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Mom has progressive dementia and has declined so fast in the last 4 months. She is up and down all night long. I have to climb stairs because our bedroom is on the second floor. I went up and down those dang stairs last night 10 times. I am totally exhausted. Does anyone have any other method to keep her from waking up and walking at night. She has fallen 6 times in the 4 months she has been here. I am so afraid she will fall and break something. I don't know how she hasn't injured herself already. And to tell you the truth she is wearing me out. help?

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mzdaisy, if your Mom hs declined in the past four months I dont know if you realize what a change in environment will do to her, she will be more than confused when she comes home again so beware. I was offered that when I had Hospice also but I didnt do it. They told me everyone wants someone to come to their home for a week instead but they wont do that, figures! Seriously think about asking for depakote, it worked for my Mom and also cutting the door in half so she cant fall down those stairs. Good luck, I know your pain as I went thru it for a year with Mom also.
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Man, Msdaizy! Your mom and my mom must be related! I have a 95 yr old energizer bunny. It amazes me how the brain works. I can remember a few yrs ago when mom had a terrible fall. (Like your mom she has never broken a bone, and the drs. are amazed...must have been her cow Bessies milk!!) Mom was in severe pain after her fall. She was bruised terribly, and just getting her in and out of her chair to her bed was a major ordeal. She would squeal in pain. Yet, one night I heard noises so I ran downstairs to check on mom. Mind you, we have 7 steps, a landing, then another 7 steps that separate us. Mom was already up to the first landing talking to me in her sleep!!! I had to very calmly lead her back down the stairs without scaring her then got her back to bed. How in the world are they able to get up and sleep walk without pain? Yesterday when she was home for a visit, I ran upstairs to get some hangers (I was doing laundry), and no sooner did I leave her, she got up and walked herself to the bathroom. I want so badly to bring her home, but I know my situation will be like yours is (again). I am so torn. She is scared at the nursing home because she fears them. WIth me, she has not fear, but because of that she doesn't listen to me, no matter how much as beg her to. Oh, how I wish this wasn't happening!!!!
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Yep, got that too. The camera with monitor set up in mom's room. I hear her every time she gets up out of bed. Because mom has this sound when she is trying to do something she if finding hard to do. Its almost caveman-like sound. uh uh uh uh. So that is my little alarm clock. One night after several trips down the stairs and back I must have zonked out. Because when my husband was getting up to go to work at 3am he says.."hey? where's your mom? She's not in the bed?" I was so tired I slept through it. I flew down the stairs as fast as I could and found her sitting on the floor...just giggling. She's 91 it baffles me that she has not ever broken a bone. Last night I went up and down those stairs 12 times.
I also have one of the clips you place on her clothing and when she sits up it sets it off. It's very loud and annoying. I don't use it. None of those things will stop my little mom. She is so hard of hearing it wouldn't matter at all to her. But the rest of my family will not like it at all.
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It would be helpful to get a baby monitor with video, you put the camera in her room and the monitor in your room. Place the camera where you can view her as she is in bed, if you turn the volume up you can also hear her. There is also a monitor pad you can place in her bed, ( I forgot the name, but you can google for name ). The pad is placed on her sheet under her, when she get up off the pad it will make a sound and keep making it until you come turn it off. Keep the device that make the sound far away from her so she cannot turn it off.
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Thank you Nanfranp...I remember your post. We do have a hospital bed for mom. She has been in it since she came home from Hospice House the first week in November. Side rails and all. But that doesn't keep mom from trying to get out of bed. She has been taken off all her meds. Blood pressure, hydrochlorothiazide, and is only on meds for comfort and care. She was on trazadone and ambiem but that made it worst. She would still try and get up but was almost drugged into a stooper. Couldn't stand up straight.
She is my little energizer bunny. I pray for you to get rest too. My respite is so close..and I am so looking forward to it. Hugs to you also..we caregivers need to stick together. Bless you.
