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I’ve really had it now with times during the month my grandma (with dementia) will scream in the middle of the night, bang on the walls and call for help. I can’t go back to bed because I’m so wound up. She’ll do this a few times a week then it will stop and it will be back to normal for a while. She’s quiet and sleeping is great BUT I’m still having trouble sleeping because I’m anticipating and fearing that I’m going to get woken. So, I keep waking up in the middle of the night between 1-5am. I wake up multiple times and can’t go back to sleep. I get more frustrated because it’s like my mind is playing tricks on me. I just want to freaking sleep again. I’m trying taking magnesium, meditations, ear plugs, sleep music but still my body wakes up for no reason and it’s adding more sleep anxiety because every night I’m just like please god let this be the night I get a full sleep. It’s been almost a week exact since I’ve had a peaceful restless sleep. Does anyone else struggle with? How can it be easier please I really could use some support and help?

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I started doing things like when I had a baby, sleep when my mom sleeps. I also get woken up a few times a night, the worst is when she calls and has the lights on! Grrrr. Can't go back to sleep once my eyes hit the lights! I watch 30 mins of a show in the dark and try again to sleep. Naps are the only thing that saves me!
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Reading this post plus your profile makes it real that you’re doing a job far beyond what any one person should be, or is really even capable of sustaining. Your family is hugely taking advantage of your kindness. It’s not your fault that you can’t adequately sleep, no wonder, there’s far too much responsibility resting all on you. Please let your family know you cannot keep this up and a new plan must be found for grandma’s ongoing care, in both of your best interests. I wish you peace and rest
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Can you possibly get someone to stay with her a few nights a week while you go elsewhere (a friend’s/hotel) to sleep? La k of sleep and anxiety will make you sicke!
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Might be PTSD. You really need to get out of this. She can’t get better and you could get a lot worse.
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Texasgirl, I am concerned that according your profile you have been at this since 2017, when you graduated from high school.

Sleep deprivation is bad. This situation could go on for years. . . What are your plans and why is a facility out of the question?

I’m wondering if your beloved grandma would truly want you to sacrifice your current health and future wellbeing like this.
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I think your body is telling you it is time for a different living arrangement. When you get woken up in the middle of the night like that it turns on the brain and it can be hard to get back to drowsy sleepy feel. I have had insomnia for ten years and I wake up a few times a night. I have learned that the best way to get back to sleep is not let your brain start spinning with thoughts. That will be tough to do being woken up with screaming and banging. Also don’t look at the clock when you wake up. I have a really boring fantasy that I use to shut down my mind when I wake up. If your really tossing and turning get up for awhile. I will make sleepy time tea and sit outside.
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When are you going to say enough is enough and walk away from this? And why do you feel that you are the one responsible for your grandmother's care when you aren't?
Until you relinquish her care to either a facility or other family member(s), things will never change, except to only get worse.
Lack of sleep at any age is very dangerous, and can lead to many health issues, so until you make yourself a priority things will continue as they are.
I was initially going to recommend melatonin to help you sleep, but in all reality you need to remove yourself from this "only going to get worse" situation, sooner than later. It will be then and only then that you will be able to once and for all get a good night's sleep.
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I had a similar situation with my husband. He has mild dementia and prostrate problems which cause him to get up at least 4 times a night to urinate. Once he turned the light on to get up I was fully awake and unable to go back to sleep for hours (he fell asleep as soon as he returned to bed).  After about 6 months of limited sleep, I decided I needed to move into another bedroom. I put a baby monitor in his room and moved upstairs to the spare bedroom. I found that as long as I didn’t have to be subjected to the “light” I could eventually get back to sleep although it took some time (hours some nights). Speed forward a few months and I was once again awake half the night because he would call me to come help him (even when he really didn’t require assistance - I think he just needs to know someone is there if he needs them). I spoke with my PCP and he suggested I try taking 5-HTP to sleep at night and use an app called Headspace (meditation app) to fall asleep again.  I scoffed at first but when it became unbearable, I took his advice and bought the 5-HTP supplement (Walgreens) and downloaded the Headspace app (I’m sure there are many other apps out there less expensive than Headspace). It took about 2 weeks for me to acclimate to the 5-HTP (I take 150 mg but I suggest you start at 50mg and go from there); however, I can still get up if I’m needed without feeling “drugged”. As soon as I get back in bed I activate the Headspace app for sleep (my favorite is under “falling back to sleep” – Racing Mind. It’s a 10 minute meditation that has me back asleep before it finishes…… It has literally saved my sanity
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Try 3 mg of melatonin at bedtime. I find that if I wake up it allows me to go back to sleep, and it doesn't make me groggy in the morning.

