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I'm at home looking after my Mom, in between doing a part time job and walking my greyhound (my best friend, as it turns out). I try and do all the housework, sort out doctor's appointments and make sure Mom is clean, tidy and warm. I do have a brother whose contribution seems to be a few phone calls, the odd birthday card and giving me a lot of unwanted advice!! Recently, though, I really haven't been getting enough sleep as Mom gets up in the night to bang on my bedroom door, shout out "Are you OK? Are you asleep?" then opens the door and wanders in. I'm then wide awake until the morning. She says I'm being ridiculous and imagining things. Then I'm up to clean up the messy bathroom and another day begins. Life isn't much fun and I wish I had more help. Love her dearly but she's wearing me out.

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Adriana, nobody can do all this alone. You need to find her a new living arrangement so you are able to help with what you can and live your life and get some sleep.
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Adriana, I am so sorry you’re having to deal with this. Caregiving on no sleep is impossible. It’s actually a hazard to your own health as well.

Your mother’s brain is broken. No amount of comforting, reassurance or even annoyance with her will “fix” her. You can try medications if the doctor will give them to you, but doctors don’t like to prescribe sleeping medications for elderly patients any longer. If they sleep walk, it’s dangerous. You can try nightlights, soft music, a TV left on...but there is no guarantee that anything will work. Some posters ha e said they lock their loved ones in their rooms at night. But that won’t stop them from banging on their own doors and screaming because they are afraid.

What I'm trying to say is that this is a common issue with dementia patients and their caregivers. Unfortunately it will only get worse. As Glad says, you cannot do this alone as much as you want to. Have you spoken with your brother and told him what’s going on? Ask him if he can come stay once a week or so, or if Mom can go to his house. There is no shame in asking for help and since he is so free with his advice, let him have the experience of caring for his mother to see just what you’re doing. Or, you can tell him you’ll have to hire an overnight sitter and if he’s counting on any inheritance, it will quickly disappear. You are doing the work of three shifts of caregivers round the clock. Consider checking out Memory Care for her. You aren’t abandoning her.
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As in all things, you will adapt. I do the same except with 3 people instead of 1 and run a business at the same time.

You get used to it. I'm up 3-4 times a night. I used to stay up for a couple of hours after each disturbance but now I can get up, deal with it and then be back asleep in minutes.

Learn meditation. That's the whole point of "counting sheep". Learn to purge your mind of all thought and you'll fall asleep again pretty quickly.

Until you embrace your inner zen, beer helps. ;)
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lealonnie1 Dec 2019
What terrible advice!
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I think people vary in how much sleep they need and how well they tolerate interruptions during the night. If I were interrupted 3-4 times a night as you are experiencing, I feel sure I would very soon have a complete breakdown. As in, needing hospitalization, or going on a 3-state killing spree (I'm only slightly exaggerating) or something else very bad. I need my sleep, deep restorative sleep to rest, repair, and rejuvenate my body and brain.

There are some people who seem to be fine with less sleep (I remember reading Martha Stewart preferred to get 4 or 5 hours a night, supposedly) but for many of us poor quality sleep night after night is a risk factor for obesity, blood sugar problems, dementia, depression, etc., etc. I think a care situation where the caregiver doesn't get to sleep is a non-starter. I don't think you should accept it.

OK, I think I've lectured you enough about the importance of sleep -- time for me to go to sleep myself! :)
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losingsituation Dec 2019
I used to be able to run on 6 ish hours a night, but since the old menopause started kicking my ass - if i dont get enough zzz's i spend the next two days in tears. I am sure it will even out eventually, but for now, it's absolutely crippling me. I am also a super light sleeper (now) and cant fall back asleep if something wakes me (also new).

