Toileting.

[Avis]

My OH seems to have toilet fixation today. He has been at least 14 times today, most of the time without actually using the loo. He cannot undo or do up his clothing so when he goes I must drop everything and help him. I am beginning to wonder if it is not just a way to get my attention. It is like having a 75kg toddler and my patience is wearing quite thin at the moment.

 

[nae sporran]

My partner is not as bad as that, but there have been days where she goes to the toilet for an hour and then says nothing is happening after doing that a few times over a couple of days. She suffers with bowel constipation and the two seem to be linked. Is it possible your OH is suffering the same sort of thing @Avis.

 

[Sunshine2*]

Hello... The same happens to my husband. Visits the toilet around 10 times a day for around 20 minutes each time. “Only wind” he says. Occasionally, he will have a poo accident, the other day he was eating lunch at the dining table and it happened. He is disabled too with the MS and MS Dementia and it is difficult to get him all cleaned up again. We’ve had poo up the stairs and most rooms. I don’t think the messages are getting through to when he needs to go. He has a good healthy diet and fluids, but won’t wear the disposable pull-up pants I bought him. At least he has an indwelling catheter now, so he’s not needing a wee every ten minutes (although he still reckons he’s had one in the toilet). I empty his leg bag during the day and attach his night bag. He’s getting confused as to where he is and where family are, but that’s another story... Thirty years of various illnesses and he’s still only in his fifties.

 

[ShrinkingViolet]

My OH seems to have toilet fixation today. He has been at least 14 times today, most of the time without actually using the loo. He cannot undo or do up his clothing so when he goes I must drop everything and help him. I am beginning to wonder if it is not just a way to get my attention. It is like having a 75kg toddler and my patience is wearing quite thin at the moment.

My mother went through this for about a year - yes it's horribly frustrating not to mention exhausting for the carer(s). It may not be anything like the same situation but I thought it worth sharing my experience with you.

We got my mother tested for UTIs innumerable times because she would ask for the toilet 10 times in a single hour, day in and day out - I think on some level she knew she was losing the ability to control herself and was just on a loop to go to the toilet all the time. When she got to the loo she'd often ask for instructions on what to do and then, when you finally got her to sit down, she rarely produced anything. However that was preferable to the times we'd get there and she'd already 'produced'.

Gradually she completely lost the ability to cope in the toilet - I well remember handing her a piece of toilet paper and she ate it because she'd forgotten what it was. She lost control of her bowels before her bladder and now wears adult incontinence pads all the time.

This journey is so hard for all of us - PWD and carers, relatives, friends. I hope you find answers.

 

[Shedrech]

hi @Avis
not directly helpful maybe, but might you simplify your husband's clothing
it helped dad, for a while, when we changed his trousers, with flies, to easy pull-ups (M&S had some smart ones and most outlets have jogging pants etc) and boxer shorts underneath ... we also moved away from shirts, which seem to all have small buttons, to nice Tshirts or polo style

 

[Avis]

My partner is not as bad as that, but there have been days where she goes to the toilet for an hour and then says nothing is happening after doing that a few times over a couple of days. She suffers with bowel constipation and the two seem to be linked. Is it possible your OH is suffering the same sort of thing @Avis.

Thank you for replying to me. My OH is fine in the constipation department, in fact he is often very messy in this regard but he does complain that the toilet is not working when he gets there and can't go. It is all very frustrating. Best wishes to you.

 

[Avis]

My mother went through this for about a year - yes it's horribly frustrating not to mention exhausting for the carer(s). It may not be anything like the same situation but I thought it worth sharing my experience with you.

We got my mother tested for UTIs innumerable times because she would ask for the toilet 10 times in a single hour, day in and day out - I think on some level she knew she was losing the ability to control herself and was just on a loop to go to the toilet all the time. When she got to the loo she'd often ask for instructions on what to do and then, when you finally got her to sit down, she rarely produced anything. However that was preferable to the times we'd get there and she'd already 'produced'.

Gradually she completely lost the ability to cope in the toilet - I well remember handing her a piece of toilet paper and she ate it because she'd forgotten what it was. She lost control of her bowels before her bladder and now wears adult incontinence pads all the time.

This journey is so hard for all of us - PWD and carers, relatives, friends. I hope you find answers.

I am afraid my OH is headed in the same direction as he thinks the toilet is responsible if he can't go. I have to give him instructions sometimes too, take off you pants, pull down the pull-ups etc. He was such private, independent person before; it breaks your heart.

 

[Avis]

Hello... The same happens to my husband. Visits the toilet around 10 times a day for around 20 minutes each time. “Only wind” he says. Occasionally, he will have a poo accident, the other day he was eating lunch at the dining table and it happened. He is disabled too with the MS and MS Dementia and it is difficult to get him all cleaned up again. We’ve had poo up the stairs and most rooms. I don’t think the messages are getting through to when he needs to go. He has a good healthy diet and fluids, but won’t wear the disposable pull-up pants I bought him. At least he has an indwelling catheter now, so he’s not needing a wee every ten minutes (although he still reckons he’s had one in the toilet). I empty his leg bag during the day and attach his night bag. He’s getting confused as to where he is and where family are, but that’s another story... Thirty years of various illnesses and he’s still only in his fifties.

We have had the poo incidents too with it all over the wall, in the shower, over the toilet seat - and it is never him that does it. Unlike your man mine was never ill until he got MSA. He uses a wheelchair (I should say I use it to move him) when we go out and he can't use a walker because he falls over too much even with it or a frame. He is so weak he can't even cut his dinner up. I guess our future is a Care Home as I am getting Parkinsons. We have been together 53 years. It is sad to see him like this. I will be thinking of you as we both struggle on.

 

[Avis]

hi @Avis
not directly helpful maybe, but might you simplify your husband's clothing
it helped dad, for a while, when we changed his trousers, with flies, to easy pull-ups (M&S had some smart ones and most outlets have jogging pants etc) and boxer shorts underneath ... we also moved away from shirts, which seem to all have small buttons, to nice Tshirts or polo style

I have already done this for my OH and he still has trouble. He won't wear polos and T-shirts so I have to dress him and undress him each day. I have some nice jeans with elastic tops that he likes but he doesn't have the strength to pull them over his pull ups. It is such a challenge isn't it.