Answering the repeated question "Why won't you help me?' Any advice?

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.

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?

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?

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.

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.

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.

Jeanne, one other thing. When all else fails, I give my mom a neck rub.

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.

Sounds like the care meeting was reassuring for you both Jeannie. Job well done.

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.