If I had to be up multiple times a night i would have to be in a rubber room in no time.
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Get overnight caregivers. I'm convinced that my mother's every-two-hours trips to the bathroom (and accompanying waking of my dad who'd make sure she didn't fall) led to my dad's early death. He got up with her every two hours for five years, plus took care of all the cooking and cleaning, and it took its toll.
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lealonnie1 Dec 2019
Excellent advice!
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Thank you for all your replies. I've been looking up all her medication to see if anything she's taking is making her hyper. She's had a review and there are some new tablets. I think this may be when it all started. I'll check it out further. I liked the idea about meditation. It's the sheer frustration of not being able to sleep undisturbed that keeps me awake for hours. I need to deal with that. I am booking a break by the ocean in a few weeks. I have told my oh-so-wise sibling that he will be in charge of things then. My patient, gentle dog will be coming with me. He deserves a break too. I'll keep you posted. Thanks for the input. It's helped me.
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FloridaDD Dec 2019
Sounds like a plan, and talk to her primary care physician and let him know the problem.   Please do not listen to people who say you can get used to it.  If you have to, put a camera in your room to show her she is coming in.
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This is NOT something you should 'adapt' to or 'get used to', that's ridiculous advice!! Human beings need UNINTERRUPTED sleep every night if they are expected to function every day!

"Love" has absolutely nothing to do with the situation you're facing with a demented mother. Either get an overnight care giver for her or consider placing her in Long Term Care. Dementia reaches a point where it becomes totally unmanageable for 90% of human beings trying to do the care giving inside the home. Between incontinence, wandering, trying to cook, staying up all night and sleeping all day, it takes an entire team working 24/7 to manage these sufferers. This is why Memory Care communities are popping up everywhere like flowers! What your mother is doing at night is a common behavior with dementia, and not likely due to any medications she takes. Their internal body clocks get turned around is what frequently happens. Lots of napping during the day = staying up all night.

Please consider one of these options before YOUR health starts failing as a result of all this care giving. Also let your brother know what's happening and see what contribution HE would like to make towards her care.

Good luck!
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needtowashhair Dec 2019
You are absolutely wrong about sleep. That's not how we evolved. The idea of "uninterrupted sleep" all night long is a modern idea promoted in the post industrial West to maximize work hours during the day. It's not how humans have lived for hundreds of thousands of years. Through all of human history except for the last 100 years or so, people had to get up at night to take care of things. The big thing they had to take care of was not getting eaten. Sleeping through the night "UNINTERRUPTED" is what's unnatural.

I often see these erroneous claims about sleep on this forum. There is simply no basis in fact to support these claims.

Here's the science.

I've often read on this forum that a complete sleep cycle is 8-9 hours. It's not. It's 90-110 minutes.

"Sleep cycles usually repeat every 90 to 110 minutes."

https://www.ncbi.nlm.nih.gov/books/NBK279322/

It's natural for people to sleep through the night in blocks, not in one solid 8-9 hour "UNINTERRUPTED" block. As long as each block is at least 90 to 110 minutes, you are getting quality sleep. The historic human sleep pattern is two 4 hour blocks at night with an hour or so nap in the afternoon. The two 4 hour blocks at night are separately by an hour or two of wakeful activity. That's why I pointed out that it takes some people about a couple of hours to get back to sleep after being waken at night. We evolved to be that way. While napping in the West, outside of Spain, is frowned upon. Other cultures schedule that into the day. In China for example, factories schedule in a nap after lunch for all their workers. As long as you get a total of about 8 hours of sleep for every 24 hour cycle, you are getting quality sleep.

Here's a NIH metastudy that talks about sleep.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4972941/

It's a bit dry so here are some popular press articles.

