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.

29 Comments

My mom is on Remeron and it has helped her rest, but as you probably know, it takes a while to get in her system. Unfortunately, mom was also put on Geodon which did cause her to be more confused, but I felt like I had to choose between more confused and calmer or less confused and agitated/not sleeping. Hope you find some answers here. Oh, mom is also on Klonipin which helps her rest. Blessings...Pat
I am afraid that AL may not be the place for her at this point and since AL is having problems with her it seems like it is the time to start looking at Nursing Homes. Start looking at all of them near you so you will be able to compare and ask for tours and talk to the social workers about starting applying for medicaide-they should help you with this-you might want to retain a good elder lawyer to assist you-she may have to spend down but they will be able to advise you. It is only a matter of time before the al facility will ask her to leave. You did your best for her and gave it a try but she just is not able to adjust to AL-which is true for most elders-it is a great place for those who are able to take advantage of the nice surroundings and activities.
I feel for you. My Mom is 85, dementia, chronic UTI's...this last one made her so weak Dr. said she must go to AL for rehab, but I don't think she will ever come out. She keeps having dreams of her Mother and Father and thinks that they are still around, it is like she can't get out of the dream. She has pretty lucid moments at times, but yesterday morning her dream left her all confused, crying, went and got her coat and insisted that she was leaving on a bus. Of course AL called me, when we got there she just cried and cried. This is so hard. She didn't eat all day yesterday, gave her food away.... we are trying to get her to do some activities there. My thoughts are with all of you.
To Claire33 my mothers ALL the same way and even worse! with the crying as well. Anyways to me what I have learned is most all what I have tried for medication for my mother just makes her worse in crying and MORE confused. All they want to do in an Assisted Living and any nursing home is med them all up with drugs what is (wrong) to me mixing and giving to many medication is (bad) all they ever want to give my mom and have put her on without my permission is Ativan to help her sleep and relax then some but that stuff is to strong and at its lowest dose it knocks her out for at least if not more than 8 to 10 hrs shes all doped up on it when i go see her. But I wont let them do that to her unless I think she really needs it. Hope this helped good luck to you.
I'm wondering if she still has a UTI. Was she tested clean before that the low dose of antibiotic was started? Her bacteria may be resistant. I believe in the saying from the Alzheimer's Association that 'all behavior is a cry for help." Sounds like your mom doesn't feel safe in her confusion. Did the AL allow you to bring in lots of stuff from her home so her room feels more homey? She's going to exhibit the same behavior at the NH, unless they do something to make her feel safe there. Some NH have a Memory Unit, but check it out carefully. My heart goes out to you in this tough situation.
not sure this would help but there are High-Low hospital beds. available from most durable medical equipment companies. They have a scoop mattress on them which somewhat cradles the person and makes it difficult for them to get up without help and when placed in its lowest position is only 6 inches from the floor. I would imagine someone else in the facility would have one. it is basically a full electric bed, modified to go very very low. comes back up at the touch of a button. there are no rails on these beds. good luck! another difficult thought is to contact your local Hospice. their input can be very helpful. she may not qualify but they are a wonderful resource and if she improve you can always discharge. it is part of her Medicare benefit.
I think you need a good internist or family doctor familar with her health. Moving from place to place the facility uses their own doctors on the patients and residents who don't know each person for an extended period of time. Often NH and ALF try too many drugs to get the client at peace but from their stand point someone who isn't ringing their bell for help. I suspect she may still have a UTI, has an urge to urinate and the staff isn't moving her to the bathroom. Most elderly do not want to wet the bed and as long as they can will try to get up to the bathroom. I think the staff isn't being responsive to her needs.

Don't feel you need to apologize to the staff. They should be with her and she should not be getting out of bed without their help at age 96. She is amazing to still have the ability to stand and walk at all. This ability is generally gone before this age.

I would get the meds checked, get her longtime doctor in charge or in consultation with the doctors at the ALF to get a plan that works for her. They should be able to make her feel more secure. If she feels secure some of the
behaviors will subside.

Put familiar things in her room so it looks like her old bedroom. My father kept his mind and enjoyed a digtal picture frame with the pictures of himself and my deceased mother and their lives. He loved seeing pictures of his parents too. It gave him comfort as he entered his 90's.

Finally if possible get family members to visit her regularly. The staff will be more responsive and even if she doesn't know all the family members their kindness will help your mother. I know people don't want to visit a family member with dementia but their brain will be helped by seeing family--it adds to their security. The visitor doesn't need to be acknowledged by your mother, it's your mother they need to help. I had to remind my friends of that fact.

You are doing a terrific job. Remember, you can not change everything and make it "right" for your mother. Her life has a course to run and at 96 she has been running a long race. Good for her. I know you are thankful for having her this Thanksgiving and somewhere she is thankful for having such a devoted daughter. I will pray for each of you.
Elizabeth
Have you tried Melatonin at night? My husband had the same symptoms and a high dosage of Melatonin (10mg or more) combined with a bed rail that keeps him in bed have been very effective. the bed rail seems to have had a positive psychological effect and he doesn't even try to wonder anymore.
My aunt at 92 has constant uti's. Almost every month or if we are lucky every other month. They should be more understanding of her behavior. Their behavior sucks. They are suppose to be compassionate and caring, and help figure this behavior out, not complain to the family and make them feel bad. I would be upset with this facility. The nursing home my mother is going too has a traditions unit. It is for aging with Alzheimer's and with dignity. They try to figure these things out, and ask if the family has any suggestions. Our friend has his wife there too. My mom responded better to Exelon (Rivastigmine) than to Aricept. I would look into another facility. I would follow the other advice on here and talk to the doctor. Also, we had some problems that were similar and found when we bought my mother a stuffed animal and a stuffed(like Raggedy Ann) doll this helped at night for her to feel not so alone and have something to hug and hang on to.
It won't help with the crying, but have you tried bed rails? Most hospital beds come with them, but if not, you can purchase them. It was an easy solution for my mother. I also handled her anxiety with a stuffed animal. She always loved them. Especially kitties for her. It would calm her down for quite a while. If she started to get anxious again, I would purchase her a different one. By the time she passed away quietly in her sleep, she was surrounded by a dozen or more of her favorite "kitties".

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