It's a natural chemical your brain makes to sleep, so it'll help train your brain to turn off again.
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Like others I'd say maybe it's time Granny move to assisted living or nursing home. I commend you for all you have done for your beloved granny thus far and continue to do. But honestly, you have been doing this for what, 5 years straight now? And like others have said, it will only get worse.

I totally can empathize. I too have older brothers - 3 in fact, and am the only girl. I was left to care for my father with Dementia and had done it alone, over the last 6 years. Unlike you I wasn't LIVING with my father which would have been impossible. But I still was driving 5-6 hours to NJ every other month, then every month, then every 2 weeks to care for him - staying weekends, extended weekends, all while working a full-time job.

Eventually I said enough - I can't take it anymore, he needs assisted living and literally moved myself and him down to Florida in order to afford it all.

But guess what? I developed a heart problem and now need beta blockers maybe for life - and I'm pretty sure it's from all the stress and anxiety this entire ordeal caused me over the years.

Don't let it get that far. Lack of sleep is serious and I totally know what it's like to wake up, heart pounding, panicked and waiting for the next shoe to drop.

Your granny I'm SURE, would NOT want you suffering like this. You ARE still a great granddaughter if you have to place her in a home. And she will still get great help - maybe even better than what you can provide...

So think about it. At least consider it. There will come a point when you likely won't be able to give her all she needs - the dementia just gets worse and worse. My Dad can't even open his eyes, hold a conversation, feed himself - I'd never be able to handle him on my own. He gets violent at times - moves furniture around. You don't know what granny might need so just at the very least look into it.

In the meantime - yeah the sleep apps and drugs/supplements might help. Good luck!!!
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I put a couch in my mother's room and slept there most nights. It made my mom more secure as well as myself. She was starting to try and get up by herself. This worked very well for us. Her neurologist wrote a script for Ativan on a when-needed basis. It helped her get to sleep quickly and I slept as well. I only gave it to her when she could not sleep and was agitated. We turned and changed her every 3-4 hours during the night. I took melatonin 5mg when I could not sleep and was effective. Hope everything gets better for both you and your grandma.
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Your description of waking with your heart pounding reminds me of my former sleep issues. I got tested for, and diagnosed with, sleep apnea, and now have a CPAP machine which enables me to sleep through the night.

I agree with others who encourage you to find a way to get your grandmother into care. As the sole caregiver for my mom who lives with me, I am pursuing care for her because it’s getting to be much for me to manage.
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MattyWelch Oct 2022
I really do think the only way to get rest is for grandma to go elsewhere. This is like having a newborn baby, except the baby never grows up in this case. When I have bouts like those I take 1/4 sleeping pill before bedtime the next night. Yes, you can cut them up. It works for me.
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I listen to audio book or have the TV on a movie. I focus on those until I fall asleep. If I wake up and refocus and let sleep take over again. Otherwise, my brain can go from 0 to 60 faster than a race car!
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Talk to her doctor about medication that can lessen the anxiety and maybe allow her to sleep better.
I have to tell you though if you are getting up at night to change her you will still be getting up at night long after your role as caregiver ends.
It was probably a full year before I was able to sleep through the night fully not waking to listen if my Husband was restless. (although I never had him screaming or beating on the walls)
Hiring an overnight caregiver is an option as well (grandma pays for caregivers)
If this can not be managed and it effects you mentally and physically it might be that you have to look into Memory Care for her.
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I have trouble sleeping too after a long day of taking care of my wife I have trouble sleeping. I found some strenuous work during the day helps. Also after 2 or 3 days of not sleeping I may get a good nights sleep. Also regular sleep times help. It is usually after the nightly care that I am just too wound up.
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Hi, am reading this and thinking I could have written it myself. I don’t have any answers but you’re definitely not alone!!
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Hi Texas Girl
I am just starting my 6th year of caring for my wife Vascular +Lewy body
You have described far better than i could have done the relentlessness of disturbed nights and the effect it has on the carer.
Well done let's hope it prompts some positive advice to replace -
a glass of whiskey or a sleeping tablet !!!
Terry C
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technophobe Oct 2022
I'm in my fifth year of caring for my mother with lewey and vascular. I've managed to get a night sitter for one night a fortnight so I can sleep but it's still difficult to switch off. I can quite honestly say I've never been so tired in my life! Sadly I don't drink. :)
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Well said, texagirl.

Precisely what I've been dealing with for 2.5 years, and it's taking its toll. Chronic interrupted sleep and the stress of listening to someone lie in the bed and yell and talk crazy for hours has aged me 10 years.

In addition to the dementia rages, I have to have a bed alarm that goes off when my mother rises out of the bed so I can get up and get to her before she has the chance to fall.

