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My mom (86) has somewhat moderate dementia. I live with her and am her primary caregiver and it’s been a slow decline for the last 5 years. She recently had a bad UTI and ended up in the hospital and then rehab for several weeks. When she returned home, she was incontinent, much less mobile and her dementia seemed to have progressed.



After a setback of another UTI, she was unable to get out of bed, and I was changing her diapers. The home health people told me maybe I should get her back into the hospital and rehab again. But it seemed to me that being in the hospital was what got her into this, and I decided that since I had overcome my main stumbling block, which was learning to change the diapers of an adult in a bed (thank you YouTube videos and home health aides), that I would try to keep her home and see if I could help her improve.



And miracle of miracles, she has! She started using the bathroom again one day, and has gone back to wearing pullups instead of briefs. She also is more alert, and seemed to get her energy back and can walk some with her walker. And therein lies the problem I am now having: at night, she gets out of her bed to use the bathroom and most of the time doesn’t use her walker.



We’ve had to pick her up off the floor a few times and I am so worried that one of these nights she’ll be hurt. She is sleeping downstairs in a hospital bed. We are upstairs and can’t hear a thing that goes on down there. I set up a baby monitor which helps, but my hearing is not that great and it’s hard to tell sometimes what I’m hearing on that thing. So, I got a camera that I can see her on. When I hear something, I look on my phone to see what she’s doing and sometimes I see an empty bed so I rush down to find her (most of the time) safe in the bathroom, but no walker used. Sometimes she goes elsewhere after the bathroom and I find her sitting in her chair in the dark or looking out a window, or lying on the floor (luckily our house is heavily carpeted).



Some nights she gets up 3 or 4 times, and some nights she sleeps all through the night. But even when she does that, I’m up every couple of hours checking on her with my phone. Ugh, it’s taking a toll! I’ve tried putting walkers all around her bed (we have 4) so that maybe she’ll use one, or just be discouraged from getting up. Sometimes it works, sometimes she just pushes them aside. My next idea is to put some little bells on the walkers so I’ll hear her, and as soon as I get a chance I’m going to try that.



Has anyone else had this problem, or have any other ideas?

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Falls are very dangerous for older people. Do what you can to prevent them. With my aunt (who had a live-in cargiver) and then my mother (who was in a memory care facility), both recommended getting a hospital bed with bars that can lift up, so that she cannot get out of bed herself. Medicare/Medicaid pays for the bed. They call it durable medical equipment and you have to return it when it is no longer being used. Put the incontinence diapers on her at night and you can also get disposable pads to lay under her, in case of accidents (also good on chairs). Put a bell by her bedside, but then you risk not getting a good night's sleep. She may not be able to learn how to use the bell or new ways of doing things if she has dementia. If these approaches don't work, she may need an in-home caregiver at night to give you a break. Speak with a local social worker to find out what she is entitled to. Much will depend on her finances. Medicaid provides more than Medicare.
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Put a portable pot right next to the bed. Arrange it so all she has to do is sit up on side of bed, stand up and then turn around to sit on the potty. I would also arrange it so the back of potty chair is next to a wall or heavy dresser so that as she sits it cannot tilt back.

She won't have to walk any distance which makes her even more awake and harder to get back to sleep. This worked for my mother for a number of years.
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We set up a Blink camera facing my 93 year old dad (with Alzheimer’s) in bed. You can set up notifications. When he moves it makes a sound on my phone and I check to see if he is getting up. You can even set up zones so that if she just moved in bed it won’t set off the notification but when she sits up and starts to get up the notification alert you. This worked very well and actually kept me from having to get out of bed and check every time. We did also set up a camera for the hallway from his bedroom so if for some reason I don’t get the notification from the bed, I would get a notification if he started walking down the hall
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CissyR Nov 8, 2022
Yes! I use an Arlo camera. We first bought a Blink system, but it didn't work for us, just couldn't stay connected reliably who knows why. Their tech support certainly didn't. But anyway, I couldn't live without that camera to check on her.
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Get her a portable commode and put it close to the bed so she can use that instead of walking to the bathroom. I did that with both of my parents.

