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We've had a safety frame with elevated seat in my parents' bathroom since I've been here -- almost 7 years. Today Mom took the frame off the toilet and said she doesn't need it. She said it was what was making it harder to go. I told her it helped her get up and down safely. She said without it, she would be able to make her legs stronger. She said they are getting so weak now she can barely stand. I told her it is why the safety frame helps and she flew into a rage that she was NOT going to have the safety frame on the toilet anymore.


I left her alone a minute, then told her what was most likely going to happen if she didn't have the frame on the toilet. I told her that ultimately she was likely to fall and may end up in the hospital. She said she didn't care, and she was not going to put it back on the toilet.


So here we are with her being determined about something that I will worry about. She can't walk without her rollator because her balance is so poor. I see nothing good coming of this. I wish she was easier to care for. It seems like she is constantly coming up with ideas to make things harder.

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((((((Jessie))))))) I am so sorry. Sometimes you have to let it happen even though you know the results will not be good. Sounds like she is getting to a point where she may need more care. Is there any chance she will forget in a few days and you can put it back on?

So hard to watch them doing things you know are not good for them and being helpless to do anything about it.

Please don't worry. It does not accomplish anything. Just be prepared for what you think will happen and go about your day. .
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Jessie, I remember when it was recommended that my Dad have one of those toilet seat frames to help him lift himself up from the toilet.... but my Mom didn't want any part of that as it ruined the decor :P So what happened, Dad would fall trying to stand up. Mom still refused to have that frame.

I find it interesting Jessie that your Mom is thinking that without the frame she would gain strength in her legs, which is true, but she would need to go to the bathroom probably 25 times a day to get any exercise from doing that.

Try substituting said "exercise" with something else. Like have her sit in a straight back chair and have very light weights around her ankles, having her lift her legs straight out, that works a lot of muscles. Don't know if that would be more or less interesting then standing up from the toilet. You never know.
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Freqflyer had a good point when she said that sometimes you just have to let them have the consequences of their own decisions. We can't make them do things that they won't do. I thought that if she does fall, things could change drastically and she would wind up in a NH. I know she would hate that, but it is one of the consequences that she might face. I can already hear people saying to me, "Well, you knew she had dementia. Why did you let her do this?" They don't really understand that we can't make them do everything if they have their mind set against it.

Hoping she'll start using the frame again. I dread hearing that thump in the night.
(5)
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I too have faced the safety issues with my own Dad, and my FIL. MY Dad had PSP, an autoimmune neurological disease, and he could not let go of his need to "help", by bending over to pick up things he'd dropped off of the floor, which often ended with him falling and injuring himself, he blew out both rotator cuffs, had a failed surgery on the one, but as a life long Cortisone user for his severe Asthma and Crohn's disease, he had brittle bones, and had several bad breaks because of his stubbornness, even though we were right there telling him to wait and that we'd "get that"!

With my FIL, the Dr ordered a very fine Rolator for him to use alway, but which sat in his bedroom for a year, only to be used when he "went out", which is rare, and usually only to the Drs. Finally after multiple falls in the house, I had had enough, and insisted we speak with his Dr, and got PT in, to give him repeated lessons on how to use it properly, and every time he walks or stands, and I was very insistent, telling him that when he fell and broke his hip or shoulder, that would be it, and he wouldn't be permitted to come back to our home, as we wouldn't be able to manage him any longer, as we too are having our own back, knee mobility issues! Finally he caved in and uses it, Every time, and the falls have definitely decreased, but he did topple it over on top of himself the other day, grrrr, probably not locking the handle or some such thing.

My FIL is only beginning to show signs of dementia, so I'm sure there are other things that come into play with others and their struggles with their strong willed LO's. It's a battle of wills, as they get so determined to fail! I wonder if we will be like this when we get older?
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Just something to check - the frame isn't getting in the way when she's trying to wipe up, is it?

You can get grab rails that fix to the floor, to one side, which she could use to help steady herself when she gets up. Obviously that's a trade-off too, though, because you have to put it where she can't trip over it ,and she'd also need to bring her walking frame or stick in to the bathroom with her... [groan, head in hands].
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Have a permanebt grab bar installed next to the toilet?
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Wish there was an easy fix. I could fix the seat in place, but my mother has rage issues. I wouldn't be able to be in the same house if I tried to enforce my will on her. Mom's problem is not really weak legs -- they're strong. She has balance issues, diabetic feet, and is totally bent over from spinal stenosis. So she is strong, but uncoordinated. She also have the old-age problem of getting up from a low seat. This is something the elevated seat on the frame helped with.

I think the main thing she has against the frame is she can't get a good grip on the seat with her bottom. She's used a frame for over 7 years, but decided today that it was the cause of her constipation. We'll just have to see how this goes. She's 90 years old. I want to tell her there is no cure for old age, but I don't think she grasps that she isn't going to be 40 again. You're right, ff. Getting up off the toilet seat isn't going to help strengthen her legs, but she thinks it will. Ah, well. There's no reasoning with dementia overlaid on a difficult personality.