"left to our natural inclinations in a 24-hour day, humans would have a period of wakefulness, an afternoon siesta, another period of wakefulness, a period of sleep, a period of wakefulness in the middle of the night, and another period of sleep. It may be biologically normal to be up in the middle of the night."

https://www.psychologytoday.com/us/blog/sleepless-in-america/201609/in-the-middle-the-night-it-may-be-natural

"Humans slept in two four-hour blocks, which were separated by a period of wakefulness in the middle of the night lasting an hour or more. During this time some might stay in bed, pray, think about their dreams, or talk with their spouses. Others might get up and do tasks or even visit neighbors before going back to sleep."

https://www.livescience.com/12891-natural-sleep.html

Sleeping in one solid 8 hour block at night wasn't a thing until the industrial revolution. Then it was introduced to force workers onto a schedule to maximize factory efficiency, not for their health.
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My mom has sundowners dementia and she was living by herself for a bit. I would get calls at 3:00 and 4:00 and 5:00 a.m., because mom's internal clock was off. She would apologize after realizing what time it was, and would be up all kinds of time. Breakfast at 10:00 a.m, and asleep from 12:00 noon until 3:00 in the afternoon. It got worse and we realized she could no longer stay by herself.We tried getting nursing services to come into help her three to four days a weej, but mom did not like any of the nurses who came in to help. She came to live with me for awhile, but we all knew that in order to keep our sanity, she needed 24/7 care which we could not give without burnout ourselves. With a guilt ridden heart, i agreed to put her into a memory care unit. She is only a few minutes away, and i visit as often as i can ( 5 days during the week) Is she happy? No. But she is learning to adjust and realizes that she needs more help thsn we can give her. My advice is, be honest with yourself and realize that mom needs more help than you can give. You will do her no good if you are put in a hospital for an extended period due to your own health crisis.
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Okay, I was you! I even had the rescued greyhound dog! I loved my grey too. It killed me when I had to put him down. He was the sweetest dog in the world to me.

I was up all hours of the night too and it nearly killed me! Sleep deprivation is so hard on us. I don’t know if you have children but remember when they weren’t sleeping through the night yet and how tired we were? Geeeez, that first good restful night of sleep was heaven on earth!

My daughter’s pediatrician had a fit when I told her that I wasn’t sleeping because I was still breastfeeding her every time she cried at 18 months old. She thought I was crazy and told me to stop!

She told me that I needed to sleep and that I wasn’t helping my child, that she no longer needed to be breast fed at that age and my sleep was more important. I stopped breastfeeding immediately after that visit to the pediatrician. The pediatrician was right.

I had mom in my home for nearly 15 years and looking back I honestly don’t know how I survived. I suppose I was on autopilot. Well, that isn’t healthy either emotionally or physically.

Thank God I reached out for help here on this forum and in a therapist’s office. People gave me sound advice and told me I was pushing myself to the limit. I finally hit my breaking point due to a number of circumstances. Just having too much togetherness is hard.

Please listen to everyone who tells you this is far too much. I am telling you too. I had to learn the hard way. Learn from my mistake and don’t follow in my footsteps thinking you can do it all. I knew that I couldn’t after awhile. I should have followed my gut instead of being guilted by my mom and brothers!

Well, the tables are turned now. Now my brother is dealing with it because I told them if I was doing such a poor job because mom didn’t get everything that she wanted that she could go live with him! Sadly my relationship with my family has deteriorated. Don’t put that strain on your relationship.

It’s funny that her doctors always complemented me on taking such good care of her. She expected me to sacrifice my entire life for her. My marriage took a hit. I had no privacy in my home. I did not get to see my own daughters. It became awful.

Granted my mom did not have any form of dementia but she has Parkinson’s disease and it’s challenging also. It’s too much for one person. Too much! Entirely too much!

Did you hear me? It is too much!!!

I am not trying to be sarcastic but I want to make sure that you hear me loud and clear.

I do empathize with you. I was in your shoes. That is why I know how you feel.

Please listen to lealonnie and others on this site that helped me to see how difficult it is to care for someone in these situations. Hire an evening sitter or find a facility. Get you much needed sleep!

Best wishes to you and your mom.
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Needtowashhair, the science about sleep may be correct, but we didn't "evolve" to be that way - even though evolution is taught as fact in schools, it remains an unproven theory, you know (you DO know that, don't you?).
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RedCrush Dec 2019
OMG.
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Take her to the doctor and get her on the proper medications to control her agitation and anxiety. Given enough time, sleep deprivation can kill you. It changes in your hormones. Cortisol AKA the stress hormone goes up and your body stops metabolizing glucose properly. Glucose is brain fuel - enough said?

