Toilet habits

[Dosey]

Hi
I am new to this forum

Looking for some advice. I having being looking after my husband who was diagnosed with Alzheimer's at 55. This was 5 plus years ago. His condition Has deteriorated in the last few months. He is now struggling with using the toilet. He is now using the shower to do a poo. I have tried to get him to use the toilet, but he ends up covered in poo over his hands.
Has anyone else experienced this and any advice please. I am at my wits end with this

 

[Julia4]

Hi Dosey I see your up at gone 2 in the morning as well, I don't have any advice for your predicament, I know what it's like, I found myself wishing for a bit more deterioration so they don't have the urge to go on the toilet, if it's all contained in their pad its easier for me to deal with, then the guilt of wishing they were further down the line, hits home. Take care x

 

[LynneMcV]

Hi Dosey and welcome to the forum.

I don't have any concrete answers for you but just wanted to say that I am going through something similar.

My husband was diagnosed at 58, also 5+ years ago, and in recent weeks there have been toilet accidents in as far as there are days when he does not understand how to sit on the toilet, or he is standing to do a wee in the portable urinal but opens his bowels instead.

I have accompanied him to the loo for at least three years now - otherwise he would have been getting into a mess a long time ago. I clean him up after a bowel motion otherwise he would get it all over his hands and everything within reach because he lacks the co-ordination and understanding of how to clean himself.

The only way I am currently able to contain him is to have a container/bowl to hand when I am helping him in the loo. That way if he starts to poo while I am holding the urinal, I grab it quickly and shove it on the floor in the most likely place that the pooh will drop. As I say, this is a very recent development and I've only had to do this three times, but at least it works for now.

The first time it happened the situation caught me completely off guard and there was a lot of clearing up to do. I am just glad I was there because there would have been a bigger mess to clear up if he'd been alone.

I'm also always on hand when he takes a shower. This has become less frequent in recent weeks as he struggles to get in and out the bath (we have an over the bath shower) but now that he has started not quite knowing where he is or what he is about to do in the loo, I will make sure that I have a suitable receptacle to hand while he is showering, just in case he starts to do a pooh in there too.

Although my husband has not done that yet, it definitely is not unheard of. My friend's husband, who is also around five years into his diagnosis, has regularly being opening his bowels in the shower for over a year. She is at her wits end as they are an elderly couple and she struggles greatly to clean it up as she is in great pain with arthritis. She relies on a friend to come in as clean the shower for her.

None of that helps you of course, I just wanted to let you know that it is a known problem which arises - not for everyone, but not unheard of.

I am preparing myself for the fact that we are heading towards incontinence wear, but for now we are getting by as best we can with me being constantly on hand when my husband needs the toilet.

I really can't see any other way of managing it other than physically guiding him to the toilet and overseeing things. Fortunately he has always been in a routine of going to the loo before attempting anything else such as showering.

My heart goes out to you, it isn't easy to accept or deal with.

 

[LadyA]

This stage is never easy, and @Julia4 , you need feel no guilt at wishing for a particularly difficult stage to pass, even knowing that it does mean a deterioration in the condition. Caring for someone with dementia is far from easy, and with little help or support, I'm sure we've all, at some stage, wished a particular stage would pass. It's not that we want the person deteriorating more quickly, or we want them "gone" sooner. Some stages are very distressing for the person with dementia too, as they know there is something not right, and we know how terribly mortified and upset they would be if they knew completely what they were doing. I think of the time I met my late husband heading out the back door obviously carrying something in his hand. I asked him where he was going, and he looked a bit sheepish, and said "Wouldn't go away. I didn't know what to do with this." and handed me a very large poo! Apparently, it hadn't disappeared when he flushed, so he fished it back out, and was going to hide it! So, yes, I wished for that stage to pass.

As regards going in the shower, @LynneMcV , has your friend tried using one of the lightweight commodes as a shower stool? If her husband was sitting on that as he was showered, he might just go in the commode? Or, just put something like a puppy training pad on the floor of the shower stall, which can be easily gathered up into a bucket and dumped, without having to do lots of cleaning?

 

[LynneMcV]

Thanks @LadyA ,

I don't think she has tried either of those options but I will mention them when I see her this week.