Heading to the grocery store. We were doing mid-afternoon blood sugar test starting yesterday, but I had her doctor change that. Really the doctor had meant to test her sugar at lunchtime. That's a good thing. I didn't want to be stuck here all afternoon to test her sugar.
(4)
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Jessie; what about looking, at least on line, at raised toilet seats WITHOUT bars? they seem to make some know that are softer material.
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Actually the safe frame with elevated seat was the best solution. It was stable and just what was needed. But she has decided that it is what is making her constipated. There's a faulty cause-effect going on, so we'll just have to muddle through it. If the safety frame was new to her, it would be one thing. But she has been using it for years, so I know it is not to blame for a problem that she has been having for years. Her Tylenol III and age are the most responsible there. She also feels like she has to have a BM everyday or something is very wrong.

Poor safety frame. It didn't do anything wrong, but it is getting blamed. :)
(6)
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Jessie, what im talking about is a raised seat with no frame.
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I bought a raised seat one time after my father died, but it moved a bit on the toilet. I heard it can be a common problem. I was afraid that it would be enough to make her fall off with the shift.
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I see. I guess I'd let her have her way until she gets over her rage, then. Hoping it works out, J!
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It's tough to deal with people who rage, but, I suppose you have to make a benefit vs. risk analysis. I think I might be prone to lock the bathroom door so she can't get in and remove the raised seat. And then accompany her each time to the bathroom to ensure that she doesn't take it off and that she uses it with the frame so, she doesn't fall.

She might rage, but I think that might be easier to deal with than a fractured hip or worse. But, you know what you can deal with. I wouldn't count on a fall or two teaching her lesson. It sounds like that is not likely to happen.

If she falls and has to go to surgery and rehab, would that mean she would in a facility indefinitely?
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Yes, it would. It is something I thought of when it comes to possible consequences. This evening I am trying a different tactic. She had the safety frame setting in the bathroom. It is only the size of a closet and we have the shower in there. So I took the frame and set it in the back yard. I told her I took it out. She told me that I was going to have to put it back because she might need it.

This is craziness, I know. I bought the frame for her after my father died because the old one was really stinky. Urine had gotten into the seat. She told me that this one was bought by her for my father and that she didn't need it. So I was the good daughter and set it back out of her way, suspecting she would ask for it back. I hoped a little reverse psychology might help. Often she fights me and will take the opposite stance of anything I try to do. If she were a child I would call it oppositional defiant disorder. So I'm working with it and hoping she makes a good choice in order to spite me. Yes, this is just nuts. This is certainly not how I planned to spend my retirement.
(5)
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OK Jessie I have different type of frame. I have the elevated seats because although I can't get up without a grab bar I find them unstable. I have a fram that attaches to the toilet seat itself and Mom would probably not be able to get it off. you have to remove the toilet seat and slip the holes in the frame over the seat screw then reattach the the toilet seat. It you do the seat screws up really tight it is almost impossible to get off plus you have to kneel down right beside the seat to attach it then do a lot by feel.
No suggestions about the furor it will cause but she won't be able to remove it.
You actually sit on the regular toilet seat but have arms.
Don't ask me where to get one because you probably don't frequent the same rummage sales as I do. It is better than putting a commode sans bucket over the seat although that works too and is higher but there is gap and explosive diarrhea splatters everywhere. Don't like that though because I have to clean up my own messes. I"ll have a look and see if I can find one in a catalog.
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Jessie, would she possibly agree to use a commode? I don't think they're as stable - my mother fell over once in the bedroom while trying to get off, but there might be a way they could be temporarily anchored in the bathroom.

As to your point that someone would ask why the situation is such that she fell, well, unfortunately people who aren't caregivers don't understand what we deal with and specifically the fact that our elders don't always listen to our advice.

I'm still trying to think of a smart retort to these people. Maybe I should suggest they spend a day doing caregiving and then re-assess the situation.

You can only do so much. From your posts, I know that your mother is quite insistent on having her way, and at some point there's just nothing more you can do.....says the daughter who still frets and worries when her father goes for a walk w/o his oxygen.
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Jessebelle, Get out your helmet, because when she forgets what she did and said, she will blame you.
Can you clean it up really nice, tell her that you were getting used to it, can you have it in your bathroom? Etc. etc. using reverse psychology?
Love your little monkey wrench!
{{{{{{{{{{{{{{{ H U G S for today ! }}}}}}}}}}}}}}}
Let us know how this comes about.....
(4)
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Thanks for the suggestions, everyone. The safety frame is the kind that looks like a bedside commode, only the tube opens at the bottom. It is a very nice one, though it does look odd setting in the back yard like an orphan child. Glad we have a fence or the neighbors would be wondering when the junker car will appear in the front yard.

She didn't mention the frame again today. I imagine she is hoisting herself up and down using the sink that is next to the toilet. It is okay as long as the force doesn't hurt the connections.