Sleep deprivation also weakens your immune system. Hello, antibiotics, which bring a host of side effects to the party in your gut including diarrhea. Diarrhea lowers your potassium, which plays a role in *every* *single* beat of your heart.

Sorry but you can't cope if you're dead. And whose going to look after your mother and greyhound then?
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NeedHelpWithMom Dec 2019
Wise words.
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Please do not listen to the "evolution" theory of sleep.   In hunter/gatherer time, anthropologists say that typically one or two teens or young adults would be the guards at night.  They have better eyesight.   They would then be allowed to sleep during the day.  Middle-aged people, parents did not work as guards, and slept through the night, unless the guards, teens woke them up.  

Then as we moved to farming, again, people slept through the night, and maybe ONE person checked the barn.  

Only with the industrial age, do we  have shift workers, and there are MANY studies showing how dangerous shift work is.
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lealonnie1 Dec 2019
Good info! What galls me most is that ANYONE would be telling an exhausted caregiver to 'suck it up buttercup' and it's ok to stay up all night and 'just meditate' and yada yada. As if we don't already DO ENOUGH!
We need sleep. It's okay to sleep. It's okay to be tired. It's okay to say 'enough'. It's okay to cry uncle. We don't have to be superhero's or do more than we can bear.
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I work the overnight shift. My line of work requires me to work the overnight shift.,I didn’t go to college and my family couldn’t survive on minimum wage. My husband also worked the overnight shift from 2011 until now. He just retired. When I talked to my doctor about SLEEP he said get 8 hours a day.,It doesn’t have to be all at once. Get 4 hours in the morning and then get 4 hours in the late afternoon. It has worked for both me and my husband. I have also taken sleeping pills in the past because my mind won’t shut down. I wish I could sleep like a baby, but even babies wake up all hours to be fed. Do what is right for you. My mother use to make me go to bed when I was a child at 7:30pm. Guess what? I never fell asleep at that time. I never fell asleep before 9 or 10.
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Losing situation I agree with you. I have a terrible time trying to sleep since menopause even when I have time off from my job. I have 6 weeks vacation a year and it’s hard for me to sleep at night on vacation after working nights on my job. But once I hit menopause it was even worse trying to sleep. Years ago when I suffered from depression I couldn’t sleep either. But I certainly am not advocating getting up in the middle of the night to caregiver for someone. When I can’t sleep I stay in bed and close my eyes and hope for the best, but I would never get out of bed to do anything except go to the bathroom. Which is another thing that interrupts my sleep. I have to drink a lot of water at work because it’s hot in their and it’s a physical job. So I always have to get up a couple of times when I’m in bed to go to the bathroom. Cutting fluids before bed isn’t an option for me. I’ll be retired in 4 years so maybe then I can get uninterrupted sleep.
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I have terrible sleep patterns, I hear "everything" and also sometimes I can't shut my brain down. I get up at 4 am for work 3x a week, and I do sleep better if I am off the next day,, but still I feel lucky if I get 6 hours. When my dad was alive he got really screwed up sleep wise,, thought he had to go to work at 2 am, was stubborn. After a 36 hour bout of no sleep for him, and behaving in a violent manner ( I get it as all of us were feeling pretty violent by that time) we put him in a MC for a respite. He ended up thinking he was in a hotel, and was pretty content. He did pass after a month, so for him it was end of life behavior.
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As long as we are talking about sleep, I heard on the radio over the weekend where they did a poll of adults and asked them how many nights a year are they having INTERUPPTED sleep? The poll said 360 nights a year are INTERRUPTED!!! That leaves 5 days of uninterrupted sleep a year. What was the number one interruption? Waking up to your partner SNORING!!!!
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NeedHelpWithMom Dec 2019
Elaine,

