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.)
Also, since it seems to be bathroom related, could it be a UTI?
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.
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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