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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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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 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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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 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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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 2022
Geaton, that's a good idea, will look into that!
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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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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 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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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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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 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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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 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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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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