How do I deal with this?

Roseleigh

Registered User
Dec 26, 2016
347
0
There is a product called Conveen sheaths, which although I doubt could be used all the time, might be a short term solution.
I think the problem there would be just like pullups, these men are not truly incontinent, they know they want a pee, but their confusion is very like a drunk person any place which to them looks vaguely suitable will do. I visited a care home today and the manager told me they are often attracted by red, and will pee on the fire extinguishers. Such a horrible and degrading illness...
 

Roseleigh

Registered User
Dec 26, 2016
347
0
I have found incontinent pull ups useful as he needs more time to find penis. Am also thinking of getting a light for inside the toilet bow. Sounds terribly unhygienic but may work.

As others have said regular toilet breaks and noticing when he gets fidgety is best policy.
I sympathise with you thinking of care home - I am too.

Hi rhubarbtree,
I used a pullup last night, thinking the same and it remained dry, though he woke twice and I took him to the loo. Reading a bit on NHS continuing care I wonder if we may get it for this challenging stage of dementia
even if its lost later if they become less mobile. The manager at the CH I visited today said she thinks he really needs a specialist dementia facility.
 

rhubarbtree

Registered User
Jan 7, 2015
501
0
North West
Marvellous isn't it Roseleigh, we can deal with this day in day out, with no help offered, but a professional says PWD needs specialist care. Very much doubt if this behaviour would merit one point on the continuing care spectrum.

I did ask our doctor to put me in touch with Incontinence service. Form filled in about a month ago - no response as yet. We will have moved on to next stage, whatever that is, by the time they make contact.
 

Avis

Registered User
Nov 2, 2019
106
0
Thanks and to Sandra and JJ for your comments. I have kept it in check in the last few days by being super vigilant, toilet every two hours and up when I hear him get out of bed to ensure he goes to the loo.
This isnt a way to live though. Nor frankly is it a way to 'test' it, but I am worried for my lovely just two year old stair carpet!! :eek: I went to view a care home today and manager said she thinks he needs to be in a specialist dementia facility. She said that some also go on to defecate in inappropriate places.
What an awful illness this is...:(
Hi, My husband pees everywhere too. He wears pull ups and I have a "bluey" with a home made sheet over it as he wets the bed (despite the pull ups). He has MSA which is like Motor Neurone disease but you get dementia with it and has started undressing in the lounge room and defecating in the shower or all over the toilet. He gets it on the walls and all as his balance is poor. I am feeling very worn out with all the cleaning and constant vigilance. He refuses respite care.
 

Louise7

Volunteer Host
Mar 25, 2016
4,683
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I visited a care home today and the manager told me they are often attracted by red, and will pee on the fire extinguishers.

Having a white toilet seat on a white toilet does cause confusion for those with dementia, and red is easier to distinguish, hence lots of dementia equipment is red. When Mum was at home I bought a red toilet seat and that really helped her to know where to go as she seemed confused with regards to where the toilet was. In her care home the toilet seats are all blue or red - not white. If you haven't already tried a red toilet seat then it's worth a go and they're available from various stockists (I got one from B&Q for under £20)
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
Hi, My husband pees everywhere too. He wears pull ups and I have a "bluey" with a home made sheet over it as he wets the bed (despite the pull ups). He has MSA which is like Motor Neurone disease but you get dementia with it and has started undressing in the lounge room and defecating in the shower or all over the toilet. He gets it on the walls and all as his balance is poor. I am feeling very worn out with all the cleaning and constant vigilance. He refuses respite care.
I have seen many times on here that we all get to the stage where our OH's refusal of respite actually becomes 'need' rather than 'wishes' - and we make the decision for them. There is no respite around here,so that is not an issue, but I quite often tell him that the Dr has made whatever the decision might be - takes the blame off me.......
For example, he was riding his bike without helmet or lights, and then had a fall, so I took the opportunity of making that an excuse to take him to GP, who told him he must have a helmet and lights.. if you see what I mean.
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
Hi, My husband pees everywhere too. He wears pull ups and I have a "bluey" with a home made sheet over it as he wets the bed (despite the pull ups). He has MSA which is like Motor Neurone disease but you get dementia with it and has started undressing in the lounge room and defecating in the shower or all over the toilet. He gets it on the walls and all as his balance is poor. I am feeling very worn out with all the cleaning and constant vigilance. He refuses respite care.
Have you had a carers assessment? Have you thought about getting a care agency to help with all the cleaning etc - it will take some of the pressure off you.
 

