Continence problem is so tedious

[Reds]

Just a rant. Feel very sorry for my husband who is incontinent, however I do find the regular changing of pull up pants tedious everyday as three or four times. His incontinence tends to annoy me too but I do try and accept the situation as know he can't help it, still find myself wishing it would stop. I find it depressing and worry about hygiene. I know its the illness but I'm not sure if he helps himself to make things easier. I do wonder if he can't be bothered to use the loo sometimes now that he wears the incontinence pants and this then makes me feel resentment towards him.

I ask him to use the loo but this becomes tedious too and doesn't always work. I also say to keep his chair dry and his bed dry but this saps my energy and not sure if I should be saying that to him.

So wish he was dry!

Reds

 

[Risa]

I feel your pain. We try and take Mum to the toilet every couple of hours but she doesn't want to spend more than a few seconds on the seat before declaring she doesn't want to go. Then in the night she will keep requesting loo visits but as soon as she is on the seat she is clamouring to get off. When she eventually goes she puts niagra falls to shame. Don't know if Mum no longer 'feels' the urge to go or actively fights against it. Either way thank heavens for the Tena lady pants and the Kylie sheets as otherwise it would be a nightmare. You just do the best you can in these circumstances.

 

[Beate]

Being incontinent means he is unable to hold back until he is on the toilet. Therefore asking him to wait until he goes to the toilet or keep his bed dry is quite pointless. He's not doing it on purpse. I have sent my OH to the toilet on numerous occasions to do a BM, he sat there for ages, then pulled up his pants and two minutes later he'd done a big one in his pants. He didn't do it to annoy me but because his brain didn't tell his bowels what to do when anymore. Just take him to the toilet on a regular basis, change his pads regularly and hope for the best. In the end I could have gone to the circus with my ability to sniff out imminent poos!
You can get Kylie sheets for the bed and Kylie seat covers for chairs and sofas, and they are worth every penny.

 

[Reds]

Thank you Beate and Risa. It feels frustrating and seems to require a lot of patience. Makes me feel sad. Doesn't seem to get husband down. I like to 'fix' things so finding it very hard that I can't. I suppose its best to deal with the matter moment by moment but not easy.

Reds

 

[Onmyown]

My mum stinks. She dosnt want to bath and looks like Henry the hippo from behind. I tell her this. She puts her pads on under her pj's but no knickers? Huge battle to get her to bathe or wear knickers to support her pads. She washes everyday at sink in bathroom but that's not washing? She will have a bath once a week? But only when I tell her she smells well it works sometimes? Drives me mad when shes up early and has a bath gets dressed etc when she is seeing doctor???? Even wears her knickers? Found her pads in the hot room mmmmm lovely aroma. So all the clean dry clothes are now smelling of urine? It's a horrible part of this disease. No dignity left and could not careless. I can see the look sometimes on the taximans face as the stink of urine when she's in the car but I've just had to ignore the embarrassement. Incontinence is an awful thing and yes it drains me. You never know where you are going to find a used pad? The worst is when she puts them in the front door porch that poor postman!!!

 

[Tin]

Hear you all so loud and clear and completely understand. The endless trips to the toilet only to watch mum wiggle and break the toilet seats, she just cannot seat still and so now I have a second commode in the bathroom - A few months ago I stepped back and let the incontinence products do there job. Problem with my mum is that she fights me every time I try to change her pads, as I am pulling things down she is quickly pulling everything up and so getting a clean pad in there has to be quick! I just about manage to get some barrier cream on her then I can relax for 4 or so hours, till the next time she needs changing and I have to take a few deep breaths to gear up for the fight! I cannot just have a quick check to make sure all is dry and clean, so I have to wait for the smell too. I honestly think she would be happy to wear a soiled pad all day in turn wetting all her outer clothes and my furniture!

 

[Reds]

Yes I don't think my husband would change if I didn't say so but not sure if he was left to it what he would do. I hate the thought to of furniture etc getting spoiled but I do remind myself its because he is ill. I worry about his skin too but use a barrier cream, a bath everyday and regular changes. Its been over a year now since he has been incontinent, want to manage but it does feel hard that every day is like this but I wouldn't want him to deteriorate further.