I too, struggle with getting back to sleep and it can take up to two hours, depending on what's going on, and then within 30 minutes my mother will be awake and at it again.

The adrenaline rushes that all of this brings on will harden the arteries and cause other health issues, and I try so hard not to be disturbed by this disturbing nighttime dynamic, but there again, it's taking its toll.

I try to keep my mother up most of the afternoon and in the kitchen until around 6 pm every day. She usually spends the day yelling and fussing and if I keep her mouth busy - with chewing gum, food, water, candy, it's quieter. But she's the loudest person I've ever known - always has been.

Every night I give my mother melatonin, a CBD gummy and magnesium glycinate to help her to calm down and sometimes it works and sometimes it doesn't. I never know when I go to bed what the night is going to be like.

Some people have had success with pharmaceuticals, but they have the opposite effect on my mother.

I'm terrified that I'll be unable to break the pattern when the time comes that I can sleep again.
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Chris52 Oct 2022
Wow. I just read your profile. I’m glad you’re aware of the cost of all this to your own health, and hope you can make decisions you are at peace with.
I have come to believe it’s unfair to expect ourselves to stick to keeping promises at all cost. You, for example, had no idea of what it would mean for you to keep your mother out of a nursing home. Of course only you can decide what to do at this point. All the best!
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Like “my2cents,” I found audiobooks to be extremely helpful, and also sleep stores on “Calm” app. Audiobooks need to be something you have already listened to so that they are not stimulating, and it’s important to set timer to turn off in 20-30 minutes). “Calm” app is expensive unless they offer a substantial discount, but my sister says you can find many free stories online. I find the train stories great! Also, Mary Berry does one about the details of preparing an English tea, which I have listened to countless times (but only the first part because I fall asleep).

Over the years I have practiced all the sleep hygiene advice, and came to know it doesn’t all fit everyone. For example, if watching a little tv in bed is what relaxes you for sleep, you break that rule.

I also found it helpful to stop eating early evening.

I do hope you can consider whether other arrangements are now warranted, as others have suggested. I know it’s really, really difficult and you are trying to do the right thing.
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Fortunately, right now my husband is going through a fairly calm stage but I know it will not last forever. Reading your post brought the memories and anxious feelings back to the front of my mind. Sometimes medicine changes can improve or even make sleeping worse. Having my husband re-evaluated from time to time has found new "medicine cocktails" to made a difference. Called a cocktail because it sometimes takes a new combination of meds rather than simply adding one new one. There are pharmacists who specialize in geriatric pharmacy. Check out... https://www.ascp.com/ . Last time we used one, insurance did not cover the charges and that may change but it was the best money we spent. Sometimes it was simply recommending a change to the routine of when he got certain meds and other times it was suggestions of med changes or dosages with a report to take to his neurologist to consider. The consultant does not know everything about neurology and the neurologist does not know everything about pharmaceuticals but working together can help find the right mixture.

Another thing I find very helpful brings my Christian beliefs into play. If this is not you, I am sure you can find a similar substitution that works for you. When I can't sleep it is because of all the random thoughts racing in and out keeping me from relaxing. Praying never worked because every time I would pray for myself or someone else, my mind would then begin racing down all the rabbit holes of the issue for which I am trying to pray... causing more anxiety. Instead I begin singing hymns in my head which seems to block out the random thoughts. When praying my own words doesn't seem to help, I have found I can sing the Lord's prayer in my head and the anxiety seems to begin to melt away. There is something about singing songs I've known for many years that calms my mind and heart. I think it is because the words come naturally and without a lot of thought and if I forget them, a few la-la-la's work just the same. Also singing the 23rd Psalm has been good but mostly simple hymns. Sometimes it isn't even Christian music but just humming classical music in my head with no words! It is all about blocking out the random thoughts with something calming that helps me drift off to sleep. The random thoughts only build anxiety for me.