dancer12

Registered User
Jan 9, 2017
498
0
Mississauga
Something I am quite unprepared for: tonight OH just randomly ******on front door mat! I have been mentally prepared for incontinence as he moves into more severe dementia, but he is not incontinent, his clothing was dry, he clearly just pulled his penis out and peed on the doormat. He realised afterwards he'd done wrong, but I just sense it will happen again. He is so confused.
How can one handle this problem since nappies are no solution? It's behavioural, and worse than urinary incontinence.
Hi Roseleigh:

I know exactly how you feel, my husband does the same thing only he wets his pants first, it's so hard to believe he doesn't do it on purpose just to annoy me. But I know he is so confused, my husband has done it in kitchen, on carpet, on stairs, in bedroom, on bed and the list goes on & on. I know ne doesn't know where he is most times, he doesn't know up from down anymore, his doctor says to put pictures on bathroom door but when you have to go you have to go & you don't have time to look at pictures on door. Wish I had some ideas for you but when it's the brain connections that are gone there's really not much you can do. Sending you much love, many cyber hugs & extra patience.
Take care.:):):):):):)
 
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Roseleigh

Registered User
Dec 26, 2016
347
0
Hi Roseleigh:

I know exactly how you feel, my husband does the same thing only he wets his pants first, it's so hard to believe he doesn't do it on purpose just to annoy me. But I know he is so confused, my husband has done it in kitchen, on carpet, on stairs, in bedroom, on bed and the list goes on & on. I know ne doesn't know where he is most times, he doesn't know up from down anymore, his doctor says to put pictures on bathroom door but when you have to go you have to go & you don't have time to look at pictures on door. Wish I had some ideas for you but when it's the brain connections that are gone there's really not much you can do. Sending you much love, many cyber hugs & extra patience.
Take care.:):):):):):)

Hi dancer, and thanks for your kind words. I too have put a toilet picture on door but am mostly just ensuring that I take him frequently. This is working at present but very exhausting to be on alert. I don't know how you cope when its combined with urge incontinence.:( Are you not tempted by care home?
Interesting you mention confusion over up/down as my hb is just the same we have a three storey house and he is always confused if I tell him tto go up or down stairs as well as pulling his trousers up or down.

He had a terrible night last night, up and down stairs until 4 am, being abusive and hallucinating ppl in the house as well as delusions about a long-not-visited relative planned meeting with him. :rolleyes:
In the end I went to bed leaving him in living room talking to mirror, praying that when I woke there'd be no breakages or puddles (which to my rellef there werent, light left on in loo may have worked}:rolleyes:
I think he will be exhausted tonight (I hope), he seems to have gone to sleep. Fingers crossed.
 

dancer12

Registered User
Jan 9, 2017
498
0
Mississauga
Hi dancer, and thanks for your kind words. I too have put a toilet picture on door but am mostly just ensuring that I take him frequently. This is working at present but very exhausting to be on alert. I don't know how you cope when its combined with urge incontinence.:( Are you not tempted by care home?
Interesting you mention confusion over up/down as my hb is just the same we have a three storey house and he is always confused if I tell him tto go up or down stairs as well as pulling his trousers up or down.

He had a terrible night last night, up and down stairs until 4 am, being abusive and hallucinating ppl in the house as well as delusions about a long-not-visited relative planned meeting with him. :rolleyes:
In the end I went to bed leaving him in living room talking to mirror, praying that when I woke there'd be no breakages or puddles (which to my rellef there werent, light left on in loo may have worked}:rolleyes:
I think he will be exhausted tonight (I hope), he seems to have gone to sleep. Fingers crossed.
Hi Rosseleigh:

Yes I have thought about a care home, many many times. I thought I could handle it but this bladder issue is just too much. I was hoping to keep him at home until he could no longer walk because he is bigger & stronger than me and I couldnt' carry him up & down stairs We have a back split house with 4-5 stairs leading up to each level (4 levels in total). This incontinence is too much, I don't know how some people do it, they must have a lot of patience. I guess it helps if they wear incontinence pads but he refuses to do it combined with his lack of understanding and confusion, it isn't easy. He keeps saying he didn't do it, it's always someone else. Sounds like you've got your hands full too. Always having to stay one step ahead of them is so stressful.
 

