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

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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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