The last resort was accepting a prescription for me to help with the high level of anxiety I experienced early in the pandemic when I learned if my husband went to the ER I could not be there, knowing most people could not understand his speech. I resisted because of the concern that he would have a bad fall if I was in a deep sleep and not hear him getting out of bed... then being hospitalized without me there to advocate for him. My geriatrician finally convinced me she could prescribe something very mild at a low dose and I agreed and has helped.
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After I started taking care of my parents 24/7 I started waking up and not being able to go back to sleep. Mind just went back to work and wouldn't stop. That was with no one waking me.
I started taking melatonin, only 3 mg, I can always wake up if I need to, and don't seem to be groggy in the morning. If you try it you may need to play with the dosage until you find the right amount for you.
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HeartBroken1948 Oct 2022
I do the same 3mg Melatonin almost nightlyl. I have been primary Caregiver for several years now, I am 74 Years old taking care of my 78yo Dementia patient / exwife. There are time's when I require a bit more perhaps a 5mg but only if she has had a relative peaceful day (not many of those) and those are judgement calls and only If i feel she will sleep through the night. I've not had a day off in nearly 5 years.
We as caregivers are only as good as we are, IF we take care of ourselves.
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I say this with compassion. The strain on you from her care has invaded your essential need for rest. Please consider memory care facility where skilled professionals will see to her specific needs. Here’s to better days ahead.
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As a 73 year old woman who has had episodes of screaming and sleep talk most of my adult life, I can pass on that my physician told me the only real solution is for ME to take a light, nightly prescription sedative. My poor husband has endured some pretty severe sleep-interrupted nights. I have hesitated to take the sedative, because the doc said it's purpose is pretty-much to knock you out. He also told me that the brains of people who are sleep-talkers/screamers just don't turn off during sleep. My DH has several chronic conditions that are life threatening. I'm afraid if I take a pill, I might miss a call for help. BUT, maybe in a caregiver role, it might be okay for you to give such medication to your grandmother. It's worth discussing with her doctor. Sleep is too vital to our health. Good luck.
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Mild anti-anxiety medication for you might help you sleep better when your grandmother is not screaming. Anti-anxiety medication for your grandmother might reduce her episodes of nighttime disturbance.
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Ah, the joys of insomnia! I've been dealing with this lately a lot, too, and you have my total sympathy. The biggest problem I find is it's hard to think straight on 3 or even 4 hours of night's sleep. It's complicated if you have any conditions or other medications (i.e. blood thinners) that have to be carefully checked in terms of what you can put in your body to lull you to sleep. Someone on this forum recommended Tylenol PM and it "somewhat" works, i.e. better than nothing as they say. Last night waking up about 4 am I tried some Chamomile tea with honey. We'll see. Good luck. zzzzzzzzzzzzzzzz
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eat-pray-love Oct 2022
Keep in mind: Honey is sugar. Sugar will keep you up.
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What you are experiencing is very common and really more like a PTSD response. You have anxiety. I was an amazing sleeper my whole life. 7-8 hours uninterrupted knock out sleep was my norm. No sleep issues at all and I could sleep through anything. Then my husband was DX with ALS and it changed me forever. He passed over 4 years ago and I still sometimes wake up in a panic in the middle of the night. Now with my fathers dx of ALZ it is more frequent. I have a prescription for Ativan and on nights where I simply have to get good sleep I take one. Works like a charm and I don’t feel groggy the next day. You can also give it to you LO if you get them a prescription. It’s a controlled substance so DON’T give it unless they have a prescription for it. Some people say that it can can hasten decline in an ALZ patient, and not to sound crass or uncaring, but would that be such a bad thing? The way I look at it is that the least amount of time someone has to live with this terminal beast of a disease the better for them.
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I never drink any caffeine after noon. I use a eye mask,ear plugs. If I cant go back to sleep I take 5-10 deep breaths . Hope you wellness 🌺🌺🌺
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We typically take magnesium and 3mg melatonin nightly but go through similar times of waking up, mind getting busy and not being able to get back to sleep. I saw this Nature’s Path Well Blend formula called ‘Back to Sleep’ that’s designed specifically for those times. It’s a quick dissolve tablet that contains low-dose 1mg melatonin and “CALM MIND BLEND OF L-THEANINE AND GABA: Unwind by relaxing your mind with L theanine, and help support a calm and relaxed mental state with GABA.”
Haven’t tried it yet, but it sounds promising!
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eat-pray-love Oct 2022
I heard Melatonin interferes with the bodies natural production of melatonin?
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I don't sleep great. Walk 4 miles every eve + workout 45 mins + take CALM Magnesium. I listen to Podcasts via headphones..to try to drown out my thoughts. Helps sometimes, not always. A friend says I should try CBD Gummies.. I am not going to take something heavier, as in sleeping pills.. Sounds like G-Ma could use some sleeping meds? Anything her Doc can prescribe? You need more sleep.. PS I love short power naps! Can you get a 20 min in there some days?
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Your brain can get stuck in an anticipatory cycle after a time with the repetition of a certain action from another individual. How long has your grandmother been doing the wake-up and screaming? Has her MD prescribed anything to help her sleep? You need to speak to your MD who could perhaps help you with something to help you sleep and a therapist as well, there's MD Live for a virtual therapy session and if your insurance covers Behavioral Health, it's usually at $00.00 cost to you to at least get you started so you can get some sleep, sleep deprivation is not good! Wishing you all the best!!
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