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Mom is in NH. Dementia. No short term memory. She does not typically repeat herself a lot. And I know that when she does to just respond and redirect. But this situation seems a little different and I wonder if anyone can suggest a variation to the formula?

Mom: I have to go to the bathroom RIGHT NOW!
Me: I know Ma. We've called for help. They'll be here soon.
Mom: Help? Why do I need help? just push me to the door right there, I'll walk those few steps to the toilet.
Me: I'm sorry. I wish I could. But it takes two helpers and a machine. You cannot stand up.
Mom: I've never heard of such a thing! Why won't you help me?
Me: It would be very painful for you to try to put weight on your feet. Trained people have to help you.
Mom: I've never heard of such a thing! Why won't you help me?

Repeat and repeat -- interspersed with "Look at this strange hairdo in this magazine" "I can't look now I HAVE TO PEE!"

Also, she seems to have a lot of false alarms. Since it is painful for her to get out of her chair even with a sit to stand machine, are there any suggestions for reducing those? (We have a care conference in a few days.)

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Sounds like the care meeting was reassuring for you both Jeannie. Job well done.
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Yes, I'm certainly glad for the PAL. My son is recovering from a motorcycle accident and only his right arm is weight bearing. But because of the location of his injuries they can't use a PAL or a Hoyer lift or any kind of device. Hard!
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Well, it sound as if they're on top of the situation. I'm sorry about her pain, that she can't even go to the bathroom when she feels like she needs to, no matter how often that is. I'm glad they have such an apparatus as a PAL, I had to look that one up and even watched a few videos of it in use. No wonder they can't jump up to take her every 10 minutes. Bless her heart for having to live like that. I'm glad she has advocates like you and your sister, though, to help her through the remainder of her life.
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Sister R and I attended the care conference today. Mom is seen as stable, with some additional memory loss. She is pleasant and popular with the staff. The staff is grateful that her family visits her so often and also reaches out to other residents. None of this is new.

Staff has also noticed her frequent "false alarms." She has recently been scanned and she is not retaining urine. She does not have a uti. Since the alarms are "false" she probably doesn't have an overactive bladder. They currently have a few other residents in this situation. It is most likely part of the dementia -- getting false signals or misinterpreting the signals she gets. When they are pretty sure the alarm is false (she went 10 minutes ago) they try to distract her but if she insists they get two aides and the PAL and take her in. R says she is usually able to distract Mom too. I guess I'll have to try harder on that tactic.
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Thanks for all the comments. Even those that don't apply to our situation may be useful to others with similar situations!

About Mom's pain: She has dealt with arthritis pain for decades and many, many drugs/patches have been tried. Most either make her nauseated or loopy. Her arthritis pain is well managed with Tylenol. The avascular necrosis is only painful during transfers. PRN won't work unless we knew 25 minutes in advance of when she needs the toilet. :(

Bathroom needs: She doesn't have any panties in her drawers. Although she is not totally incontinent she wears disposables all the time. But think about this -- if someone told you, "that's OK, just go ahead and pee in your disposable panties and the aide will change you" would that bring you comfort? Of course we have told her on many occasions, "Don't worry if you leak a little, or if you can't hold it until help comes. You'll get cleaned up right away." This is simply not acceptable to a 94-yo dignified lady. We will be addressing the frequency of perceived need tomorrow. It is good to rule out other possibilities, but I'm afraid that NJCinderella and ferris1 may be right -- it is part of the inaccurate messages her brain receives with the dementia.

Ferris, you are absolutely right about the need for patience. At the risk of immodesty, to be more patient is impossible. My sisters and I are the personification of patience with our mother. Maybe we wouldn't be 24/7, but in the hours each of us is with her each week we have no trouble managing that. (A little less so with the staff occasionally.)

igloo572, I'm not sure I understand your videotape idea. Mother cannot bear weight on her legs. She is a 2-person transfer, with a PAL (sit-to-stand) machine. She does not get out of bed on her own. If she tried she would be in extreme pain and no doubt would fall. Do you mean I should video tape the transfers? I have spent several nights in her room. She did have a lot of anxiety at first but she has settled well into her room and her routine.

The staff: The number one complaint in all care centers is the length of time it takes to respond to call buttons. Countrymouse describes the situation very well. I have just experienced it with my son, both in the hospital and in the rehab center. When you are at the mercy of someone else to get to the toilet, there are simply going to be uncomfortable moments.