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msdaizy, I'm the poster who suggested a hospital bed, and would still like to encourage you to consider it, especially if you're with Hospice (which I believe you said you are). I requested one for my 92 year old husband with Alzheimer's, after I'd gone several nights with almost no sleep and had ended up in Urgent Care with the heart doing funny things. The bed was delivered next day and I haven't looked back. What a relief it is to tuck him in at night, reminding him that the side rails are to keep him safe, and then be able to go to bed in another room knowing that he will not be getting up and shuffling through the house all night, with every light blazing. I can't tell you how grateful I am for that hospital bed! I accepted the Hospice five-day respite too, and although I almost chickened out at the last minute (the thought of sending him off without me for five days brought me to tears) those five days were restorative on several levels. I believe that I, like you, qualify for another five-day respite the first of the year, and although I'll probably postpone it for a little while, I won't hesitate to let him go again when I feel the need. I will be thinking of you during your five days of respite, praying that it will give you the rest you need, and the fresh perspective that comes from taking that break. Hugs to you!
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Well darn it all...last night back to the same ole same ole. I think she was up at least 12 times each time having to go to the bathroom. 3 messes...the rest little tinkling. I wish there was some miracle drug that they give that would put her to sleep and still make her able to move. The advil did work for the past 2 nights but I think its the bowel problem that kept getting her up last night. ((sigh)) I'm still here..and I think my body is starting to adjust to little to no sleep. Just looking forward to the first of the year..respite for 5 days! Thanks for your hope. I still haven't thrown in the towel yet. God Bless.
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I hope it lasts for the two of you, also, Msdaizy.
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Well 2 nights in a row..got sleep. I really am amazed that she is doing so well...Almost scared to write about it because it my jinx things for me. But so far with only the haloperidol drops and one advil pm mom has slept well through the night with waking up only once or twice to use the bathroom. She wakes up with a smile and not stumbling all over the place. She is trusting me more now. Oh how I hope this lasts...Because it has made a world of difference in her.
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Well, last night I decided to go against all Dr. prescribed meds except the Haloperidol. I only gave her one advil pm and the Haloperidol drops(anti phsyc med) and she slept all night woke up to potty one time and slept some more. She just woke up at 11am. Plus she had a smile on her face for me. :)
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Msdaizy, my heart goes out to you! I I totally understand. My mom has to be in the NH right now because of my breakdown. My family thinks I am still to fragile to care for mom 24/7. I know she is being cared for at the NH but I can assure you that my mom is not forgotten. I am there every day (only time I was unable to be there was having a chest infection last week), but I still called the NH several times a day. They all know me know because I really think I'm one of only a few that faithffully visit. I still have a goal of bringing my mom back home. That's the only way I can continue this journey. I am able to be with my mom, hold her, rub her hands, hug her, you name it. It took alot for me to accept this is the right decision. Thank goodness for this site, and cousins of mine who know how much and how long (lived with me 32 yrs) I've cared for my mom. They have assured me I'm doing the right thing. They've been through it. My aunt had ALZ and her two daughters cared for her at home to the end, but they had each other. They really did it 50/50 which allowed them to still care for their own families. I don't have that luxury. My sibling is of no help. Only now she is visitng mom. Guess it shook her up when I had my breakdown, she's afraid shel'll be "stuck" with my mom. Mom always told me when she had her right mind, to please never send her to my sister's house. She would say "if anything every happens to you, I'd rather be in a nursing home". All I can do is continue therapy, and get my mental health back to what it should be. In the meantime, I continue to see my mom and take care of her. I'm probably giving her better care now, because I'm not so exhausted. She has made 2 friends (she was never really an outsider/social type of person, she had me (and family). I'm thankful for that because when I leave (which is ususally just before her dinner), she knows she is going to be in the dining room with her friends. Hang in there. You are doing the best for her, and I can tell by the type of loving daughter you are, you will continue to do what's best for her.
