Worked pretty well. Does your mom put up a fuss about the child gate?
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my mom has Alzheimer's and her sleep is so confusing, some days she is up all day and pacing and refuses to go to bed. Then there are days when she does sleep, but due to her turning the stove on at night to cook for the dog and she wandered once, we now have a child gate on her door to keep us all safe at night so the rest of the house can get some sleep. There is a commode in her room, a drink and a snack. The doctor did offer a script, but not only the doctor but the druggist stated that it would make her more confused then she already is.
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I am not a professional, but I think it is an illusion thing...
WHY because if they are up all night and we aren't, they can fool themselves into thinking they do not have the forgetfulness that is so apparent when they are awake during the day, there are no rules at night...our 87 year old did not like being alone, she did it for such a short time.
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I certainly understand the issue with getting him to walk in that case! Luckily, my mother is in great shape physically, though walking still takes forever because she has to stop and pick up every dead leaf she sees. Definitely works on my patience. If it were a toddler, we'd pick them up & carry them; that will definitely not work here.
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I also forgot to mention that if the person with the staying up/roaming issues doesn't walk well, you would not want to give them something to help them sleep (did that before, doctor made it too strong and we ended up one night at 1 am with my husband helping my father off the floor) and we surly couldn't take them for a walk, it would take forever with the shuffling of the feet only moving about 1 inch at a time. I think there are reasons for why things like this happen, maybe to test our patience or to give us the opportunity to learn patience. (but that dont work well with my mother, she loses it too often). good luck to all of us who deal with these issues.
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I'd like to know how you control the "24-hour lighting scheme", practically speaking. The only thing that we've found helps is taking Mom for walks. The more restless she is at night, the longer a walk I try in the day., Waking her from her daytime sleep makes for a mean, grumpy person (as they say, let sleeping dogs lie). Getting up and feeding her a little when she gets up in the night seems to help, also keeping hidden the things she fools with (ie the electric kettle). She doesn't drink much caffeine. Sleeping pills have the OPPOSITE effect, and make her speedier! Definitely exhausting. Mom has Alzheimers & vascular dementia, and is pretty far down the line.
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okay.after reading gerojohnson it was confusing, we need more "down to earth terminology".....but I can tell you that my father, 91, is doing the same thing. He might have a good day where he is up most of the day, goes to bed around 11 or 12, but as soon as my mother thinks she is getting some sleep, he is up roaming around. she comes out later to find all the kitchen cabinet doors open, all the lights on, he has even opened front door/looked out and so far has closed the door. then the next day he is sleeping pretty much all day even though he says he is "just resting his eyes" and hasn't slept good in weeks. But if my mother tries to wake him up, he gets to swinging his arms around and is "ticked" off, so she doesn't bother. We have an appt in July but I think it will be bad news for him cause my mother can't handle this much more and he will be going into a home. It would be better for both of them, she can get her rest and maybe they can get him into a better schedule and maybe he will have other people to talk to (he enjoys talking).
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GayleinJaxFL, oh memories! I bought 100 towels and brought them to adult daycare when Mom was there. She folded them, thought it was her job, and felt so good! They threw them in the dryer and gave them back to her, she never remembered already doing it. That was 4 years ago, she can no longer fold or go to daycare but you are right. I had her put away silverware, sort socks, etc at home also. enjoy!
About the night awakenings, I went through it for a year with my Mom. I cut her door in half and locked the outer side. She would rest her arms on it saying "hi? hi? helllllllo?" all night long but was safe. I could only put a few things in her closet and drawers to play with or everything would be on the floor. Finally I took her and the neuro gave her depakote sprinkles rx to calm her brain at night, worked like a charm. good luck everyone, this stage does pass.
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lifeasasenior has very good advice. Our parents have taken care of us and then, not only are they no longer needed, we are taking care of them because they cannot. Mom said many times that it was not supposed to be this way and I think she felt bad that she was living with me and my husband when she should have been taking care of herself. I give my mom "jobs" to do during the day when there is nothing else for her to do but watch t.v. Her memory isn't good enough for her to read anymore (which was always her entertainment). She can fold washcloths, dish cloths and hand towels and several times a week I give her a small laundry basket with these items (she folds the same ones over and over) but she seems to have a sense of accomplishment and makes her feel like she is contributing to the household.
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The doctor thinks my mom has vasular dementia due to her heart condition. She wakes us every hour during the night with her call bell to take her to the bathroom (she is not mobile due to severe hip arthritus). I am her caregiver and she is also in hospice in our home. The hospice nurse visits once a week, I have an aide with her from 8:30 am to 4:30 am during the day. I have brought the night restlessness up to hospice...however they will provide only palliative care (medications to mask the symtoms not cure them). Since mom is in end stage renal failure as well, I hesitate to add more meds to the list. I am curious to understand more about the light therapy as I would like to try it. She will sleep during the day and be awake during the night. My husband and I alternate staying awake to assist her. It is extremely exhausting. We both hold executive level positions and need to be able to function during the day...which is becoming increasingly difficult.
