Mom is in assisted living and keeps getting out of bed at night. She gets on the floor and cries.

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Mother had a rapid onset of dementia a few months ago (UTI's, hospital stays & some meds I think). She went from last hospital stay to rehab at a NH and from there to an Assisted Living facility. She will be 96 this month, is in good health, but miserable, scared, has horrible anxiety, sundowning frequently and pretty much has all of the other attending symptoms that define dementia.

She does not sleep and continuously climbs out of bed and gets in the floor. I don't think she's falling per se, but 'in the floor' in any situation can't be tolerated by the AL -they could get fined by the State. Mom won't call for an aide until she's in the floor. I've asked why she wants in the floor and she told me she thinks it might keep her from having the constant urge to go to the bathroom which she feels most of the time when in bed. She is on a low dose antibiotic so she shouldn't have another UTI at this point. The other problem is that she became a crier at the NH. She would rarely press her button to call for assistance and figured out in her confused brain that the best way to attract attention and get someone to come was to cry (boo-hoo) loudly. At the AL this is not a good situation because she upsets the other residents. The nurses in charge have expressed their major dissatisfaction at having to deal with either one of these behaviors.

I have her in the 'Memory Care' (Dementia/Alzheimers) section of the AL. She gets much faster response by their staff and it is certainly a much more pleasant facility (nice rooms and no odors) that she would have at the NH. But I am at my wit's end to come up with anything to change these behaviors. She has been at the AL for 2 weeks today and last Friday I had to employ sitters (per the AL) to come in at night to stay with her -hopefully to make her feel more secure and help get her adjusted to the AL. Isn't working so far. We also got a med change to Remeron last Friday too that would hopefully help her sleep. Apparently that hasn't done much yet either. She takes a bp med (Coozar), Arricept and Lexapro. Xanax was causing her problems (tremors & more) and it was stopped last Friday.

Has anyone dealt with either of these? Got any suggestions? Don't tell me to get her put on Seroquel or other antipsychotic because they've been tried and I think put her deeper into her dementia.

Thanks for any advice.

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You may want to try something called D-MANNOSE POWDER. IT IS AWESOME. my mother is in AL dementia unit and the house dr recommended this for her frequent UTI's. and it has worked wonders!!! it is all natural and comes in a powder and also a pill form. TO my understanding it is a substance that keeps the bacteria from sticking to the lining where bacteria can form. It has been a miracle for us. and we were told that with these reoccurring UTI's they have to find the particular strand of infection before it can be cured I agree that the various medications do alter moods as they did in my mom. My mother just turned 82 and she is in AL with hospice assistance and I think you will be very pleased with this product. Feel free to go on line and research it.
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This is the first site where I found others dealing with the same issue however have not really searched. My mom entered Hospice a couple months before going to a NH. She also kept getting out of her hospital bed and trying to get to the wheelchair and falling most of the time. She began doing this at the NH resulting in several falls. The Hospice team followed her to the NH and I am so thankful for them. They are so experienced with these situations and have been a Godsend for me. Today the Hospice nurse told me that she had ordered a Scoop bed for my mother to see if this will work out better and also prescribing a low dose of Halodol due to her increased anxiety. It is very difficult to see her suffer so much mentally even though she has lots of visitors.
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Speak to the SALSA (The Director of Nursing) @ her A/L. She may do well with evening checks from the A/L aides in the eve. or she may need a private aide for overnight assist. The same Director can also contact your Mom's physician and discuss changes in meds or prescribing something for the evening.
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My MIL is on Aricept in the morning and Trazadone at night, and it is like night and day. Before the meds, she was way worse. It has been a miracle for her. I can't speak for everyone else, but it has made a difference with her.
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Claire. my Mom was on Aricept and they increased it after a year and she was crazy and aggitated! I thought to myself "what was the lower dose doing to her before this even? I cut her to every other day, then every 3rd day and so on and got her OFF it, she was better off it . That stuff can be bad news in my opinion. UTI's cause dementia behaviors, dont be surprised if they come and go, or do what I do and keep her on a preventative dose daily. Good Luck!
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Claire:
I am glad your mother is improving. The doctors who have helped her and have them make the call on her meds. Report directly to the doctors how she is doing, insist on a phone # to reach them 24/7 if she has problems during the night. My dad's internist would call me back during the night if I was concerned
about how he was doing. If the parent has confidence that the doctor knows what he/she is doing your mother's anxiety level will lower--not to mention your worry level as a caring child/caregiver. Your mother is in her 90's she deserves the best care we as a nation can give her to make her remaining yrs as pleasant as ever.