Thanks,

Reds

 

[Linbrusco]

When at home my Mum was semi incontinent.
Basically not getting to/finding the toilet in time. Lots of damp underwear.
I totally thought she would understand inco pads much like sanitary pads but she didn't.
I would find them in her drawer with the adhesive taken off, stuck together, in random drawers, under her pillow or bed. A visit to our incontinence team was a waste of time.
Mum came obsessed by buying underwear and washing them, and hanging them and hiding them in all sorts if places.

Now that she is in care ( 18mnths) incontinence is even more if a problem. They cannot get her to wear pads or pull-ups. They have her on a 2 hrly toileting schedule.
Mum will often go on her own, and forgets to use toilet paper or flush. As a result she often smells of wee, and her room smells of wee on ocassion.
Her underwear have disappeared over time, and they have found pairs in her bathroom bin.
16 prs now gone, and they have managed to get her into disposable underwear.
I thought about buying inco washable underwear, but they are quite expensive.
Mum has an obsession about toilets and will not use public toilets, only the one in her room at her care home. If you ask her if she needs the toilet, she gets angry, saying every one will hear you and to be quiet. If she forgets to wipe or flush, much the same... " shes not a child" etc
For this reason, makes even trying to take her out anywhere very difficult.

 

[Bunpoots]

My dad is semi-incontinent at the moment. I'll be taking him to the inco clinic on the 15th. Don't expect they can do much. I put stick-on pads inside his pants and have left a packet in his bathroom so he can just change his pad and not his pants when he has an accident. He doesn't though. Doesn't understand the process. Also he sometimes takes the pads out of his pants before he wears them. This I know because I find dry pads on his bedroom floor - and he stinks.

Used pads and wet underwear are draped all over the radiators, left on floors, thrown into the wardrobe.

The sofas at his house and mine are covered in pet pads and old blankets, I've tried kylies but he just moves them and sits on the sofa...grrrr!!
Same with the bed. I have to hide the kylie under the sheet or he takes it off. Extra washing. It never stops.

I could do with replacing my sagging sofa but I'm not getting a new one only to have dad wee on it (the pads sometimes move and don't catch everything). So for now the cushions are supported by an old drawer side, which works fine, but trying to keep them oder free is an on going battle.

Incontinence is miserable for all concerned.

 

[Marnie63]

Thank you Beate and Risa. It feels frustrating and seems to require a lot of patience. Makes me feel sad. Doesn't seem to get husband down. I like to 'fix' things so finding it very hard that I can't. I suppose its best to deal with the matter moment by moment but not easy.

Reds

Reds - I am struggling with my mum's incontinence too. After a stroke in August she is doubly incontinent. It's very hard to manage. You would think that in these times someone would have invented a better way to manage such things. The current methods are so hard.

It's hard to be a 'fixer' with dementia. I'm a doer and a fixer, but you cannot out do or fix damned dementia. It is what it is. The only way to deal with it is accept the current issue and find ways to deal with it. That's how I have coped over the past two years and three months. Don't try to fight it, you will never win and it will drag you down further in trying. Keep posting and people will give you good advice about managing the various (and, yes, awful) stages of this disease.

Best wishes.

 

[Reds]

Thanks for replies, v supportive. Husband wear disposable incontinence pull up pants and also a plastic pair over the top but unfortunately sometimes still leak. I feel for all who have to cope with someone else's incontinence as very difficult, mentally and physically.

Reds

 

[Yellowduck]

I can only say you must all be saints....
It must be a lot harder when it is your partner.

However Mum (88), only has the occasional accident which on most occasions the carers find (She lives alone with carers 4 times a day, and we visit daily for food provision, cleaning, emptying bins etc). I have made it clear that I (only child) or my wife will not be able to cope if she becomes significantly more incontinent, and I do not know how much the carers will put up with.
At this point we will have to look to a Care Home I'm afraid.

I have bought a small portable carpet cleaner so when mum has an 'accident' on her way to or from the bathroom it makes it easier to clean the carpet or furniture. I keep the water tank filled with a weak Dettol solution, so it always ready, for us or the carers to use.