And by all means do not put her back in the hospital or rehab unless absolutely necessary. The elderly, especially ones with dementia do very poorly there and always come home worse than when they went in. My mother had hospital delirium and was making no sense with each passing day, but once home was back to normal.
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CissyR: Perhaps your mother requires residence in a managed care facility.
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HanaLee Nov 7, 2022
Worse place to put the elderly. They decline very rapidly in those places.
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Do you think your mom only gets up to use the bathroom or would she get up no matter what? I haven't read through the comments so don't know if anyone else may have suggested this, but you may want to look into the PureWick- it's an external catheter for women. If your mom only gets up to use the bathroom, this would help to keep her dry and in bed through the night.
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Another idea is you could just buy a commode and place it right next to her bed. They are not expensive either.
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HanaLee Nov 8, 2022
Exactly. I did that with my parents too, more for convenience for my father. He was taking meds that caused diarrhea so having it close by was helpful. Me emptying in the morning was gross, but I did it.
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When my father had dementia we installed a motion monitor that was aimed right at the bed, but at a level that if he sat up, the alarm would go off. The alarm was not in his room. It was a pager that you would keep near your bed. That way you can get decent sleep unless the alarm alerts (pager) you that your mother is getting up. It worked great. This was many years ago but I know Amazon carries these type of devices. My husband is bedridden and I use something similar. He has a button to push near his bed and I have the pager that goes off when he needs me. These things are not that much money. The one I have was about 35 bucks and works great. It goes the length of my one acre property. So through walls to the outside. Anyway, a motion monitor may be a good solution for you versus the baby monitor.
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Basic question - did you ask her why she is not using the walkers you provide??
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HanaLee Nov 7, 2022
She has dementia. Do you think she knows why she does it? Probably not.
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We ordered the Economycare+ Wireless Nurse call system from nationalcallsystems.com. They have an add-on Mat that can be put under the bed (or anywhere really) and pulled out when she goes to bed. The minute she puts her feet on it, it will alert you on the monitor. There are also chair mats and a bed mat, but I felt if she actually got up, it may be too late. The extra moments between her putting her feet on the floor and standing are important. The system also has a pager. My mom's caregiver can carry the pager with her if she goes downstairs or in another room so she is alerted right way and its easy to reset. The alerts are only audible on the monitor and pager, so it doesn't startle the person using. We put call buttons in the bathroom and on the wall next to her bed. A few hundred dollar investment, but eased our minds greatly. To us, priceless. We've also taken to toileting her every few hours during the day, essentially emptying her bladder, she hardly gets up at all overnight now.
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I had this issue with Mom falling in her bedroom at night when she went to the bathroom. One day I stood in her bedroom and visualized why. From her bed (a place to steady herself), she had an immediate long dresser to steady herself. Between the dresser and the doorway is where she would fall--I realized it was because she had no way to steady herself!

If she made it to the bedroom's door without falling, she had the door, door frame, narrow hallway, and the bathroom door to steady her.

I ended up putting up spare dining chairs with the backs facing the "walkway" in that open space. She always had something to steady herself in the night. She never fell again.
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This was me more than 2 years ago, and after countless nights staying up, listening to the floor creak, making sure it's not a thud, while she walked a short way to the bathroom. I have watched her for more than 10 years and I was exhausted. She just won't remember the walker either, even passed by the urinal we've placed close to her bed, which is already low so that she can get out of it without difficulty. Situations just kept getting worse and worse...she kept getting UTIs and just not being able to stand up, and she began eating less. There have been mornings, where, I guess exhausted after going to the bathroom several times that night, I would find her on the floor, wet in her own urine, unable to call for help. It was heartbreaking; I barely have any sleep myself, often coming down to check on her at night, to still wake up to this. It was the time of COVID too, so an aide was a problem. With the dementia getting worse, she had to be taken to the hospital 2 more times, then rehab. When the lockdown eased up, I applied for her to be moved to the nursing home. It's the most heartbreaking decision I have made, and I ask for forgiveness to my father for sending my mother to a nursing home every day. But I know they can take care of her better than me, as I was beginning to kill myself for trying so hard.

