Not coping with his incontinence

[MrsExpo]

Not my finest moment, I know, so I'm here on an anonymous forum to get this off my chest. Apologies if this is too much information!!!

I have just been very unkind to my husband because of his increasingly bad incontinence. He has vascular dementia. The double incontinence is becoming increasingly difficult to manage and he's just had another "toilet incident" (his words!) which has resulted in me having to completely change our bed - duvet, sheets, pillow cases etc - for the third time in a week. He stood looking at the mess and asked what I wanted him to do. I just told him to go away! He's now watching TV as if nothing has happened. We have had visits from our excellent community continence nurse, who just provided pads (which he can't/won't use) and said it's a matter of management rather than cure.

I'm absolutely at my wits end with this situation. The relentless washing, bed changing, trying to get things dry, disposing of wet and dirty pads, getting him wash his hands (and other parts of his anatomy!) to at least try to be hygienic, is taking its toll on me as his carer. It's a daily battle. Last time this happened, I changed the duvet cover and it had a mess on it again before we had even slept in it for one night! (Sorry if that's too much information).

I can cope with other aspects of his dementia - the forgetfulness etc. But, can anyone offer any advice on how I might stop myself dissolving into a tearful, hysterical mess every time this happens. This, it seems, is the one thing that I just can't deal with.

 

[Nicknot]

I’ve had something similar so I do understand, my husband has not soiled the bed yet but twice has covered the whole of the bathroom floor and I’ve had to clean that and him up and throw away some of his clothes. It is sickening and hard work but He gets very upset and embarrassed so I say I’ve cleaned up after two children and three grandchildren I know what I’m doing don’t worry.
he wears Tena pull ups and now I go with him to the toilet help him undress from the waist down he does this because he doesn’t want to soil any more clothes and I tell him to keep his pull ups on till he gets to the toilet. Next I dress him again and I’m trying different foods such as dairy free, gluten free, it has made a difference. I haven’t had the bed problems that you have had but I imagine they will come.

 

[Reds]

Very difficult for you! My husband is incontinent usually just urine wise. If it was both I would want him to be in a care home. Perhaps keep a note of what is happening and the times. Separate beds are much better. Keep cleaning products including gloves and clean bedding in a quick easy reachable area.

Speak to your gp. Think about what he eats as could help.

Take some time out and think it's not happening all the time.

Best wishes,
Reds

 

[Janey B]

Hi Mrs Expo
Sorry I don’t think I can be of much help but I really feel for you 🤗
I too have had “ tantrums “ and really struggled with feacal incontinence.
I have to say I am getting better and have learnt easier ways of coping with the mess. My OH will wear pads and I have learnt to recognise the signs when he needs the toilet.
It is difficult and causes so much extra work. ( I still get stressed especially when he makes a mess)
We have gone into separate beds now as until a couple of weeks ago I needed to strip the bed completely every morning
( urinary incontinence) despite him wearing two pads!!! He was removing his pads during the night. I purchased a vest that has pants attached and now he can no longer have access to his pads and we have dry beds 😁
I hope things gets easier for you but you know some people just can’t cope with incontinence it’s nothing to be ashamed of JB

 

[phill]

I don’t know if you’ve already tried this, but changing to decaffeinated tea and decaffeinated coffee can help somewhat.

 

[Violet Jane]

Pull-ups might work better than pads. There are also sleep suits which do up at the back that prevent the person from removing their pull-ups. If urinary incontinence is the main issue then reducing fluids later in the day, switching to decaffeinated drinks and taking your husband to the toilet a couple of times before bedtime might help. If your husband accumulates fluid around his legs and ankles during the day then this fluid will return to the kidneys when he is lying down at night and, in turn, will leave the body as urine. Lying down during the day will help the fluid leave his body during the day leaving less to be expelled during the night. There is also medication which can reduce urine production at night.

There are leaflets about urinary incontinence which you can find online.

For some carers unmanageable incontinence is their line in the sand. There is nothing wrong in deciding that it is your line in the sand and that it's time for your husband to move into a care home. Adult incontinence without the cooperation of the person who is incontinent is exhausting and it can be very unpleasant living in a home which is repeatedly soiled, however fastidious you are.

 

[TobyandMonica]

Pull-ups might work better than pads. There are also sleep suits which do up at the back that prevent the person from removing their pull-ups. If urinary incontinence is the main issue then reducing fluids later in the day, switching to decaffeinated drinks and taking your husband to the toilet a couple of times before bedtime might help. If your husband accumulates fluid around his legs and ankles during the day then this fluid will return to the kidneys when he is lying down at night and, in turn, will leave the body as urine. Lying down during the day will help the fluid leave his body during the day leaving less to be expelled during the night. There is also medication which can reduce urine production at night.

There are leaflets about urinary incontinence which you can find online.

For some carers unmanageable incontinence is their line in the sand. There is nothing wrong in deciding that it is your line in the sand and that it's time for your husband to move into a care home. Adult incontinence without the cooperation of the person who is incontinent is exhausting and it can be very unpleasant living in a home which is repeatedly soiled, however fastidious you are.