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Msdazy, I went through the same thing with my 95 yr old mom. I so badly did not want to put her in a nursing home, but it had to be done. I'm still adjusting (3 months now) and this site has been a wonderful place for me to come. My mom was very hard working and took care of herself pretty much until 3 months ago. That's when the dementia "hit" with a vengence. It was diagnosed as Lewy Body Dementia. Have they diagnosed your mom with any specific typ of dementia? The reason I ask is nIghmares and living out their dreams/nighmares is one of the sypmtoms in LBD. Mom's demential has progressed very quickly too. (another symptom of LBD). Even tho this was the hardest desicion I had to make, putting her in the nursing home, I can see it was the wise thing. The loss of sleep and exhaustion will eventually catch up to you. It did to me, and a breakdown is not a nice thing to go through, believe me. I never thought it could happen to me, I'm 56, healthy and thought I had it so together. But full time caregiveing can do it, especially it you don't have help. If mom is able to go to a senior day center perhaps you can find out what she qualifys for in your state. I know some places also arrange for pick up services. My mom was so tired at home the last few months before the NH. I really thought she was going to just fall asleep in her chair one day and not wake up. Now that she has been at the NH, even tho the dementia has progressed, her overall health has improved! They have her in therapy and exerciise every day. She is no longer on H2O, and her shoulders don't seem to hurt her as much as they did. Plus, the exercise does help the dementia. She still has good days. Take care of yourself and keep in touch.
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Msdaizy I agree with you, my mom will never go into a nursing home either, she was the best sweetest mom ever to me. Nursing homes give less care than us at home by far, full of infectious diseases, aides that have 7 other patients and they dont give them the time and the love like we do They will medicate her to sleep anyway so you may as well do it at your home. I love to just hold Moms hand or rub her back or face to let her know I am here and she is safe and loved. Seriously, try the depakote, its fabulous stuff if her dr will prescribe. Hang in there xxoo
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Thank you for that. I know how you feel. My mom keeps talking about people coming to pick her up. I ask who? ..and she tells me her brother and sister, mom and dad. She is the last of her clan. I hate this dang disease. I don't want her to go through years of this. Nor do I want to be doing this for very long. I have been granted by all my siblings to do what I need to do. But it's so hard to see her face and know this is my momma. I don't want her to suffer in a nursing home where she will be come one of the many..and forgotten about. I will plug away as long as I can..or until my body gives out. She doesn't deserve this ...she was such a sweet soul all of her life. I just want whats best for her.
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I know what you are going through also. While my mother doesn't ramble at night and so far sleeps fairly well, she wears me out during the times I am not working. I have been dealing with her disease for over a year. She isn't getting any better and I can tell she is declining. I, too, can't bring myself to place her in a personal care home. If the situation were reversed she would take care of me as long as possible. I have a sitter that stays with her while I work. I get little help from my brother who says mama makes him nervous. Welcome to my world 24/7! Most of the time she doesn't know me and keeps asking where everyone is. When she looks at me she sees one of 5 different people. Sometimes she thinks the house is full of people waiting to beat her up while it is only she and I here. She becomes frightened and runs away. She has called the police on me. As long as she doesn't become fearful and run, I can keep up the pace because I am not willing to make the placement choice. I can offer no solution but to pray for strength for you and all of us in the same role.
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Gerontologist, i do agree with you on several points. I do think the lorazepam has an opposite affect on mom when given in a dosage higher than .5mg They tell me to give her 4 of those at a time. I didn't like doing that...it made her obstinant and mean she almost kicked me in the face one night when I was putting a pillow under her knees. So those are not part of my regiman anymore. The trazadone and ambiem seem to work a little and she is somewhat groggy..but not dead drunk like the other made her. She gets up to use the potty because she has a water pill during the day. Don't ask me why? Because she has a strong heart although they have her on high blood pressure meds. But I monitor her pressure all day long and it's not bad. When it isn't bad I don't give her the medication for it. The Hospice nurse tells me that lots of caregivers of Dementia stop the meds that are life sustaining and go with just the comfort and care meds. That's where I am currently ...starting to watch her go off the meds that are life sustaining and working only with ones that comfort her. So far I have seen a big change in her demeanor. She is more like my sweet mom. I know she has a lot of anxiety about wetting in her pants. And I am sure it does keep her up at night.