I am so used to my husband snoring that the quiet feels funny when he is out of town on a business trip.
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Talk with your family doctor there are some medications that can be given before bed to help your mother sleep through the night.
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I can relate to what you are going through. My Mom did the same thing and I was constantly exhausted. I would be peacefully sleeping in the middle of the night and she would start screaming my name. She was up for the night and so I had to be too. I get depressed when I am sleep deprived, and so I had to deal with that too. The Dr started her on risperdone, and it did help. Peace to you.
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Annessister Dec 2019
Risperidone is a drug "Not recommended for elderly with dementia, It may cause DEATH." Doctors are putting elderly on Risperidone because the elderly are not considered beneficial in our society. My sister was not sleeping at night in a group home and the doctor put her on Risperidone. It only made her groggy and did not help her sleep at night. Then he doubled the Risperidone, which made her a zombie , still did not sleep at night and she finally lost her balance from being so drugged. She fell and was hospitalized. The new doctors at the hospital took her off of the Risperidone.(Thank God) I now have my sister back. She no longer zones out all day because she is so tired, and wants to sleep, but doesn't. I have no respect for doctors who prescribe a drug for elderly with dementia that is not recommended. All of you will sometime be elderly (God willing) and may have a doctor who doesn't value life of elderly with dementia. So they will give them anything to shut them up!
I agree that melatonin may work. It can cause some memory loss while it is being taken, but memory will return to normal (normal for that person) when it is discontinued. Benedryl caused dizziness when my husband and I tried it. That could be dangerous for elderly falling.
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I have baby proofed my house. Put baby gates up so she can only get from her bedroom to the bathroom. It gives her some freedom to roam but keeps her confined at the same time. She can't get to my door as the baby gate is about 4 feet away. During the day when we're all awake the gates are open. I also have a baby monitor in my room which helps keep watch on her. Amazingly she has learned that when the gate is closed to stay away from it. Best of luck to you.
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AnnReid Dec 2019
My loved one put her underpants over the baby monitor camera so that we (or a hired caregiver) wouldn’t watch her while she was sleeping. Although her short term memory is all but gone, she still has some startling insights into her surroundings and the management of her life.
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Could you and mom share the same bedroom with separate beds? This way she could check on you (and vice versa) without getting out of bed. If she wakes you it is probably easier to go back to sleep when you (or her) do not get out of bed.
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againx100 Dec 2019
OMG noooooo. That would be 1000 times WORSE.
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That is Deminsha. It WILL NOT get better!!. Ask her Dr. perhaps giving her an ambiem to sleep thru the nite. Can you find someone else to stay a few nites a week so you can sleep thru these nite walks. Otherwise put her in a home.
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gladimhere Dec 2019
Dementia progresses, there is no proven, scientific method that will show a treatment will improve the brain or heal it. Though there are studies that are undergoing that show promise.
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I just looked thru the answers here. There are some answers completely unrelated to the question at hand. Sorry to see people are abusing the forum
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gladimhere Dec 2019
Lacy. I see you are very new to the forum. Welcome. Everyone here has been involved in caregiving and have different experiences and perspectives. Sometimes we all ramble and get off topic. It is part of the forum. Try to understand many of the posters here are under tremendous stress. Your participation is welcome. We all try to be supportive of each other and sometimes will be off topic. It is part of the culture.
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You will have to get used to it. It doesn’t end. There will be good and bad nights. My Mom will get up 2-4 times. Thankfully, my sister and I take turns staying there. Sometimes it is just to help change her pants or else she wants to go home and needs to start packing. Sometimes she’s straightening her drawers or getting dressed at 2:00 a.m.because she thinks it’s morning and she has to go to school or church. Now she thinks her Depends are slippers and I will get up and she’s putting them on her feet. It’s always something new and I don’t foresee it getting any better. Mom is 97 and very healthy! We look at it as she took care of us when we were young and this is the least we can do for her because we love her.
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FloridaDD Dec 2019
I strongly disagree.  OP may have to hire night time aids, or put her mom in a facility.  At least your sister helps.
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You could try an extended release melatonin available on Amazon and local drug stores. Also a weighted blanket may be helpful as well. In addition, you should ascertain whether she has sleep apnea which does trigger people to wake up multiple times and can be confusing. Also, I’d suggest reviewing her medications. I was able to wean my husband ( lost weight) off one of his beta blockers due to research that they can have a detrimental effect in memory. Medications, especially in the elderly, can have a negative effect on their quality of life and unfortunately, are not regularly monitored/reviewed as they lose weight etc. Naturally, be sure she is sufficiently tired prior to bed. Thankfully, my husband sleeps well right now except for frequent bathroom wake up calls. These are diminishing a bit. Best of luck to you!
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NYDaughterInLaw Dec 2019
Good answer!
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I know first-hand how hard this is for you. My mom used to be up most of the night and sleep all day. It is draining, exhausting: physically and mentally. If you can't count on family, find friends. This is when you find out who your friends really are. My mom will be gone almost 4 years now.... Oh, how I wish I had another day with her. I miss her so much. Folks used to tell me to enjoy the time I had left with my mom but I was so exhausted it was hard to look at it that way. Now I'm telling you the same thing as I am living it. Don't stress about every little thing. It will be ok. Hold your mom and tell her you love her every day. She won't be around some day and your life will feel empty without her. Praying for you. Merry Christmas.
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blackhorse1 Dec 2019
Hi Carmen,