Life is getting so crazy. It is still so hot here in Birmingham -- 97 today. The area is scorching and I've done my best this summer to keep the plants from dying since we've also been in drought. She went outside today and told me the plants were dying because I scalded them. Huh? Don't ask me what that meant. It didn't bother me, since I realized she was speaking from a land far, far away.

I'm not going to try any other frames or anything, because the orphan child out back is the best solution. I can't go back and forth to the bathroom with her, because she uses the bathroom a lot. That would require my whole life. I try to do things with less work than more, since I'm already tied up most of the day with caregiving tasks. I don't complain, though, since when I do I'm told that I don't do anything. :-O

Just another day in the House of Crazy.
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It feels good to say the word crazy. I skirt around using medically and psychologically appropriate words. The best one for this situation, however, is crazy.
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Has anyone seen the research on the best position to poop for the human body is squatting?
And the recommendations to raise the legs/feet up on a stool while sitting to get the more correct squat position?
Well, I am sure not going to reference it here, you all can look it up-maybe it was an article here on the forum, but I am so afraid to be wrong on this one. It is a sensitive subject, and would not want to get Jessebelle more trouble from her Mom if the advice were not credible. I do follow Dr. Leslie Kernistan, M.D., a frequent contributor on AC forum and a geriatric specialist. Maybe I read it there.
Is squatting even safe for the elderly?
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Jessie, I'm really sorry that it's all your fault. Everything. The plants, the trees, the frame. I do remember that there was great feeling of relief in realizing, in my first marriage, that no matter what i did, my husband would tell me I'd done it wrong. I stpped trying to do things correctly, and i stopped apologizing.
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((((((Jessie))))) it is right and appropriate to use the word crazy. I remember when I first realised that mother had BPD and that it was a serious mental illness. My sis downplayed it with "Mother has a few emotional problems, but..." No! She has a serious mental illness. It was a relief to call it as it was. You are dealing with someone with dementia and a serious mental illness and it is very challenging. Please pat yourself on the back for all the hard work you are doing. I do hope you are spending some time thinking of your life in the future and what good things you are going to do for yourself.

babalou - re the blame game. It certainly helps when you realise that you are the object of it, but not responsible for it.
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Thanks, Golden. We can get so caught up in choosing politically correct words these days. I usually expect to be politely corrected by someone when I choose a word that isn't so pc, like crazy.

Babalou, your ex sounds like a real jewel. I can see why he became a "first husband."
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Jessie; I'm curious, has this been your mom's thinking pattern all her life, that someone is to "blame" for everything, or is this just since the onset of the dementia?

Certainly, some kinds of dementia lead to disordered thinking. My mom, who has vascular dementia from a stroke, is convinced that when she sees a man in a suit, the NH is being sold. If she hears CNAs talking outside her room, she thinks that there's a strike brewing. So the mis-attribution thing may be common in dementia. I guess since you're the only one around, in her mind, you must be the causative agent of all evils.

It must be MADDENING!!!!!!! And yes, it is CRAZY. ((((((((hugs))))))))
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babalou, my mother has had generalized anxiety all her life. She has been on some type of benzo since I was a child. She has always had problems with rage. I remember as a child I would stand at the kitchen door and listen to her talk about things. She could work herself into a rage just talking. No one would be saying or doing anything. It was all in her mind.

It was important to her that we appear normal to the outside world, even though my father had what is now called Asperger's. To everyone on the outside she was sweet and meek. She still is.

My mother's earliest methods of appearing normal was to deny reality or blame it on others. If I mention that Dad is not like the other fathers, she would say that he was normal and that my thinking was off. If I mentioned her anxiety and anger, it had never happened. I imagined it. I later learned this is called gaslighting. She always had bluebirds and butterflies fluttering about her. And I think she believed it herself and still does.

My mother is of the old school where men are far above women. She is still very sweet to my brothers when they come. I get the brunt of things. It isn't because I am the one that will keep loving her despite what she does. It is because no one else will have anything to do with the situation. I don't blame them, because one is far away and the other has job, family, and health problems.

I work with it the best I can. Yesterday she had instructed me not to water the plants anymore because the yard was a mud hole. This is a delusion. I've been trying hard to keep her new plants alive all summer in this heat wave. (That is another crazy story about the plants.) There is $600 of plants that need to be protected. I didn't want to confront her, so I sneaked out of the house this morning and watered them. What she doesn't know won't hurt.
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Mom asked me to put the toilet frame back on the toilet this morning. She was having too much trouble getting up and down. I told her I was glad to do it, and it was nice the frame had two days in the sunshine to freshen it. All's well that ends well. I'm relieved to get this safety thing back in place.
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SUCCESS!!! You deserve it!
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So glad!!!! YAY!!!! A small but important victory.
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This is what I was hoping for. Good thing is that it was a win-win. She was able to keep control...

Actually, I just thought about both the win's being for her. She was able to keep control and she is able to keep safe because of her decision.
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Jessie, that's a great way of viewing the situation. You're right - it's a win-win for her, but for you as well, and you've found a successful solution for future events (and we both know there will be some).
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