The new adjustments in meds are giving me a little hope. I am still hanging on to her...not ready to give up yet. I love my sweet mom...and I don't want her to suffer I have mourned the mom I knew..i just hope and pray she goes peacefully in her sleep.
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Oh, dear cyber friend, we are all experiencing pure hell with this horrible disease. I bought a baby alarm set so I would hear my husband get up. The problem is that it worked so well that I heard every turn he made in bed, cough, murmmer etc.. I had care givers then round the clock staying and dozing in his room while I slept alone in another. After falling numerous times, the doctor sent him to a nursing home. The doctor was worried about me. (Caregivers frequently pass away before the patient.) My husband has been well cared for in the nursing home. Now, he is in the final stage of dementia and I am anxious to have him at peace. I have hospice for him and they are wonderful. Know that you are doing the best that you can and your mom is, also. Tell her that. You must feel no guilt! God bless you. Hugs, Corinne
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A couple of things come to mind. Most people getting up in the night do so because of bladder urges. For older women who are mothers, remember each pregnancy weakened her bladder, so she may be getting up to go to the bathroom. Monitoring her fluid intake in the evening and before bed might be helpful. She has to have plenty of liquids during the day to ensure her health and avoid UTIs, but fluids late in the evening can increase her nighttime activity.
Be certain to toilet her before bed and even 30 minutes or so after she lies down.
Also make certain she's not getting caffeine as it has a dramatic impact on persons with dementia.
Some people have luck with a person who is getting up frequently by using a body pillow. This works because many persons from your mom's generation are accustomed to sleeping with someone. As a child it might have been a sister, as an adult it was her husband. The body pillow gives her something to wrap around and can make the nighttime more comfortable for her.
You also mention some pretty intense medications. Many of these medications have the opposite effect of older persons and on persons with dementia. They would make you or me sleepy, but can actually stimulate her. Your mother may also be taking medication for insomnia, when the issue might be depression or anxiety. Make certain her physician is treating the causation of her behavior.
You mention your mother's dementia is advanced. Persons in stage five or six can experience a flip-flop of their nocturnal clock and actually become more active in the night. Physical activity may help, but remember the times for activity are around 10 am and 2 pm. (Intense activity after 3 pm can increase Sundowning.)
I would avoid bed rails or padding on the floor. Bed rails are dangerous to persons with dementia because they can become tangled in them, in some cases actually strangling themselves. Floor padding or mattresses are used after a person is no longer walking, but may be rolling out of bed. The mattress protects the person from hitting the floor.
Unfortunately falls are a part of dementia. As the disease progresses in the brain, it affects the areas responsible for coordinated movement. This is called apraxia and it involves any skilled movement -- from walking to balancing to toileting to chewing and swallowing food.
Good luck with your mom and enjoy your respite.
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Thanks everyone for your wonderful advice. I will keep it all in mind. My mom is 91 years young and has 2 arthritic knees, macular degeneration and frozen shoulders...this makes everything more difficult. I believe she is in the latter stages of the disease and we are experiencing what they call "surges" but I can't be sure. I have never dealt with dementia before this. She has hospice and we do have a hospital bed with rails, alarms, gate belt and other medical equipment to help her. But some things she still refuses to use. I don't have the energy to fight with her on some things, so she tires herself out through walking. I offer her easier solutions all the time. But she is determined to have it her way...until she exhausts herself and asks for help. Then I oblige her.
She is also under medications to help her sleep at night, trazodone, ambiem, lorazepam, haliperidol, but she defies the odds and still makes attempts to get herself up. My bedroom is upstairs and I have a camera/monitor to keep tabs on her...course I panic when she is out of camera range so I stumble out of bed and shoot downstairs. This happens many times a night.