I think their problem is compounded by the fact that she is in her 80s and struggles hugely with pain and mobility while her husband, although also in his 80s, is very mobile, so she can't keep on top of things. They did organise a carer to come in for the morning shower to oversee toileting and showering but the carer was arriving later than needed, so the accidents continued to happen as there was only so long that the poor chap could cross his legs! They ended up cancelling the carer.

I am not sure how safe he would be in the shower, unsupervised (his wife is unable to take that task on) if there was a commode or pad on shower floor to negotiate too.

It is one of those hurdles faced when both the cared for and the carer are elderly. It might be something that @Dosey could benefit from in her situation though.

 

[Dosey]

Is this a common issue at a certain stage. We do not qualify for any free help due to my husband being under 65. Can't get carers allowance as I work. Now on the sick due to the stress as he needs 24 hour care. Family were helping out while I was at work but he didn't want any of our 4 sons in the house causing him more stress. Money is tight and can't afford to pay for carers. Plan is for family to come in and give me some respite to see friends. I am working in a care home with children so going to work was really stressful. Caring 24/7 no time for me. Thinking of giving up work. I am only 60 so no pension until. 66. Don't know what fi any help I will get if any.

 

[Dosey]

Hi Dosey and welcome to the forum.

I don't have any concrete answers for you but just wanted to say that I am going through something similar.

My husband was diagnosed at 58, also 5+ years ago, and in recent weeks there have been toilet accidents in as far as there are days when he does not understand how to sit on the toilet, or he is standing to do a wee in the portable urinal but opens his bowels instead.

I have accompanied him to the loo for at least three years now - otherwise he would have been getting into a mess a long time ago. I clean him up after a bowel motion otherwise he would get it all over his hands and everything within reach because he lacks the co-ordination and understanding of how to clean himself.

The only way I am currently able to contain him is to have a container/bowl to hand when I am helping him in the loo. That way if he starts to poo while I am holding the urinal, I grab it quickly and shove it on the floor in the most likely place that the pooh will drop. As I say, this is a very recent development and I've only had to do this three times, but at least it works for now.

The first time it happened the situation caught me completely off guard and there was a lot of clearing up to do. I am just glad I was there because there would have been a bigger mess to clear up if he'd been alone.

I'm also always on hand when he takes a shower. This has become less frequent in recent weeks as he struggles to get in and out the bath (we have an over the bath shower) but now that he has started not quite knowing where he is or what he is about to do in the loo, I will make sure that I have a suitable receptacle to hand while he is showering, just in case he starts to do a pooh in there too.

Although my husband has not done that yet, it definitely is not unheard of. My friend's husband, who is also around five years into his diagnosis, has regularly being opening his bowels in the shower for over a year. She is at her wits end as they are an elderly couple and she struggles greatly to clean it up as she is in great pain with arthritis. She relies on a friend to come in as clean the shower for her.

None of that helps you of course, I just wanted to let you know that it is a known problem which arises - not for everyone, but not unheard of.

I am preparing myself for the fact that we are heading towards incontinence wear, but for now we are getting by as best we can with me being constantly on hand when my husband needs the toilet.

I really can't see any other way of managing it other than physically guiding him to the toilet and overseeing things. Fortunately he has always been in a routine of going to the loo before attempting anything else such as showering.

My heart goes out to you, it isn't easy to accept or deal with.

Thank you for your reply. I know I should try not to lose it with him. I put him on the toilet and he doesn't go. He then goes in the shower(over the bath) and starts to push and pull at his bottom. I ask hi why he can't use the toilet, he gets annoyed and says this is the way I do it. It's not his fault. I am off work now with stress and clinical depression. Caring has taken its toll on me. Don't know how long this stage will last.

Hi Dosey and welcome to the forum.

I don't have any concrete answers for you but just wanted to say that I am going through something similar.

My husband was diagnosed at 58, also 5+ years ago, and in recent weeks there have been toilet accidents in as far as there are days when he does not understand how to sit on the toilet, or he is standing to do a wee in the portable urinal but opens his bowels instead.

I have accompanied him to the loo for at least three years now - otherwise he would have been getting into a mess a long time ago. I clean him up after a bowel motion otherwise he would get it all over his hands and everything within reach because he lacks the co-ordination and understanding of how to clean himself.

The only way I am currently able to contain him is to have a container/bowl to hand when I am helping him in the loo. That way if he starts to poo while I am holding the urinal, I grab it quickly and shove it on the floor in the most likely place that the pooh will drop. As I say, this is a very recent development and I've only had to do this three times, but at least it works for now.

