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OldSailor Asked February 2019

Incontinence and fear of bathroom toilet?

DW will very seldom use the toilet and does both of her businesses in her disposable panties. I was wondering if this could be because of her sometimes fear of sitting down on the toilet? It takes a lot of effort on my part to get her to sit down. Even the companion had trouble today.


At other times during the same day she will sit while I am changing /cleaning her. But she will not use the toilet on her own. She would just two weeks ago.


Just curious, no major problem with this. I am learning more about understanding this incomprehensible disease.

Veronica91 Feb 2019
I grew up with an outhouse till about 8 years old and when we moved to an apartment with indoor plumbing I was terrified of the toilet. Also terrified to use the outhouse at school because i was afraid the old man who emptied the buckets would come round the back and open the door and remove the bucket and ee me sitting there minus underwear!.
Enough about me now I am just scared I won't make it in time.
You can get side rails that screw under the seat which may help or simply let her use a commode somewhere other than the bathroom if that helps.
Being afraid of falling may also be an issue so back her up till she can feel the seat with her legs and she may be confident there actually is somewhere to sit. If yu can no longer see behind you to see what you are sitting on it can become an issue as you don't want to fall. I totally understand the bedding over and plopping down it is a fear thing. Try and go with the flow there will be omething different when next week rolls around.
OldSailor Feb 2019
I was 15 before I lived in a house with a toilet inside. I hated the cold north wind in the winter and feared bees in the summer. But the second school I attended did have indoor plumbing.
The handle attachments would not work because she refuses to get near it. Backing up is a nearly impossible move. She does not look where she is sitting. Once in a while she will back up to feel the object she is going to plop down on. But not often.
It really seems like she is afraid of some unseen monster is going to get her.
I know it is just one of those phases some of our LO's go thru with this disease.
For instance, today she went to the bathroom by herself. But only once. The rest of the day she just used the disposable underwear.
This seems to tell me some of those cells function once in a while.
It is no big worry. I will live with it and hopefully I can learn something from each episode.

Thanks all. Live and learn.
Countrymouse Feb 2019
Is the seat cold? You can get seat covers in washable fabrics, not that I'd personally dream of it :/

Any changes in vision so that it's looking scary to her, or she can't see what she might be sitting on? Can you do anything about the lighting?

I think you do already have a comfort height seat, haven't you, so there can't be any falling sensation.

It might *just* be worth having a discreet look at her perineal area in case there is a sore or scratched place that stings when she sits at that angle.

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OldSailor Feb 2019
My wife has FTD with asphasia. She can't tell me why she just resists sitting down even when I am helping her.
I can't put anything on top of the toilet as she is only 4'10" and barely reaches the floor when seated. I have built a short step for her to use so her feet can be flat on a sort of floor. That, in the past helped. And she is not like this constantly. I think it may be a phase but it re-occurs.
I am the only staff since she lives at home. We do have a visiting nurse, she is coming today along with the therapist. I will mention this to them. It will be interesting to find out what the books have to say. I am just looking for some one with direct experience. She did do this when she was in rehab and it seemed to just go away but the re-occurrance is starting to worry me. When ever she does sit down she will bend over almost double before she will sit. Actually it is more of a plop down.
I doubt that the addition of handles would help either because she will not reach back for any sort of arm on a seat to guide her. My being there seems to be of no comfort to the her. I am pretty sure she really does not fully realize that she needs to go and may need help.
Thank yo for your input and suggestions. For now I will just keep on keeping on.

cwillie Feb 2019
Do you think she would sit on a commode placed over the toilet? (I'm thinking of the kind that has a wide bench type seat)

Sunnygirl1 Feb 2019
Your profile says that your wife has Alzheimers which has caused dementia. My LO has a different condition (Vascular dementia), however, she became fully incontinent in a just a few weeks. With her, there didn't seem to be a fear of the toilet. It was just that she did not realize that she was using the bathroom or if she did, she could not process that it was happening. I think that the staff at her MC would put her on the toilet at designated times so she might use it, but, I'm not sure they still do that as she is end stage and cannot sit unassisted at all.

From my reading, one of the symptoms that occurs in the progression is becoming incontinent, so, I think it happen with most patients.

Eyerishlass Feb 2019
Is the toilet difficult for her to sit down on? Is it too low? You can get a raised toilet seat.

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