My Mom is gone now too, just three months. My sister lived with her and did the multiple wake up calls in the night for years but worst the last ten months. I did not do them as I have my own family. But now I feel so badly not helping Mom more, especially at the end when I told her she really to put a diaper on at night when it was 1am and she was carrying on with my sister. My own daughter was along and starting to lose it too as she has never spent the night there and was downright tired herself not really understanding what Grandma was doing. Mom was gone in just days after that as she wanted no part of a diaper and by then, even my sister and I could not move her to help her as she just was very unhappy being dependent. So sad to think about it. How I wish I would have just grabbed her and hugged her and said I am sorry but then I was more like sad, angry, and disappointed. I think I also did not realize what Mom had which really was some form of dementia developing. I was expecting her to reason like she used to but then she was not operating as her old self although I wanted her to.

God bless and Merry Christmas.
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This is really the most difficult part of Care giving a loved one, and can push the Carer into burn out. Obviously when you rise early in the mornings and put in a twelve hour shift then you must get the remaining twelve hours to unwind, chill and sleep, but unfortunately it rarely if ever works out like that.
Is there any chance Brother might step in and Care for Mother at night to split
the work load and afford you time for you, or consider getting Mother placed
in a good Care Home facility near to where you Live.
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Sleeping pills are a godsend.
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Pity4mom Dec 2019
Which sleeping pills are best? My Alzheimers mothers dr says tylenol pm.
I cannot say it works.
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This is why I will never have my mother live with me. I have stayed at her little apartment overnight, and she's up and down all night, talking loudly to the cat or herself, going to the bathroom, grunting, moaning, etc. She takes a nighttime sleep aid, but it doesn't keep her asleep. No sleep makes for a cranky daughter the next day. It's just like having a sleepless toddler all over again, and I won't put myself through that. I'd rather hire an overnight caregiver to stay at her place when that time comes.
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Sounds like you need to "fix" this immediately. Here are a few suggestions:
1 - Make sure she only gets short cat naps during the day - 30 minutes or less. Then, she will be tired at night.

2 - Additional exercise for mom will also help to tire her out.

3 - Ask doctor for some sleeping medications. Try Benadryl 25 mg by mouth at bedtime.

4 - If all else fails, hire a sitter to be with her at night so you can get 7 hours of good sleep.
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againx100 Dec 2019
Perfect answer!!
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CBD Gummies helped my mom for a while - one at bedtime. They seemed to both relax her and help with some chronic pain she has. But things change constantly, and she has good nights and bad, it's hard to predict.
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