Sorry to hear about this very challenging problem. I’d just like to add a couple of things to the thread. Single beds sound like a better option now and changing the bedding on a single bed would be at least a bit easier than on a double bed. Using disposable bed pads over the bottom sheet may catch some of the worst of the mess. When I was caring for my stepfather, the district nurses provided incontinence pads for him but they simply didn’t contain the mess and I found I needed to buy pull-ups online. It became difficult to get all the used incontinence products into our dustbin but, when I contacted the Council about this, they were able to provide a larger dustbin. I was fortunate to have a visiting carer to help with a lot of the incontinence issues. I now care for my husband. He has wet the floor a few times when unable to find the toilet in the middle of the night but I’ve been able to cope with that. Not at all sure I could cope with double incontinence - not single-handedly anyway.

 

[MrsExpo]

Thank you all for your kind and helpful thoughts. I'm saddened to hear that others are going through this too .... it really is the most challenging thing I've had to deal with on our journey so far, and I share your concerns.

To answer a few comments .... he is on de-caff coffee (won't drink tea) but is getting increasingly reluctant to drink anything (that's a whole other thread!). It seems that some things he eats do make matters worse, so I will definitely be giving that a lot more thought, although he seems to only want to eat rubbish - crisps, biscuits, sweets etc, and not proper food, in spite of my efforts to provide good quality meals.

I keep supplies of disposable gloves, and cleaning products (household and human) to hand, which helps. @TobyandMonica the dustbin issue is a real concern. I hadn't thought about getting a bigger bin .... thank you for that suggestion. I'll call the council on Monday and see if we can arrange something.

He wears Tena pull ups which do help, (Any recommendations for other brands welcome) and we have Kylie pads on the bed to try to absorb anything which leaks, but, of course, they do still need washing.

So, I'm doing my best to deal with things.

The thing which has shocked me most about this situation is my own emotional reaction to it. I'm a sensible, healthy woman in my 70's who has seen lot in life, including a long career in a healthcare setting, but this has really floored me! Thank you all again for your support.

 

[lollyc]

I too have really lost it over this. I'm not proud, but we are only human, not saints.

In my experience slips (like adult nappies) are more absorbent that pull-ups. Most incontinence websites should show the quantity of fluid that the products absorbs, so that you can compare brands etc. Although most use a "drops" rating, I'm not sure that that is a consistent measure i.e Tena 8 drops may absorb less than Vivactive 5 drops. As @Violet Jane suggests a sleep suit, like this: https://specialkids.company/collections/adult-zip-back-jumpsuits-sleepsuits?grid_list=grid-view
may help.
My council took 6 weeks to action getting a larger bin (might have helped if any of the professionals we saw had told us about this...), but you can request special bags (purple in our area) that you put the excess in and the refuse collectors will take in addition to your full bin.

 

[maisiecat]

Hi @MrsExpo, faecal incotinence is a really horrific thing to deal with. I was a Nurse for 30 years but wilted under my husband using cereal bowls to defecate into. Every morning he would show me where there were lumps of faeces on the carpet.
I definitely agree that you need to have a change to single beds as washing the bedding is so much easier. Do you have a morning carer who can help with you the first clear up.
My husband is now in a Nursing Home he is now continent again both day and night. He has vascular dementia as well as parkinsons dementia. I wonder if the faecal incontinence is a phase in vascular dementia.

 

[genevieve 76]

I totally understand how you feel, husband has been bedridden and doubly incontinent for over a year, he won't keep pads on. Throws fully soiled ones on floor and touches everything in his reach with dirty hands, pillows, bedguard, walls. Single beds would help or even separate rooms so at least you would be able to sleep. I use small disposable sheets on top of kylie sheets and they take the worst of it, I had to throw away a few kylie sheets because I didn't want to put them in washer. You can buy waterproof duvet covers which help, then normal cover on top so you only have to wash that one and it doesn't go through to duvet. Some days are so bad I'm not sure I can carry on so you are not alone. We've had 3 really bad weeks and I managed to talk to his doc and got told to give him imodium to calm things down for a bit. This might make you smile it seems funny now but I cried for ten minutes before I could clean up. He sometimes shouts through the night about being cold so I gave him a hot water bottle, when I got up there was poo everywhere but he had decided to help by emptying the hot water bottle all over the bed to clean up. He was lucky water wasn't too hot so that's another thing he'll have to do without. Hope you have a better night.

 

[lollyc]

I totally understand how you feel, husband has been bedridden and doubly incontinent for over a year, he won't keep pads on. Throws fully soiled ones on floor and touches everything in his reach with dirty hands, pillows, bedguard, walls. Single beds would help or even separate rooms so at least you would be able to sleep. I use small disposable sheets on top of kylie sheets and they take the worst of it, I had to throw away a few kylie sheets because I didn't want to put them in washer. You can buy waterproof duvet covers which help, then normal cover on top so you only have to wash that one and it doesn't go through to duvet. Some days are so bad I'm not sure I can carry on so you are not alone. We've had 3 really bad weeks and I managed to talk to his doc and got told to give him imodium to calm things down for a bit. This might make you smile it seems funny now but I cried for ten minutes before I could clean up. He sometimes shouts through the night about being cold so I gave him a hot water bottle, when I got up there was poo everywhere but he had decided to help by emptying the hot water bottle all over the bed to clean up. He was lucky water wasn't too hot so that's another thing he'll have to do without. Hope you have a better night.