Please consider hiring an aide for evening duty to watch her. I don't think you will have the energy to do this for the long run, but even if you do, you will need to rest so that you can continue to take care of her. Just give yourself options and seek help, make sure you are always rested and ready to take on the challenges to take this on. I am sending you all the love.
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CissyR Nov 7, 2022
I'm sending you the love too! You did the best you could do for your mother and for a long time. That's all we can do, right?
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Love the idea of placing a portable potty near her bed. Alternatively, getting her up every few hours for a potty break may work but will tire you out. My mom HATED the need to use a walker. When I caught her not using it, she would go back to get it and then pull it behind her. LOL.
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I bought a bed alarm from Amazon. It's the best investment I've made.

I place it right below the pillow underneath a bed pad and when she lifts her shoulders off the bed, the monitor rings. I can get to her before she stands up and starts walking.

It's given me a little bit of freedom of movement.

https://www.amazon.com/gp/product/B07RCYD69T/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
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Agingcare8175 Nov 7, 2022
I bought a baby monitor and it has worked wonders for me, especially at night. I have no problem hearing my mother when she is in need of help.
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@CissyR, so wonderful that your mom has improved! This doesn't speak to the walker issue and you may already have thought of it but do make sure she has adequate lighting. My mom fell (really more like slid down) several times in the night getting in and out of bed to use the loo. No falls since we plugged in a motion-activated nightlight next to the bed. I felt stupid afterward for not having considered that that could be a factor! (She has a lamp on her nightstand but wasn't using it.)
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CissyR Nov 7, 2022
Yes! lighting is so important. Some of Mom's early worst falls happened because she was walking around the house turning off all the lights (her bedtime ritual, no walker of course) and was in the pitch dark. Darkness always increased her confusion and unsteadiness. We finally wised up and put little dark-activated nightlights all over the house, they stay on all night. Now that she's sleeping downstairs, we also put a couple of motion activated ones (really bright) near her bed so they come on when she gets up. Nothing is infallible, but I feel like every little thing we do will decrease the number of falls and keep her home with us that much longer.
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Care taking often reaches the point where the care taker needs to sleep in or near the same room as the person being cared for. As care needs incrrase, it is not always going to be as convenient as simply having the cared for person live in the same house. If you can not provide as much supervision as your mother needs in your own home, you may need to find her a care facility. The hospital will only accept her for specific treatments; they will not let her stay just for nighttime trips to the bathroom.
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I had three canes and kept them like - one by the bed, one in the bathroom, another in the hallway leading to the bathroom. They wandered around aimlessly for awhile till my mom got scared of the bathroom. Now she uses a commode in the living room in the night because it is safer. So that's just a quick fix if she'd be okay using one of those <3

I have no issue cleaning a commode tho. You just put some water in the bottom and it's all good. I don't want my mom trying to carry that and empty it - I put the lid in a visible spot near it and she will put the lid on it if she's made a movement with about 50% consistency. But I live in a small apt, she's in my living room, I'm always home, and no issue cleaning the bucket for me. I remind myself of the BS I put her through as a kid and I clean the poop. (helps we had a non-dysfunctional relationship)
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Reply to Caldinea
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Had another idea, in case u don't have enough already..
Do a search on bed rails for seniors... Would that stop her from getting out of bed and use the external catheter instead.

This is kind of getting expensive with no certain return on investment... But it's another idea.
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I want to thank everyone for all of your fantastic suggestions. They are so helpful, and it also just helps to know others have been in the same boat :-)
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againx100 Nov 4, 2022
For worries about her trying to get upstairs, put up a baby gate.

I wonder if the covers I have to baby proof doors so my grandkids can't get in to rooms that aren't babyproofed would work on your front door? It's pretty unlikely that she could figure it out.

I'm trying to envision these walkers around her bed and wondering if they're creating an issue with her being able to trip on them? I've started parking my mom's walker halfway in her way so she can't exit her room without basically walking into it. But luckily, I get to sleep at night and then this great plan flies out the window.