 

[Beate]

I always thought it'd be a lot harder if it was a parent! Luckily OH was very compliant with his care and never minded me cleaning me up. I'm also not squeamish but it was always so much work and washing, plus it seriously hindered outings we had or could have had. Normal holidays in normal hotels became impossible, but I coped alright at home with him, and the Day Centre did too. Some people have said to me that this would be their "line in the sand" - I think you only know what your line in the sand is once you get there. Turns out my line in the sand was him losing his mobility.

 

[Reds]

I would find it hard if it was someone other than my husband. I'm trying to be strong but it is tedious everyday and have to think there is worse! Affects my self-esteem and energy!

Reds

 

[DMac]

I have no advice, but I do have a lot of sympathy. Even though my MIL is in a care home, my OH and I do bring her to our home for short visits about once a week, and we too have issues with accidental spills. Having failed a trial with washable inco pants (see my thread on this subject), I'm hoping the inco service will prescribe pullups for her - but we'll have to wait and see. Like others describe, pads are useless as she just pulls them out and strews them everywhere.

One thing that has worked for us though, is having a commode in our living room. It's on a wipe-clean surface, so reduces the problem of spills. We prompt her to use it several times during her visits, and she is happy to let me help her. In the care home, they allow her to use the toilet independently, as they feel it is more dignified for her to respect her privacy. I think I agree with them, as there is only so much they can do. They do shower her regularly though, and keep an eye on any potential sore spots. It's a devil of a problem, with no easy answers. We just do the best we can and muddle on through.

 

[Prudence9]

I honestly don't think it's a case of trying to be strong @Reds, I really do think it's where you have to draw the line for your sanity's sake.
Mum has been gradually becoming incontinent over the last 5 or so years because of a back problem that has now put paid to her mobility (plus the dementia worsening), the nerves no longer sending the messages through to her that she needed the toilet until the pain was so bad that suddenly she had "to go", and very often she was too late because she could hardly walk but was determined to get there.
That urge has now totally gone and she is now bed-bound and, to be honest, I have found it easier - for me, Mum no longer knows what's happening in that respect.

I have no problems with incontinence, I found that out many years ago with my Nan, but I would have been worn out by now if I was trying to chase someone around the house, trying to keep it and them clean. It was so difficult a few years back when I could get her out in the wheelchair and have to lug a big bag of incontinence pads, wipes, tissues, bin bags, hand cleanser, fresh pants, tights, trousers....on and on....I don't drive so there was always the added stress of taxis too.

My lines in the sand are other things which would probably seem so petty to others, but are huge to me.
Don't apologise, you have a limit, there's nothing wrong with that.

See if you can get commodes upstairs and down, try LA Occupational Therapists, they may provide you with at least one and contact the GP to refer you to your Continence Team (apologies if you've already done that).

And have a hug, sounds like you could do with one

 

[Duggies-girl]

I have read these posts and I am so full of admiration for those who cope with this. I don't think I will be able to. My dad is very clean at the moment but I know this will not always be so and I am dreading it.

I am coping with his dementia now but it is not too bad yet but I don't think I will be able to take my dad to the toilet or help him to shower, it just does not seem right to me and I know he would hate it.

I think that may be my line in the sand and that makes me feel so guilty. I hate this awful disease.

 

[Prudence9]

Please, @Duggies-girl, don't feel guilty, you are clearly doing your best. I know I couldn't have done it for my Dad.

Maybe Amy has that lovely Christmassy GM stick, give the beast a poke!
I'll pass mine over to anyone else who needs it, it's getting a lot of use today!

 

[DollyBird16]

@Duggies-girl
Lovely please don’t let the guilt get you.
We’re not trained carers. I worry so if I’m with Mum while she showers always thinking what if.
The toilet I know I would really struggle but who would do it if I’m not there, Dad just rings me.
I don’t love my Mum any less or want the best for her.
Mum is currently in hospital and it makes you realise just how responsible you are and how much you can give. I fight her corner, the things I really do the best of the best is hugs and kisses.
Take care of you. XX

 

[Bunpoots]

I know the feeling @Duggies-girl . I don't have to deal with dad's incontinence first hand, just the tidying up after. If things get worse I'm going to feel very uncomfortable about having to do any hands on caring. Not sure that I will...