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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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!
Helpful Answer (23)
Reply to lealonnie1
needtowashhair Dec 15, 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."

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.

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."

"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."

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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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.
Helpful Answer (20)
Reply to gladimhere

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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Reply to NYDaughterInLaw
NeedHelpWithMom Dec 16, 2019
Wise words.
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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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Reply to Ahmijoy

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.
Helpful Answer (12)
Reply to AdrianaMonti
FloridaDD Dec 15, 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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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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Reply to Ginny60

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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Reply to anonymous982826
lealonnie1 Dec 15, 2019
Excellent advice!
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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Reply to deborahparlett
AnnReid Dec 17, 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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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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Reply to NeedHelpWithMom

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.
Helpful Answer (10)
Reply to CarmenP
blackhorse1 Dec 17, 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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