Mother is popular with the staff. She is pleasant and occasionally witty and compliant (to the extent she can remember) and participates in activities. They treat her respectfully. I am certain no one has ever scolded her for an accident. They can't always come immediately. That is a fact of NH living. But she feels safe with them. (And when she hollers in pain during transfers she apologizes to them and tells them she knows it is not their fault she hurts.)

I guess what we've got is as good as it gets under the circumstances. I just wish there were magic words to convince Mom we'd help her if we could.

I'll let you know if we learn anything at the care conference tomorrow.
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Jeannie, I know you are a very experienced caregiver but I think having your Mom in a N/H is very different from taking care of your husband at home. When he called you were right there and saw to his needs at once. In Mom's case this is not possible as you realize. having ruled out a possible UTI or irritable bladder it sounds as though she may have had some experiences when there was no family present and for whatever reason the aides took too long to reach her and she did have an accident. if she is normally continent maybe somebody scolded her. Since then she has it fixed in her mind that someone has to come immediately which of course in a facility is not possible especially if she has false alarms. Her own aide also has to find another who is free (good luck with that in an understaffed N/H) The sit to stand lift also has to be located and not already in use. I am nor making excuses - I would have my finger on that bell every 30 seconds. I am just looking at it from a practical point of view. When my son was born the call bell was left unplugged and suddenly his head was crowning and I had to find the bell and plug it in so can understand your Mom's sense of panic, which constantly leads to the repitition and the expectation that YOU should be able to help. I would try telling her the nurses don't allow you to do it if you think she can understand that. If the aides take longer than 5 -10 mins to answer a bell when they do arrive ask them why they took so long. Be nice ask if someone else was having a problem or if they were very short staffed. If this is constant complain to the floor supervoisor or nursing director. I am sure you will bring all this to the attention of the care planning team. It is possible that she has simply developed an anxiety about this particular event. Don't really know just guessing.
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I'm not being intentionally mischievous, but how long are the aides taking to get to her? My mother hasn't got to this stage yet, but I have lost it (silently) in hospitals before now and gone to hunt out nurses for other patients once their pathetic (literally) cries for help have gone unheeded for longer than I can stand. There is, rarely thank goodness, a lackadaisical attitude towards patients wearing continence aides that makes my heart sink to my boots. I know that time is short and the patients are many, but I really hope they're jumping to it at your mother's NH.

I don't know why she might be feeling urgency if there isn't actually anything to void, but I certainly would bring it up for investigation.
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Her brain is not receiving the right messages. Do not get all stressed about her situation as nothing is so tragic that cannot be explained by her disease. Try to be more patient and I know she repeats the same mantra over and over, but it is the broken record in her head that keeps doing it, not her (normal self). Hang in there!
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My Mom (94) was in hosp recently, the tests and fluids had her hopping to empty her bladder. The young surgeon was standing at the foot of her bed as she was insisting she was getting up to go to the toilet, telling me how it was against hosp policy to get up unattended. I gave him the look, like, 'Hey, if you don't get out of her way she's gonna jump right over you..." I can't imagine how frustrating it is to be told to wait. Another time I realized a nurse had left her on a bedpan for long stretches of time. That was the last time I left her alone to fend for herself.
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Jeanne - what might be useful is to the next time you are there is to videotape from a low angle your mom's movements to & from her bed to the toilet. Like you have your iPhone recording but it's low like adjacent to your knees. It might be a way to see if there are mobility issues that we just can't see or be aware of from a looking down / standing over viewpoint.

back when my mom was still mobile, I did this and found that she was curving her feet somewhat under her when she got out of bed.& this probably also led to some numbness. When she finally stood up, her balance was always off as she was tucking her outside toes under. And pain from her doing this too. So she would invariably lurch forward and out of balance. I got rid of her softer soled shoes (those kind they sell that roll into each other that you throw in the laundry like socks which I had thought were a perfect solution for shoes) and to a more firm shoe (the lightweight Keds Mary Janes with velcro strap) so when she did get up, her foot would just plant better. At a care plan meeting we discussed this and they just added to her chart that she was to "stay in shoes" 24/7. Otherwise they'd take them off of her for bedtime.