The first time it happened the situation caught me completely off guard and there was a lot of clearing up to do. I am just glad I was there because there would have been a bigger mess to clear up if he'd been alone.

I'm also always on hand when he takes a shower. This has become less frequent in recent weeks as he struggles to get in and out the bath (we have an over the bath shower) but now that he has started not quite knowing where he is or what he is about to do in the loo, I will make sure that I have a suitable receptacle to hand while he is showering, just in case he starts to do a pooh in there too.

Although my husband has not done that yet, it definitely is not unheard of. My friend's husband, who is also around five years into his diagnosis, has regularly being opening his bowels in the shower for over a year. She is at her wits end as they are an elderly couple and she struggles greatly to clean it up as she is in great pain with arthritis. She relies on a friend to come in as clean the shower for her.

None of that helps you of course, I just wanted to let you know that it is a known problem which arises - not for everyone, but not unheard of.

I am preparing myself for the fact that we are heading towards incontinence wear, but for now we are getting by as best we can with me being constantly on hand when my husband needs the toilet.

I really can't see any other way of managing it other than physically guiding him to the toilet and overseeing things. Fortunately he has always been in a routine of going to the loo before attempting anything else such as showering.

My heart goes out to you, it isn't easy to accept or deal with.

Hi Dosey and welcome to the forum.

I don't have any concrete answers for you but just wanted to say that I am going through something similar.

My husband was diagnosed at 58, also 5+ years ago, and in recent weeks there have been toilet accidents in as far as there are days when he does not understand how to sit on the toilet, or he is standing to do a wee in the portable urinal but opens his bowels instead.

I have accompanied him to the loo for at least three years now - otherwise he would have been getting into a mess a long time ago. I clean him up after a bowel motion otherwise he would get it all over his hands and everything within reach because he lacks the co-ordination and understanding of how to clean himself.

The only way I am currently able to contain him is to have a container/bowl to hand when I am helping him in the loo. That way if he starts to poo while I am holding the urinal, I grab it quickly and shove it on the floor in the most likely place that the pooh will drop. As I say, this is a very recent development and I've only had to do this three times, but at least it works for now.

The first time it happened the situation caught me completely off guard and there was a lot of clearing up to do. I am just glad I was there because there would have been a bigger mess to clear up if he'd been alone.

I'm also always on hand when he takes a shower. This has become less frequent in recent weeks as he struggles to get in and out the bath (we have an over the bath shower) but now that he has started not quite knowing where he is or what he is about to do in the loo, I will make sure that I have a suitable receptacle to hand while he is showering, just in case he starts to do a pooh in there too.

Although my husband has not done that yet, it definitely is not unheard of. My friend's husband, who is also around five years into his diagnosis, has regularly being opening his bowels in the shower for over a year. She is at her wits end as they are an elderly couple and she struggles greatly to clean it up as she is in great pain with arthritis. She relies on a friend to come in as clean the shower for her.

None of that helps you of course, I just wanted to let you know that it is a known problem which arises - not for everyone, but not unheard of.

I am preparing myself for the fact that we are heading towards incontinence wear, but for now we are getting by as best we can with me being constantly on hand when my husband needs the toilet.

I really can't see any other way of managing it other than physically guiding him to the toilet and overseeing things. Fortunately he has always been in a routine of going to the loo before attempting anything else such as showering.

My heart goes out to you, it isn't easy to accept or deal with.

 

[Dosey]

Hi Dosey I see your up at gone 2 in the morning as well, I don't have any advice for your predicament, I know what it's like, I found myself wishing for a bit more deterioration so they don't have the urge to go on the toilet, if it's all contained in their pad its easier for me to deal with, then the guilt of wishing they were further down the line, hits home. Take care x

Hi Dosey I see your up at gone 2 in the morning as well, I don't have any advice for your predicament, I know what it's like, I found myself wishing for a bit more deterioration so they don't have the urge to go on the toilet, if it's all contained in their pad its easier for me to deal with, then the guilt of wishing they were further down the line, hits home. Take care x

Hi Dosey I see your up at gone 2 in the morning as well, I don't have any advice for your predicament, I know what it's like, I found myself wishing for a bit more deterioration so they don't have the urge to go on the toilet, if it's all contained in their pad its easier for me to deal with, then the guilt of wishing they were further down the line, hits home. Take care x

Hi Dosey I see your up at gone 2 in the morning as well, I don't have any advice for your predicament, I know what it's like, I found myself wishing for a bit more deterioration so they don't have the urge to go on the toilet, if it's all contained in their pad its easier for me to deal with, then the guilt of wishing they were further down the line, hits home. Take care x

 

[Dosey]

Yes I am lying wide awake. Hubby has a bad cough keeping us both awake most of the night. Need to call GP in morning as he has had it 2 weeks now cough bottle from minor ailments not helped.