Is mom good with using her walker during the day? Mine forgets here and there so me and the caregivers are often reminding her to grab it.

Personally, a commode is a showstopper for me. I have NO desire to deal with that. Who's going to empty and clean it? Obviously not our moms.

I feel bad about your lack of sleep. It's not healthy for you. Maybe hire someone for a night off at least once of twice a week so YOU can sleep.
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Check with doc..
Azo bladder control..
Reduces urge to go to bathroom during night.. I have multiple sclerosis and incontinence is a big one for that disease. I tell u things that have helped me.. Azo BLADDER CONTROL. Has to be the bladder control not any other type..
There many Azo for all kinds of urinary issues. The others don't work only bladder control.
Not. Bladder health, uti pain, prevent utii..
Only. Bladder Control.
1 store in my area carries the bladder control Azo.. formerly prescription med made over the counter. I get Walmart if they stop carrying will need to get from Amazon.
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CissyR Nov 4, 2022
I've never heard of Azo Bladder Control but Googled it and it sounds promising. Will check with her doctor.
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Purewick system external catheter. $399. I post this instead of message to get any experience says reduce nighttime trip to bathroom. 91 % of care givers would recommend.
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CissyR Nov 4, 2022
Hey, they used Purewick or something like it, on her when she was in the hospital. It just kind of soaked everything up and sent it to a bag, with no pain for her. She kept pulling at it and saying she needed to get to the bathroom. But that was when she was having some delirium in the hospital. I didn't know you could get that for use at home!
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Yes, a baby alarm or bed alarm could alert you earlier, enabling you to assist MIL quicker, reducing MIL's fall risk. Falls reduction is important.

But.
So is quality sleep.

Keep the alarm as a short term measure as you work on a longer more sustainable plan.
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CissyR Nov 4, 2022
I got one of those motion detectors and put it under her bed, and it alerts me with a loud beep if she gets up. Have only been using it 2 or 3 nights, but it has enabled me to get right down there and help her. I've been able to stop using that baby monitor where there were a lot of unidentifiable sounds which I had to keep checking--that seemed to disturb my sleep more, I was always on the alert. Now at least I can sleep until I hear that beep and I KNOW she's getting out of bed. You're right, I don't think it's a long term solution. Can't see having to wake up 2 or 3 times every night from now on!
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Put a commode next to the bed and instruct here to use that at night.. there is a company that does make covers for commodes if high visibility down stairs.. take cover off before night so it's easy to use... Hopefully the time to void will not cause her to wake enough to go sit in a chair elsewhere.. or put a lounge chair by the bed.... Actually sore muscles and arthritis may make it easier at times to fall asleep sitting and sometimes fall asleep laying down.. discomfort may be making her move at night... Actually it's really tough to understand u can't sleep cause ur body not comfortable....
I have no experience with it but I see the commercials for elderly female bed-wetters that soaks up the urine so bed not wet. That looked interesting, I'll see if I can find and message u with it.
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You're at the point where the situation is almost unsustainable. You're putting a terrible strain on yourself by thinking that you have to solve this problem. You do - but in a way that saves your health and sanity. Looks like you're super resourceful, but some day you'll probably wake up and decide you can't do this anymore. Start looking at options - caregivers, care home, whatever. She needs to be safe, and your home may not be the best place for that.
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Isthisrealyreal: Great idea! I think my camera has motion detection, but I've always kept it off because it wants to shine a spotlight and siren when it senses motion. But I'm going to look into it more, see if there's a way to just have the notification.
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Isthisrealyreal Oct 30, 2022
My security cameras do the same thing. Great deterrent but, not good in a bedroom. :-)
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Would she use a bedside commode?
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CissyR Oct 30, 2022
She might, although I'm not sure I want it as it would be in the living room on carpet. But willing to give it a try!
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Cissy, you can get a baby monitor camera with motion detection and two-way talk for 50 bucks. Oh, and night vision that is so good I have actually checked to see if my outside lights are on.