Hang in there, your mother has much to be grateful for this Thanksgiving--you.
Happy Thanksgiving.

Elizabeth
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My mother was on Aricept and hated taking it. So she just stopped. She seemed to do fine. Then months after that she started taking Excelon capsules and they seem to really make a difference. I never noticed any difference with Aricept.
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You all are wonderful! Thank you so much for your input & help. Taking mom off of Xanax has helped a lot! She has just recently become more alert and much less like a zombie during the day. She was even walking so much better yesterday -last week she was practically bent over double & could not raise her head. We had an appt yesterday finally with a gerontologist & psych dr who is supposed to be good (his book had been closed previously & we couldn't get in). To my surprise mom tested 26 out of 30 on her mental eval yesterday. He said she has mild dementia! Boy, if he could have seen the mental & physical we have been dealing with for months now... She could not have done that well last week, she was so out of it. He said Xanax should not be given to dementia patients. After I described her night behavior, insomnia & horrible confusion on waking he said the Aricept was probably causing it and changed it to morning instead of bedtime. AL still gave it to her last night (said they would start the new schedule in the morning :( and the night sitter just phoned to tell me she was just wild all night. I am about to go over and check on her today, but I am seriously thinking about discontinuing the Aricept period. I've wondered previously if it wasn't also a culprit, but she's been on so much that each have so many side effects it's hard to tell what's doing what.

The doctor also said he thinks she has Parkinson's (her GP also thought it might be, but then decided it wasn't). If she's got Parkinson's and only mild dementia (she had mild dementia before the UTI's began), then that means to me most of her mental (severe confusion & other), physical and behavioral may be caused by the medications they've been shoving into her & switching around? Poor little mom, I am amazed she has survived. It's all so horrible and hateful that after months we still have no answers and mom is having to suffer being a guinea pig for their guesses.

I've read conflicting info on discontinuing Aricept abruptly. Anyone had any experience with it? She was started on it in June.
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Claire, I can't answer the medical issues but here are some things that worked for my Mom and her bed climbing incidents. First of all they ordered (Medicare paid) a mat that is placed next to the bed should the resident fall out while trying to climb out. Still, that didn't work,only kept her from a bruise/break. But here is the thing that DID work! They asked me to bring a full length body pillow over. They placed the bed against the wall and when she gets into bed, they put the body pillow next to here and tuck it in with a folded sheet. Voila! No incidents since, (over 6 months now). And despite other's objections, some ALs are exactly for our Mom's. Mine is in a wheel chair and on hospice. The AL checks on EACH resident Every hour, 24 hours a day. AND they know how to handle dementia residents. I hope this idea helps. Keep us posted.
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She may also be scared n upset due to she is in a new environment n not at home. If she don't have UTI n she is not able to walk without assistance I would suggest what Austin mention about a NH. You can also find some Assistant Livings that r conjoined to a Alzheimer's unit like Debparkhurst mention she done. You will have to do the work to check out their ratings for their r a few out their that are good n safe places just as there some that r not. When u find a place, I would see if you can bring like photos or something of her's that would might help make her room help her feel a little more comforting. In addition, you have to remember that you r only one person n human n u can only do so much. Good luck n keep us posted on how your mom is doing n you too.
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