Mom is not typically highly agitated at night, although there have been some nights where she appears nervous and snappish...mostly extremely restless, wanting to sit up and go to the rest room every hour. She is also dealing with itching due to the renal failure which annoys her when she is resting.
Any further information on the light therapy would be greatly appreciated.
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Iam lucky mum who is 82 dementia goes to bed between 7 and 8pm only gets up to go to the bathroom and I coax her back to bed and awakes on the morning between 7And 8am
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When you are not with her is she alone and stays up? If she is alone she may need more stimulation in the day to tire or if she has too much stimulation she may piddle as it allows her to functional and feel okay to her. There are many things going on to check on. I had a friend who had this and come to find out some was depression and not wanting to face her inabilities and she functioned when it was slower at night and gradually got her day and night mixed up. We had to try to get back one hour at a time kinda like you do on vacation and that may be key that she needs stimulation. Things I would look at is her routine and see how stimulating is it? Is she depressed? What is her favorite pasttimes that she can do in day to be engaged? Can you alter her routine an hour a day? Is she staying up late, sleeping a little or none at all. With the disease sleep patterns are altered. You may check her diet and digestive system to see if she is eating substances along with her meds to keep her vitamin B intac. Also her meds need review to see if they may be causing some arousal either by the drug or time of day taken. I know it is a lot but it is often a checklist to research and see what factors influence and what you can do to help. If able you might start collecting the above info coupled with h good geripsych behavioral review where you get her seen and have for them her 24 hour schedule of activities, sleep observed for amount and time, mood and times of changes along with sleep and meds. .
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My mom was going to bed at 7pm and waking up around 2am to prowl the rest of the night. About two weeks after replacing her regular light bulbs with some 'day light' florescents she started staying up later-- till about 9:pm.. and sleeping till 6:30 or so. You guys might try that. You can get the bulbs at Lowes.. and elsewhere.
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One reason may be that they are up running to the bathroom all night so they're tired during the day. Another may be a fear of dying alone in the dark, undiscovered until everyone is awake.
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I am lucky, my dad and I both had late night, late morning cycles. When I stopped working late nights to care for him, I had to work to get myself on a more daytime awake schedule, and as he has increased in his dementia, regulating sleep is work for both of our sakes. Blue lights, as in electronics, TVs and some clocks, tend to interfere with sleep. It takes 8 Hours for 1/2 the caffeine to leave your body (longer I suspect as your body becomes less efficient). I got Dad to trade his coffee after the first cup to Swiss Miss Coco (sugar free) and a drink with melatonin with dinner and beyond. The windows are covered in his room so he is not up at the crack of dawn (I get up at 10 am he gets up 10:30-11). We both have Ott Lights by our chairs, so there is full spectrum when we wake. He loves to eat, so I feed him about every two hours (yogurt, eggs, oatmeal, fruit after protein) He loves America's Funnies Videos so I help find interesting TV for him. At night, I have a sleep CD I listen to "Sleepy Rain" by Dr. Jeffery Thompson (Amazon). There are pillows with speakers in them, if your mom does not hear well, I play mine on an old boombox I got from Goodwill. Just rain sounds, no talking, very soothing and consistent use will make is a signal for your body to sleep, same time every day. My dad and I have memory foam to sleep on, and heated mattress pads (He does not wet through the diapers and pad), this helps relax the muscles. Lavender oil relaxes muscles also. Also, the SSRI meds for depression help me sleep better, and he is also on meds. I believe they also help decrease pain for some. Also, and maybe finally, oatmeal before bed and improve sleep. Good Luck.
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I am a 72 year old woman who is beginning to have these symptoms. I can't get to sleep until 2 or 3am. This started after a very stressful year. I get up later and later. If my neighbor sees my blinds closed after 11 am, she calls me. I want to change this pattern but I sleep best early in the morning. I am also up every 2 or 3 hours going to the bathroom. I live alone but my community (over 55) has many activities that happen before I get up. I used to get up by 8 or 9am and went to bed around 11pm. When some sadness entered my life I found that I was changing my routine. Maybe if you give your mother something to get up for, she will feel needed. Us old folks have felt needed all our lives. Now we are expected to sit in a chair all day. Find a job for your mother that you need her to do. My son calls me everyday and discusses some of his decisions or politics with me. He asks for my thoughts on things. When he visits, I get up earlier. Don't give up on your parents. They need to be needed.
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As I read this I find it a bit epic. The funny thing is I'm sure you as teens did the exact same thing. I recall it all to well..Tired from working the graveyard shift to finally have my schedule changed to only have my teens keep me up by being on the Internet all night , cooking and eating..I must say there are paybacks with mother nature. .
I too have insomnia and fear how I will be treated..Thank God for those abuse hot lines for the elderly. Remember social services might be able to help. .I suggest the melatonin ..im not sure if it legal to lock anyone in for their own room for protection. .Find a senior home if you are starting to have bad feelings towards them..Perhaps you weren't a peach yourself
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