 

[Tin]

Sometimes this happens to my mum. We don't have a walk in shower, just an adaptor for the bath taps and like someone else has mentioned, I have a plastic container to hand - a very old, but big plastic measuring jug with a handle -very important for me!

To be blunt, I can see when something is coming and manage to get the jug in position just in time. In a strange way, I prefer this way because my mum nearly always will not sit on the toilet and so the mess on the floor is hard to clean up. I now have a second commode in the bathroom and she does use this, but sometimes a shower seems to set off a bowel movement.

 

[Dosey]

Thanks for all your replies and suggestions.

 

[Glofaxi]

My mum fell down on Sunday. District Nurse came yesterday and we talked about recent deterioration.
When I started a similar thread called “Irritating” about Mum’s toilet habits, I’d no idea things could get as bad as some of you are experiencing. I couldn't cope. I have a physical disability myself. So what next?

 

[SnowWhite]

Is this a common issue at a certain stage. We do not qualify for any free help due to my husband being under 65. Can't get carers allowance as I work. Now on the sick due to the stress as he needs 24 hour care. Family were helping out while I was at work but he didn't want any of our 4 sons in the house causing him more stress. Money is tight and can't afford to pay for carers. Plan is for family to come in and give me some respite to see friends. I am working in a care home with children so going to work was really stressful. Caring 24/7 no time for me. Thinking of giving up work. I am only 60 so no pension until. 66. Don't know what fi any help I will get if any.

Isn't your husband entitled to Attendance Allowance and you to Carers Allowance?

It must be very hard for you. Xx.

 

[Beate]

Isn't your husband entitled to Attendance Allowance and you to Carers Allowance?

It must be very hard for you. Xx.

I think she's just explained that. AA is for the over 60s and you can't get CA if you earn more than £116 a week after tax.

There are other benefits for the under 60 though - have you looked into them?

Plus, Social Services should give you a carers assessment no matter how old you both are. And his finances will be assssed not yours, so if he can't afford carers, they should help with that.

 

[Dosey]

I think she's just explained that. AA is for the over 60s and you can't get CA if you earn more than £116 a week after tax.

There are other benefits for the under 60 though - have you looked into them?

Plus, Social Services should give you a carers assessment no matter how old you both are. And his finances will be assssed not yours, so if he can't afford carers, they should help with that.

We are awaiting an assessment from social work. Thanks for all your help x

 

[LizK]

I too suffered from my husband doing this. I found faeces in the sink, in food recycling, in potpourri and on my towels and flannel. In fact all around the house. If he did manage to do it on the loo, he would sometimes get up still defaecating and step in it. The most difficult part was afterwards he wouldn't let me put his hands under the shower attachment or in a basin of water. As far as urinating went, I found it in a waste paper basket, but also he would do it on the carpet and once in BHS. This started in the September and by the April he was in a nursing home. He was also violent, and the two together was a step too far for me.

 

[Glofaxi]

@LizK you did very well to put up with that. I’m afraid I don’t think I’d have lasted as long so well done you. Well done you x 1000.
Makes my complaints seem trivial. What an awful shame. What a hideous disease.

 

[LizK]

Thank you Glofaxi. Just to add he's still doing it in the nursing home 20 months on.

 

[Dosey]

I too suffered from my husband doing this. I found faeces in the sink, in food recycling, in potpourri and on my towels and flannel. In fact all around the house. If he did manage to do it on the loo, he would sometimes get up still defaecating and step in it. The most difficult part was afterwards he wouldn't let me put his hands under the shower attachment or in a basin of water. As far as urinating went, I found it in a waste paper basket, but also he would do it on the carpet and once in BHS. This started in the September and by the April he was in a nursing home. He was also violent, and the two together was a step too far for me.

Sorry to here your husband had to go into care.

I am now being wakened every hour during the night with him going to the toilet to urinate. Poo issue is still going on too.