They have re-adjusted her meds again..and the last two nights it was only every two hours and one four hour stretch of sleep.
The light at the end of the tunnel for me is the 5 days of respite at the Hospice House in the first week of January. And now we will be receiving homecare help up to 20 hours a month through the Area Agency of Aging and Disabilities funded by the State of WA.
I really don't want to do the Nursing home...but if I can't give her the quality of care she deserves due to illness or sleep deprivation. It might be necessary.
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msdaizy Is she in search of something? Is she just restless? When they are like this you can get a device (not sure what it is called) it is flat and goes under sheets under the body, it sounds an alarm when the weight of the body isn't on it. My Mom's first nights at the NH, she was scared stiff literally to move because the alarm would sound. She even showed me why she couldn't move... she moved... it went off.... she'd lay flat down it stopped. She was an experienced escapee/wanderer too, this worked until she figured out how to disassemble the power source. Nothing kept her from harm that's why she's in a NH now. I just didn't have enough eyes, ears, energy, arms, legs, etc. This may be a stage but the next stage may be more hazardous. One night she was in a lake, she thought it was a huge puddle, thank the lord the neighbor had a dog that warned him, my Mom was in the lake. I was sleeping in bed with her in fear she was on a mission that night, she waited till I was in lala land and took off out the window. I tried my best to keep her safe.
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I like Reverseroles' answers and attitude. After all we have to laugh with all of this stuff or go crazy! The bed on the floor isn't a bad idea at all. Also you can buy the floor pads similar to the ones they use in a gym class or in preschools. They are soft and take up a whole floor so there would be no tripping. I also think the idea of keeping her busy and get her worn out at the end of the day is a great one. We all sleep better after being busy and mental stimulation for the elderly is usually lacking, getting lost in the day to day care of it all. Also, FYI, a neighbor of mine had her mother with her for years before she recently passed at 92. During about a four year stretch, her mother had enough going on to qualify to be in hospice care, which was hugely supportive. Constant UTI's can be enough to admit them. Might check with hospice locally and see what can be done. Most of us think of it in terms of the 'very end' but really, not so. Dying is a process and being very old is one 'symptom'. In my friend's mother's case, she was admitted and released several times. Also, she was, as a function of the hospice care, admitted to nursing homes several times. A wonderful byproduct of that was while she was being cared for in a place where they were equipped to do so, she had an 'incentive' to do better and get back to her daughter's home. My friend could never bring herself to 'stick' her mother in a nursing home (what a saint, she was suffering from lupus, was undergoing chemo for breast cancer and also has a teenaged daughter while caring for her mother, who was somewhat a diva though fragile) but when her night wanderings, UTI's and other health issues got worse, she needed the nursing home. When a crisis passed, both mother and daughter had been refreshed and could live in the same house again. Her mother died at home and was well cared for.
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P.S. I also hung bells on the side of her bed so I could hear her getting up and put a chair next to the bed with bells hanging on yarn. But, it doesnt stop you from not having to get up, you just know they are up so if they are safe in their room, you are okay. You can buy a baby monitor and watch her if you want also. Good Luck
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Msdaizy, I feel for you, I went through it for a year with my Mom in my home until she went on depakote sprinkles. Please talk to her doctor about putting her on them, they are safer than antipsychotic medications and dont make them unsteady and constipated with things like sedatives. Do you remember the show Mr Ed? Lol. well we cut the bedroom door like that horse had, in half and locked it on the outside hallway area. She would get up and come to the door and say HI? all night long, I told her it was the middle of the night and to go back in bed, 10 mins later she got up again, on and on and on. But, she was safe. her room was safety proof by us and she had a few clothes she could play with and a small lightweight burea she would go thru and play with the stuff in them. Hospital beds with rails are now not allowed in our state as they climb then and fall over them. What they do here is lower the bed and put a pad on the floor like a gym thick pad. If you ask me its dangerous also because they can trip on it. You could put your Moms bed right on the floor. Take care and know this too will pass, its just a phase.
