Terrified of using the toilet

[Diannie]

my husband diagnosed with Alzheimer’s 6 years ago has been in a Care home for a year. Approximately 2 months ago he developed a fear of sitting on the toilet. He panics and fights any attempts to coax or help him. He refuses to bend his legs or move backwards. They tried a raised toilet seat. He now has a Mowbray which has a seat with a frame round. Nothing is working at the moment. Is this fairly common in later stage?

 

[LynneMcV]

Hi @Dianne, I am sorry that your husband is going through this and that you have this extra worry.

I don't know how common it is, but it is definitely something that happened to my husband too.

It seemed to be triggered by fear of falling as he was unable to understand how far he needed to bend in order to sit down.

A raised toilet seat (red) helped for a while - but eventually even that was no real help.

Like your husband, my husband would fight against all coaxing to get him seated on the toilet, his legs would stiffen and his whole body would become rigid and he would cry out in fear. I tried him with a commode, but he fought against that as well.

Even if I did manage to seat him, he would be fighting to get off the commode/toilet within seconds.

Fairly soon after this, he began to lose control of his bowel motions and so we moved him to pull-ups which removed him from a very stressful situation. It helped that, by this stage, he had lost any self-consciousness about using pull-ups.

Having said that, even in pull-ups, he was still happy to use a portable urinal when it came to having a wee, as it didn't involve him sitting on a toilet.

We maintained this situation for a few months but eventually he became doubly incontinent as his condition worsened.

 

[Diannie]

Hi @Dianne, I am sorry that your husband is going through this and that you have this extra worry.

I don't know how common it is, but it is definitely something that happened to my husband too.

It seemed to be triggered by fear of falling as he was unable to understand how far he needed to bend in order to sit down.

A raised toilet seat (red) helped for a while - but eventually even that was no real help.

Like your husband, my husband would fight against all coaxing to get him seated on the toilet, his legs would stiffen and his whole body would become rigid and he would cry out in fear. I tried him with a commode, but he fought against that as well.

Even if I did manage to seat him, he would be fighting to get off the commode/toilet within seconds.

Fairly soon after this, he began to lose control of his bowel motions and so we moved him to pull-ups which removed him from a very stressful situation. It helped that, by this stage, he had lost any self-consciousness about using pull-ups.

Having said that, even in pull-ups, he was still happy to use a portable urinal when it came to having a wee, as it didn't involve him sitting on a toilet.

We maintained this situation for a few months but eventually he became doubly incontinent as his condition worsened.

Thank you for your reply LynneMcV. Unfortunately my husband is now doubly incontinent. I really thought the framed seat would help because he had been able to use one in the care home.but he was not able to use it regularly until he had been assessed by OT. By the time the assessment came through he had reached the stage when he felt unable to use it. I don’t know where they will go from here with it

 

[Casbow]

It was said a few years ago that white was frightening for people with dementia. I had the same thing with my husband . But he went into a nursing home before I could try coloured sticky back plastic (or similar) on the toilet seat. I mentioned this to the care home but no one acknowledged it.x

 

[nitram]

I had this problem with my late wife.
In the day centre it was quite often solved by a carer each side holding her hands and saying 'let's all sit down'

My personal research came up with:
Sit on toilet taking knickers down - no
Sit on toilet with knickers up - yes
Same result when sitting on chair.

Solved by experience. going to the toilet nude - after/before a shower or because long time since went and completely undressing away from the toilet.