Linton

Registered User
Jul 27, 2019
166
0
Hi Roseleigh.. My OH has urge incontinence and struggled going to the loo so often... At night every hour.. Finally we found sheath cathatars.. The incontinence nurse came and showed us how they work.. The difference to life has been dramatic.. He has a leg bag during the day and a night bag during the night.. Of course I have to apply the sheath.. Something not everyone would be comfortable with.. But if you feel you could it solves all the problems you are experiencing... Hope you find this useful xxxxxx
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,415
0
Newcastle
It does sound unpleasant and using the washbasin afterwards may make you shudder even after a good clean. Sprayable toilet cleaner with bleach is useful. You may just have to learn to live with it. At least he is not stuffing faeces down the washbasin plughole as my wife used to do. That wasn't so easy to wash away but at least I had a separate basin in the shower room for my own use (and eventually had to lock the door to that room). It is a sadly familiar tale.
 

jenniferjean

Registered User
Apr 2, 2016
925
0
Basingstoke, Hampshire
I guess it helps if they wear incontinence pads but he refuses to
This makes me realise just how lucky I am. I bought pull-ups for my husband and called them his "posh pants" and he is so like a child that he just accepted them. I have to supervise him changing them and putting them on, but that's nothing compared to the problem others are having.
 

dancer12

Registered User
Jan 9, 2017
498
0
Mississauga
This makes me realise just how lucky I am. I bought pull-ups for my husband and called them his "posh pants" and he is so like a child that he just accepted them. I have to supervise him changing them and putting them on, but that's nothing compared to the problem others are having.
Hi jenniferjean:

Thanks for kind words, everybody has problems with this illness. I'm sure you have problems also. My husband is 50% child & 50% man. It breaks my heart thinking about what he must be going through. It's so sad but somehow we manage to muddle through one day at a time.

Thanks Much for kind words, we all have to support each other. Thanks to TP we can do that.
Have a terrific day.:)
 

Roseleigh

Registered User
Dec 26, 2016
347
0
It does sound unpleasant and using the washbasin afterwards may make you shudder even after a good clean. Sprayable toilet cleaner with bleach is useful. You may just have to learn to live with it. At least he is not stuffing faeces down the washbasin plughole as my wife used to do. That wasn't so easy to wash away but at least I had a separate basin in the shower room for my own use (and eventually had to lock the door to that room). It is a sadly familiar tale.
That's so grim. Do you think you struggled on too long? One care home manager told me he thought many people do.
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,415
0
Newcastle
That's so grim. Do you think you struggled on too long? One care home manager told me he thought many people do.

Yes I do and that is one reason that I am keen to emphasise that care homes can offer a much better option than struggling on alone. My wife is safer and better looked after now she is in her care home and I am less stressed. I miss her being here but in truth she wasn't here in any meaningful way for at least a year before she went into residential care.
 

Roseleigh

Registered User
Dec 26, 2016
347
0
Yes I do and that is one reason that I am keen to emphasise that care homes can offer a much better option than struggling on alone. My wife is safer and better looked after now she is in her care home and I am less stressed. I miss her being here but in truth she wasn't here in any meaningful way for at least a year before she went into residential care.
I am thinking this. Paid staff who can go home when their work is over are better placed to be patient than ground down family carers, plus CHs are set up with all the equipment they need for PWDs difficult needs.
The only thing theyre missing is more contact with family, but how aware are they of this? Who knows?
There is of course also the financial worry and what will happen when the money runs out. So much to think aboutt.
 

Justmary

Registered User
Jul 12, 2018
204
0
West Midlands
Yesterday I took OH out to see a film, all went well so I was feeling quite pleased with myself. When we got home the dishwasher was ready so I started emptying it and suggested that OH help me. I turned around for 1 minute, turned back to find him having a pee all over the clean dishes. Aarrgh!!!
( It's ok, you can have a laugh, now that I've calmed down I can see it's almost funny) But it will end one day won't it?