Another thing to think about is the lighting in the room & bathroom at night. If you can try to be there very late to see just what the lighting is like for them from her viewpoint of lying in bed as it could be seriously different than what we see during the day when we visit. This too can be an issue, back when mom was in IL and dementia was increasing, she went into a frenzy on people coming in at night and looking through her things in the other room and on the balcony. WTF? Well what it actually was, was that the drive path to the residents parking was alongside her side of the building and at night when someone came in late their headlights would chase around mom's living room and her balcony. It was only when I spent the night, that I realized what was happening. (Looking back at all this it is now funny…but wasn't 4 years ago) Perhaps your mom may have some vision issues in seeing where the bathroom & the toilet is from her vantage point? And it's making her anxious so asking you to help lessens that? Good luck at the care plan meeting.
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jeannegibbs

I can't believe it! This is almost exactly like what my mom was like when she was in the nursing home. She also had dementia along with incontinence. She would get mad at me and ask why I wouldn't help her. I realized after a few times that I could stall her a little by telling her I would go and get help. She would then ask me why I couldn't do it. I would tell her I wasn't feeling well (actually I wasn't because I was struggling with breast cancer at the time), and then she would tell me to just wheel her to the bathroom and she could do it herself (she actually couldn't even walk or stand at the time, but in her mind she could do everything). She said she didn't need help, and why was someone insisting that she needed help. I went along with it in the best way I could knowing that she could not help herself. She also had many UTI's that did not help the situation. It was very hard for me to see her slipping downhill in this manner, but was easier to deal with if I didn't try to argue any point with her or try to explain things, because she was not in a place to understand things. Her short term memory was not there and so things that were said or happened within a few minutes were forgotten. We went down "memory lane" a lot which seemed to help even when we were waiting for help to come. I'm sorry you have to go through this difficult time, but know that others are there for you and some have gone through or are going through similar situations. Hopefully some of the advice and ideas of others will be a help you get through this. I do miss my mom, it was 2 years in August of this year, and even with the struggles we had together, I would still do it all again if I had to. Good luck and God bless.
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Keep in mind that those with Alz/Dementia also lose the ability to recognize the urge to go as well so while it may be a UTI, it also may be due to the lack of their body/brain working together. Yes, rule out UTI but sadly, it just may be part of the stages of her disease. What about wearing Depends?

I can't imagine wanting to go to the bathroom and having to "wait" for help. I think staff sometimes has no clue what its like to be helpless. If need be, be assertive with them and be a pest. I found that being vocal got results versus politely waiting.
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Jeanne, have they tried topical pain patches?
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Also, would an incontinence pad or brief help her feel less anxious about not making it to the toilet in time?

I get the same thing from my mom - why won't I help her toilet. No way on God's green earth am I going in there with her.

I got some guff from a care worker once because I had called for toilet help, but mom refused the lady who came to do it. It had to be me. I wouldn't do it and the woman tried to make me feel guilty by saying "Oh come on, why don't you try? It's your mother!" I said back that 1. I have a shoulder injury and couldn't help catch or support her like she needs. I can't hold her up. 2. we have a complicated past that I really don't think is any of your business at the moment, and I am not going into the toilet with her under any circumstances. 3. If mom doesn't need your help to toilet, she certainly doesn't need mine.
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Thanks, all! I am going to check with my three sisters. Among us we visit Mom every day. If we agree that she seems to be having a lot of false alarms we will bring that up at the care conference -- along with uti, constipation, overactive bladder, etc.

An aide has just suggested using a toilet riser to minimize the distance Mom has to ride the sit-to-stand sling up and down. It seems so obvious but none of us -- professionals and family -- had thought of it! It might help minimize her pain.

I guess there are no magic words to make her feel better about her daughters not helping her to the bathroom. Since she thinks all we'd have to do is wheel her to bathroom doorway and she could walk from there and since we all do wheel her all over the place and are obviously capable of it is doubtful that an injury or sling would provide an excuse. Sigh. I guess I'll stay with, "I'm so sorry, Ma, I'd help you if I could but if you stood up your pain would be terrible."

Mom she has avascular necrosis of the bone stem that normally connects to the ball that goes into the hip socket. That means the stem does not exist any more. There is a gap between the leg bone and the hip socket. This will never improve. She will never be able to bear weight on it. And most likely she will always have some pain while being transferred, dressed, and toileted. The rest of the time she is comfortable. Overall she is content in the NH.

Like most caregivers, my sisters and I continually look for opportunities to improve the quality of her life, but we also have to accept the reality of the situation.