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Bed rails work wonders. They seem to work psychologically as well as physically.
My 89 year old husband with Alzheimer's used to wander incessantly but since we installed the rails he hasn't even trIed getting out. You don't need a hospital bed either. We use home style bed rails that work on any size bed. It's worth a try.
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Try chamomille tea with a bit of raw honey before going to bed. Also Rescue Remedy is good to relax the body. Consider temporary stays in a nursing home for your sake. SK
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I feel for you msdaizy! My 92 year old husband with Alzheimer's was doing the same thing, and I got to the point of exhaustion from being up ad down most nights. Since we are now with in-home Hospice, I requested a hospital bed, hoping that the adjustable sides would keep him from getting up, knowing that he is too frail to try climbing over the sides. We have had the bed for a week now, and it's been wonderful to tuck him in at night, with an Alprazolam pill in his system, pull up the hospital bed side rails to the highest position, and know that he will stay put all night. This has given me great peace of mind, since he, like your mother, falls frequently. I remind him every night that the rails are to keep him safe from falling out of bed, and he has accepted this surprisingly well. In fact, I think that the sight of the side rails might even be helping him to feel more secure and less restless through the night. Even if you are not with Hospice, if you can afford to rent a hospital bed this might be the best thing you can do for your mother and for yourself. I send an understanding hug to you. Please keep us posted on progress!
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The best thing I have found for my mom is for her to have an active and busy day. I take her to a day program that has activities and socialization which she enjoys, though it is a bit stressful getting her out of the house in the morning. She doesn't remember that she has participated in the program at all, which has been over a year now. But once there she enjoys the activities and the friendships she is developing, even if they are new to her each day:) Because she is busy, she sleeps much better at night, and a much more restful sleep. On days that she is home, she mostly sits in her easy chair, reading, or talking which is constant because of the repetition.
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The truth is this is the hardest pivot point. There are no good answers for your mom.

But you are killing yourself. The stress will take its toll. We are not taught as women to think of ourselves as much as others. But let me ask you this: What will happen to your beloved mother and your children when YOU wind up in the hospital? or lose your job because you are a wreck?

When I was in your position about five years into caregiving my mother, I called the doctor and she said " Wait until the next time she falls. We will transition her then to the assisted living" But you have to have the cash.

There is a bed pad that has an alarm attached to it that goes off when someone get up - about $400 bucks. But they don't work very well according to a recent hospital study because someone has to intervene with your mother.

How about you rotate your kids to sleep in your Mother's room at night? Get another bed, so she has to climb over your kid to get out. It will wake up your child, so the child can stop grandma and won't hurt grandma with a fall.

Just an idea. We need to be creative with the resources at hand. I was alone when caring for my mother.

You are a good daughter. Be good to yourself, too.
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Another comment about the sleep prescriptions. My 92 year old MIL is not allowed, by order of her doctor, to take ANYTHING other than mild OTC stuff, unless it will not make her sleepy or disoriented. Elderly folks have Sundowner's Syndrome and confusion and movement in the evening is typical. When you give them things that further disorient them, the liklihood that they will fall and break something is much greater. Be really careful with things that make her sleep. They can cause unwanted issues that you never knew of.
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I would agree that you find her a place where she can be that is equipped to manage dementia and her physical needs and then know in your heart you are doing the best thing for her. You have a family, I take it, and that has to come first now, but that doesn't mean you have to neglect your mom. Having you involved in her care, visiting her, being her advocate sounds like the best you could possibly do for her. If she does fall and break something, I am afraid you would suffer terrible guilt and she would have long term effects from the injury too. Truly, try to see through your own issues of guilt, talk to a pastor or someone who can help you emotionally, and then be there for your mom in a way that allows you to be there for yourself and others you love too. God bless.
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