@genevieve 76 have you tried one of the sleep suits to stop him removing the pad? Never got the point of using them myself, fortunately, but I think others here have found them useful.

 

[TobyandMonica]

Thank you all for your kind and helpful thoughts. I'm saddened to hear that others are going through this too .... it really is the most challenging thing I've had to deal with on our journey so far, and I share your concerns.

To answer a few comments .... he is on de-caff coffee (won't drink tea) but is getting increasingly reluctant to drink anything (that's a whole other thread!). It seems that some things he eats do make matters worse, so I will definitely be giving that a lot more thought, although he seems to only want to eat rubbish - crisps, biscuits, sweets etc, and not proper food, in spite of my efforts to provide good quality meals.

I keep supplies of disposable gloves, and cleaning products (household and human) to hand, which helps. @TobyandMonica the dustbin issue is a real concern. I hadn't thought about getting a bigger bin .... thank you for that suggestion. I'll call the council on Monday and see if we can arrange something.

He wears Tena pull ups which do help, (Any recommendations for other brands welcome) and we have Kylie pads on the bed to try to absorb anything which leaks, but, of course, they do still need washing.

So, I'm doing my best to deal with things.

The thing which has shocked me most about this situation is my own emotional reaction to it. I'm a sensible, healthy woman in my 70's who has seen lot in life, including a long career in a healthcare setting, but this has really floored me! Thank you all again for your support.

You asked for any suggestions on brands to try. For my stepfather, we used Readi disposable incontinence bed pads to protect the bottom sheet. We also tried a range of pants - iD pants, Lille Healthcare Suprem pull up pants and Attends pull ons. As someone else has already mentioned, these products come with absorbency ratings and some claim to be anti-leakage. From memory, I think we settled with the Suprem ones in the end - with a Super absorbency rating. We also used Conti soft large wipes and large Professional Care wipes. We used Abri-Bag zip bags to seal up used incontinence products before putting them in the bin.

There are online incontinence shops which should be able to advise. Allanda produce a Carer’s Guide on how to manage incontinence at home and while travelling. There’s also the supplier AgeUK Incontinence that might be helpful.

Again, as someone else has said, getting a part-time carer in to help with some of the cleaning up and laundry might help take some of the pressure off you. They don’t have the same emotional involvement with the situation and just get on with the job.

Hopefully you have a washable floor covering in the bedroom, not carpet.

 

[Chizz]

Hi @MrsExpo
In my case, my OH is now bedbound and non-weight bearing. Although she's not incontinent (in the muscle power point of view), she's as good as, because she can't get to a toilet or commode.
The Incontinence Nurse pas prescribed adult nappies (and said she always recommends a size larger than you think and then they stay on better and give a fuller wrap-around cover), plus absorbent bed cover pads (about 60/70cm x 90/100cm), plus nappy bags, and the hospital-type stretchy net knickers to go over the nappy. The supplier issues a "client number" and when a new lot is needed I phone or email a week ahead and the next three months' supply arrives in huge boxes to stack up!
Yes, we still have leakages and therefore washing required for sheets, blankets, bedwear, etc but less than might otherwise be the case.
Best wishes

 

[Jerseygirl]

Hello. I wanted to add about the dustbin issue. My council suggested putting my name for their Clinical Waste collection so i put the pants in the yellow sacks they provide and leave out once a fortnight for collection. It may be worth asking your council if they do this.

 

[Chizz]

My Council say they only have clinical waste collections for GP and Dentists surgeries and/or clinics.

 

[lollyc]

I was told they were OK in normal rubbish (just like babies nappies), but the issue was the sheer quantity. The very much larger bin was more than adequate for our needs, although I used washable bed protectors, not disposable. It would now take me about 6 weeks to fill it my just my waste!

 

[Chizz]

I was told they were OK in normal rubbish (just like babies nappies), but the issue was the sheer quantity. The very much larger bin was more than adequate for our needs, although I used washable bed protectors, not disposable. It would now take me about 6 weeks to fill it my just my waste!

Hi @lollyc - there's no hurry ! 😄😄

 

[lollyc]

Hi @lollyc - there's no hurry ! 😄😄

No! At least if I forget to put it out for collection it doesn't matter

 

[genevieve 76]

@genevieve 76 have you tried one of the sleep suits to stop him removing the pad? Never got the point of using them myself, fortunately, but I think others here have found them useful.

Hi, a couple of people have recommended the sleeping suits and I have thought about it but as he can't sit or stand I'm not sure how difficult they would be to put on, one side is completely paralysed and its a wrestling match to even put a tshirt on him, then an hour later he wants it off, at the moment he is lying on his back one foot in the air trying to put on the sock he's just pulled off, well its keeping him amused while I have a coffee 😀