Hard, isn't it?
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Hi jeanne, no my mom did not complain of pain beyond the usual headache/backache she seems to be always troubled with, that's why her constant neediness and restlessness was so confusing to me at first.
Another thought I had is that it could be a constipation issue. Everything OK in that department?
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Jeanne, one other thing. When all else fails, I give my mom a neck rub.
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Jeanne, I'm rather new to this forum so I didn't know your background. I know how I've tried to reason with my MIL and it's like talking to myself. Added to the mix is that she is extremely hard of hearing. Well, excuse me, I mean - I Mumble! LOL So we are like the 3 stooges around here sometimes.
I'm always a little leery of adding more prescriptions to the mix, especially if they don't make much difference. But I will be checking into the Toviaz and Myrbetriq for sure. I just thought that if you could get to the root of the problem, then maybe she wouldn't have the urgency. Every day is a new day, isn't it? . I had another thought. They could check for urine retention. Where you just can't completely empty the bladder and so you constantly feel like you need to "go". I think it is a different issue from overactive bladder, although I could be mistaken. Sounds like you're a loving daughter and you still have your sense of humor. Good luck!
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Could be UTI or overactive bladder. We had my Mom on Toviaz, didn't notice much difference. Now trying Myrbetriq which seems to be working better for her. Though there are still times she will be in the bathroom to pee three times in five minutes. Almost like the urge does not turn off, like getting stuck on so many things these days.
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OK, my final creative idea of the night - wear a "sling" on your arm when you go visit your mom. Maybe that visual cue will remind her that you have an "owwwwie" on your arm. Only if that wouldn't worry her. I hope you can find a good way to deal with it, I know it's frustrating for both of you.
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Jeanne, what you are doing sounds pretty good. I like combining it with Blannie's idea -- Mom, I'm not strong enough. I'd drop you right on the floor. They should be here in just a few seconds to help.

It might be a UTI or it could be other things. Sometimes an irritable bladder can come from impingement on the sciatic nerve. I sympathize with her that she has to wait. I've learned that your mother is normally a pleasant person, so I know she is concerned about wetting herself. I also sympathize that she has lost her privacy. You are doing all you can do, it sounds like to me. It would be great if the aides could be there in a few seconds when dinged, but I know it takes a bit longer.

I hope someone can figure out why her bladder is so irritable and that it is something fixable.
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It's my experience that you cannot really explain or reason with someone with dementia, so you are probably just spinning your wheels trying to do so. More than likely, she doesn't remember that she has issues with standing, or, at least, to the extent that she needs a machine to do so. It sounds as though she has overactive bladder. There is pharmaceutical help for that, but of course, there are also side effects and interactions that need to be taken into consideration, so that may not be an option for her. Something to discuss with her doctor. I am dealing with the same with my MIL and it is on the list of things to discuss at her next appointment. In the meantime, I am considering the many trips (both day and night) as exercise, since she is becoming more chairbound. The few feet from the bed to her bathroom, or her chair to the powder room is about the extent of her walking these days. And she uses a walker or cane for that. Oh, she walks to the dining table too. Other than that, she uses a wheelchair. The day is coming very soon that she won't want to walk at all, though. Her knees are going fast and the shots don't help much anymore.
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That is creative, blannie, and I might use it. It is nice and short. But she won't remember it any better than the explanation I give now, so it will still be a matter of repeating and repeating.

ba8alou and cwillie, thanks for the reminder about uti. She has had one and this behavior does not seem similar to that episode, but I will bring it up at the care conference this week.

Breakthrough pain? Oh my. I suppose that could be possible and if it is it will be extremely hard to resolve because there are so few pain meds she has been able to tolerate. She is able (and willing!) to react as expected to pain -- ou, ou, ou, This is hurting me My leg hurts I can't stand this, etc. Was your mother able to identify and articulate her pain, cwillie?

pamstegman, this is not manipulative behavior. But if it were, how would that change how we react to her, and what we say to her repeated requests for help getting to the toilet?
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Could you use a bit of "reverse confabulation" and say you hurt your arm or back, so you can't help because it would hurt you?
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False alarms suggest she is being manipulative. It's not that she means to be this way, it is just an integral part of dementia (and sometimes retardation) to want to make other people jump up and run, thereby controlling their situation in the only way they can.
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I don't know if this would apply to your mom, but when my mom was becoming agitated like that last month it turned out to be caused by breakthrough pain.
Also, since it seems to be bathroom related, could it be a UTI?
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Has she been checked for a uti? I know that sometimes those can cause false urges. Coward that I am, when I'm visiting the nh, if mom has to use the bathroom, I ting the bell for her and when someone doesn't show up in 15 secs, I say, I'll go find someone to help you. And I do, but I remove myself from the room until the staff has toilet ed her and gotten her back to her wheelchair. Now of course, while I'm out in the hallway, I've got folks asking me to get them coffee, back to bed, etc. But easier than dealing with mom.
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