Point this wherever you need to so it tells you she is getting up. Don't aim it where it will pickup every move.

This will help you get sleep when she doesn't need to be checked on.

We use one and it is the best money we have spent. I get an alarm that motion has been detected, I can then go live and speak with the person. Or I can set off an alarm to scare critters away.

If it doesn't scare mom you could use it to remind her to use her walker.

It is a Zumimall brand and is rechargeable and wireless.
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What happens when mom wanders out the front door at 3am and you can't hear that happen? Do you have locks installed on the exterior doors high up enough so that she cannot get out? Most people don't really understand what all is involved with dementia, and how much trouble these elders can truly get into when living at home and left unattended. You can't stay up all night looking after the woman either, b/c that's not reasonable.

My father refused to use his walker (no dementia involved) and fell one morning at 4 am and broke his hip. He never walked again, for the most part, and passed away 10 months later after I had to get he and mom into Assisted Living stat. There is nothing you can do to force an elder with dementia to use a walker or to prevent her from falling, either.

My mother lived in a wonderful Memory Care Assisted Living residence for almost 3 years, and a regular AL before that for 4 years, and fell a total of 95x. NINETY FIVE times. And the AL and MC did everything in their power to prevent it, but in reality, nothing WILL prevent an elder from falling, especially when dementia is involved.

When hospice came on board for mom, they brought her a bolster pillow for her hospital bed which sort of cupped her body inside of it and prevented her from getting up. Here's a link to something like what I'm speaking of:

https://www.amazon.com/Drive-Medical-Universal-Mattress-Perimeter/dp/B00V86G39C/ref=sr_1_2?crid=3M4BQ5LI83ZRG&keywords=medical+supply+bolster+device+to+prevent+falls+out+of+bed&qid=1667150918&sprefix=medical+supply+bolster+device+to+prevent+falls+out+of+bed%2Caps%2C199&sr=8-2&ufe=app_do%3Aamzn1.fos.f5122f16-c3e8-4386-bf32-63e904010ad0

Sometimes a loved one's care becomes too much for you to handle alone at home. If/when that happens, look into hiring overnight caregivers for your mom (on her dime, of course) or placing her in a Memory Care ALF for her own safety, and so that you can sleep.

Best of luck.
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CissyR Oct 30, 2022
lealonnie, that is a good point about the doors. We've never worried about it before, but she is getting more unpredictable and who's to say she won't try to go out. One of the doors leads to the porch and has a key-locked deadbolt. We long ago started hiding that key from her, because in better times she'd go around and lock all the doors at night, and lose that key (usually it was in her pocket). So that door I feel is safe. But the other door she could open if she wanted to.

Another thing I worry about is if she decided to climb the stairs. She can no longer make them, which is why she now sleeps downstairs in a hospital bed. But I can imagine her forgetting she can't make it up the stairs and giving it a try.

I like the bolster pillow idea, it's a lot more humane than my idea of duct taping her to the bed, lol.
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No doubt like many of us she has been half wakening and stumbling to the bathroom during the night for years (if not decades), even if she wants to remember in the middle of the night routine memory is going to take over. I did what I could to make the pathway smooth for my mother, I even placed the walker in her way so she had to move it to get by (which she did - I've no doubt she would have bypassed a commode as well) but nothing really fixed the problem. I spent about a year sleeping on the couch so I was able to jump up and give her the walker, at least for the return trip. When that got old I new it was time to make a change and we moved to a more accessible home.. oh I still had to get up in the night there but at least I got to sleep in a bed!
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CissyR Oct 30, 2022
cwillie, I thought about lining up the walkers from bed to bathroom so she'd at least have something to hold on to. Would need a couple more, though, and she probably would just hug the wall instead, like she does.

A year of sleeping on the couch sounds awful, I'm sorry you had to do that!
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You can start by putting a portable commode next to her bed to try to eliminate her reason for going farther. If you cannot get her to use this, then you will need to think about how to keep her from wandering at night. Start with trying a commode.
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CissyR Oct 30, 2022
Geaton, that's a good idea, will look into that!
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