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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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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
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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.
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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.
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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.
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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.
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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.
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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
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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.
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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.
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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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An Al should know that with patients with Dementia or Alzheimer's that they forget how to use buttons. It just irritates me that they don't check on her. Most places I have been with a Memory Care unit check constantly on their patients because they realize this. They need to hire new nurses if these express their dissatisfaction with something that would be normal to see in a patient with her conditions. I have never been to a place where they would do this to the family.
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I think your instints are right. Hospitals, nursing homes, UTIs and drugs are all bad for people with dementia and will send them down a slippery slope. Seroquel--forget it. The FDA does not approve it for dementia and warns against its use. Doctors who prescribe it should have their licenses revoked, but our system is too lenient. Women with dementia often have to be cleaned thoroughly after defecating to prevent UTIs. The institutions and drugs that worsened the dementia are not going to fix it. Forget drugs. Nutrition, exercise and a supportive environment may help, as they did for my mom, but results may come one step at a time over a few months.
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Claire33,
I actually can relate to what you are saying about the behaviors your mom is exhibiting at the facility she is in. My MIL actually had the same issue with a bad UTI triggering her Alzheimer's to the extreme. She had to go to the hospital to get treated because we had no idea that a UTI was causing her all the problems she was having at home. We discovered that she is highly uncooperative with people she doesn't know when she isn't at home. She actually had to go to rehab for 6 weeks after the hospital stay because she all of a sudden couldn't walk after she went into the hospital. She had walked just fine until then. At first, we thought it was the UTI that had caused her to lose the ability to walk. She refused to do anything for the staff in rehab. She would lay in bed wetting herself and would cry and scream for help all the time. I could tell some of the staff didn't want to have to deal with her because of how she acted. To top it off we discovered later that she was going through horrendous withdrawl from quitting smoking. She had smoked 2 packs a day for years before all this happened. My point is that the only time she showed any type of real cooperation is when my husband and I would go visit her. She would get out of bed and walk and socialize the best she could. She is very stubborn when it comes to listening to anyone but my husband and I. She will flat out refuse to cooperate when she isn't at home. She is home now, but it has been one heck of a journey, so I have an idea of what you are talking about. I hope and pray you can get the help not only for her but for yourself too. I know how stressful it is to watch a loved one in that situation. They get so confused, and honestly I can't blame them for that. It must be pretty scary for them.
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Dear Clair33,
My Mom is in hospice [dementia/cancer] and the 3rd day she was there she tried to get out of bed 3x. So they moved her into the room that is directly across the nurses station so they could keep a better eye on her. Mom was bored being alone and not seeing another human being. And now she waves and talks the staff out of their ears. She also had UTI, antibiotics that worked, but has a catheter tube [permanently] inserted into her uthera and the urine flows into the bag, which works wonders for Mom. Also, she has a bed alarm. Its a little machine attached to the bed with a soft string that clips onto her night shirt. If she tries to get out her bed, it makes such a loud sound that they know what she is trying to do and run to her aid.
I agree totally with Lizann and reindeermama. I am appalled at that NH. Move Mom. That place sounds uncaring and incompetant. My Mom has been crying a lot lately and pleads with me that she wants to come home. It hurts like crazy. God bless you to find a good, compassionate, and caring facility for your Mom.
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Have you tried more natural methods of sleep help such as melatonin? My MIL also has chronic UTI's and they do make her mentally weird when they act up. There is also such a thing as Sundowner Syndrome, which causes elderly folks to have confusion and some symptoms of dementia but only in the nighttime. It may be that AL is not for her, unfortunately. My MIL was in AL and she fell - twice - and broke her hip - twice. Regardless of what it was, she couldn't reliably stay put in bed and ended up severely hurt. One thing of note though was that even during her severe pain with the hip fractures, her doctor wouldn't put her on anything stronger than tylenol (can't take anti inflammatories because she's on Coumadin). He said that it only upped the risk of her falling and further injuring herself when combined with her normal evening confusion issues and on top of that being on some kind of opiate.
By the way, this issue could somewhat resolve as she adjusts to her surroundings and if her UTI pain is handled. Best of luck. Very tough.
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I still think an assisted living facility is not the right place for her-and am surprised they even accepted her-they are not run with someone being with her 24/7 they are for people who can live alone most of the time and go into the dining room for meals and engage in activities planned by the staff-the one my friend is in is set up with their own rooms and they have to be able to go by themselves independly with or without a walker or cane or w/c and be able to go to activities byself or employ their own aides.
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My Mom 88 y.o. who has dementia(recently upgraded to moderate Alzheimers) started getting up in the middle of the night at her ALF this past summer after a hospitalization and time in a rehab center. She started becoming incontinent at night and was wetting herself and getting up to clean herself and her underpants. They also had her checked for UTI which fortunately was negative. The staff suggested to us and my Mom she try Depends for night time use. It has worked for her with improved sleep(the Depends pull the wetness away from her skin so her sleep is not as easily interrupted) and not afraid of wetting the bed with improved energy level during the day now since she is sleeping better.Us kids also feel with her improved sleep we see more of the Mom we remember. My Mom also has some stuffed animals, extra pillow and soft blankets for things to hug which seems to help her feel more secure and her living quarters has most things from the old home. We have been blessed with a wonderful staff at the ALF my Mom is in......she is in a dementia/Alzheimer's unit. They work with her and us children which we are so greatful for....it is a very hard road at times....we families definitely need the staff's expertise and emotional support at the ALFs and NHs! She has been there for 4 years now and my Mom may eventually end up in their NH section as her Alzheimers progresses. Family and friends visiting frequently, especially as your Mom transitions does help. My Mom has bonded with staff which has definitely helped her feel more secure. God Bless
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Oh my gosh thats alot for someone 96 in a few months. Can you spend the night with her and see whats happening? Maybe she is scared and doesnt want to be alone in a new place? UTI's can mimic dementia, maybe she would be ok if she went home again with help and stop crying. Good luck and when all else fails, sing to her, they love it.
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Dear Clair: I would make sure she isnt in withdrawal from the Xanax. When i stopped that i had withdrawal (severe) for almost a month. I had my mom in AL also but she declined quickly and i had the whole family there all day. We only went home to sleep. That nighttime deal and falling was a problem for us too. Eventually the hosp bed at the lowest level to the floor worked best. I was afraid the whole time we would be kicked out too, but the staff were pretty good about her falling, probably because they didnt have to do much for her during the day. I know what a bad situation this is for you. I used to sit in my car and cry because I felt so alone, couldnt get her into a NH, etc. The best advice I got was from one of the survivors who told me it would eventually be over and it wont last forever. I took that advice to heart every stinking day! I will be thinking of you tomorrow. We are placing my mom's ashes with my dad's. It was a long haul and dont know how i did it, except for HaugenDoss vanilla. Blessings on you and the family and especially on your mom. Tonio999
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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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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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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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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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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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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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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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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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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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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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