Living with incontinence

[Rageddy Anne]

So far, so good, in some ways, apart from the tiredness, but the thing I dread most is INCONTINENCE, ESPECIALLY FAECAL INCONTINENCE. I dread it so much that I think it might be the thing that will tip the scales between coping, just, at home, and looking for a Care Home.

Due to arthritis I can't kneel, and can't wring out cloths very well for the same reason.

When I read about Dementia patients not understanding the problem, so that their Carers Are coping with pee and excrement in all sorts of places I think it must be the most ghastly thing about the illness.

Any comments and or advice on the subject would be very welcome. ( Please feel free to make jokes as well...Humour does help!)

 

[Beate]

It's the worst thing for me too. I even once started a thread like this!
http://forum.alzheimers.org.uk/showthread.php?70862-Living-with-incontinence

 

[LYN T]

Morning Anne. I won't lie to you-it's very difficult to deal with. When Pete became incontinent it happened all at once! There was never a time when he had the 'odd accident'. It was full on. It was difficult as he also used to remove his protection and smear the contents! Everyone has a point when they say that's it! I can't do this anymore. I always thought incontinence would be when I stopped being a full-time Carer-but once I replaced all the carpets with laminate it was a bit easier-but only a bit!

Luckily! I'm relatively young with no health problems so the physical work of clearing up didn't bother me too much. However, the general nature of Dementia is to effect older people-and the Carers are a bit older also with the associated health problems of age. You are right to be worried as it is difficult to deal with someone who is reluctant to be changed/washed.

Of course, some Dementia sufferers don't have incontinence; but other problems are just as distressing; it was the agitation/ violence which got to me

No advice for you really-sorry.

Love,

Lyn T XX

 

[Grannie G]

Hello Anne

Your post takes me back to a discussion myself and several other carers were having at a relative support group . Incontinence, especially faecal incontinence was everyone`s dread.

One of the group whose husband was just entering this stage, surprised herself with the way she was managing it and said `you just grow into it`. This stayed with me.

One day when my husband was still at home with me, his sitter was much younger than the usual sitters he had. I arrived home when the time was up and she said he might need some attention. He was in a dreadful state.

It was my first time and frankly I felt so sorry for his distress, I had no problem sorting him out although my inexperience caused me to take ages.

I had dealt with my worst nightmare.

What else could I have done? There was no one else. Needless to say I surprised myself.

I can`t kneel either. I lined a waste bin with a liner and used disposable wipes.

Try not to think too far into the future, it might be a long way away.

 

[Izzy]

I agree with the 'growing into it' suggestion. I always thought it would be the line in the sand. Turns out it isn't admittedly I am 21 years younger than my husband and physically fit. I'm not saying it's easy but I manage it. There's a document about continence which you might find an interesting read. I think it's in the resource section. I'll look for it and be back!

 

[Izzy]

Here it is -

http://forum.alzheimers.org.uk/showthread.php?80125-Alzheimer-Europe-Report-continence.

 

[Beate]

Yes I can deal with it now too and it's not a reason for a care home for me but I would be lying if I said I don't hate it with a passion as it basically put paid to foreign holidays for us and is generally, pardon the pun, a pain in the ****.

 

[Ann Mac]

This is one area where I think I may be a bit luckier than a lot. With 20 plus years as a 'professional' carer, I've long since got over the 'ick' factor of dealing with incontinence - and vomit, too. It simply doesn't bother me, and I'm confident I can handle it without making poor Mil feel even worse - even on the odd occasion when she actually recognises/admits that she has had an accident.

The issue for me - as I have had brought home to me this morning - is the physical effort. I have a 'non-specific problem' with my spine (probably caused by the years of care work) which has now also caused me to develop repeated bursars in my hip. Unfortunately, despite only being 51 this means I have on-going pain, and heavy lifting and bending make it a lot worse I found out at 7.30 this morning that the reason for Mil being up and making a noise in her room from 4a.m. was that she had wet the bed, then (probably embarrassed and trying to help) had attempted to get back in, having pulled the sheet, kylie and matress cover to the foot of the bed. She then wet again, soaking the matress. With OH having to get ready for work, this meant me having to bend to scrub the matress, then lft it upright in front of the window to dry. Its also given me an additional 2 loads of washing, of heavy bedding to deal with.

If anything means we end up having to consider a care home, it might just be the heavy work involved in incontinence, rather than the incontinence itself.

 

[Lindy50]

Mum has been incontinent of faeces several times a week now for maybe six months. I found, to my surprise, that as there's no option but to deal with it, somehow I manage. I don't like it, and many's the time I've paused outside her door and thought, "oh, not today, please".....But in itself it's not the line in the sand I thought it might be.

I can't kneel either ( the physio has put me on non-weight bearing exercises for my arthritic knees) but I guide mum to the loo, sit her down and then gradually clean up her clothes, the floor, and mum herself. As other posters have said, the imperative is to minimise distress to her, and that gets me through it.

The thing that may result in mum moving to residential care, is that there isn't always someone there to deal with the incontinence, as she lives semi-alone. Then she gets in a horrible pickle, which is much worse to clean up.....and which is very undignified for her. Not helped by her inability to remember / refusal to wear pads.

Good luck Anne, if your hubby ever does need residential care, I bet any incontinence will only be part of the problem.

(((Hugs)))

Lindy xx

 

[Grannie G]

The deciding point for residential care for me was his losing mobility and still insisting on wandering to find his real family.

I thought either Dhiren would have a dreadful road accident or cause a dreadful road accident.

 

[Rageddy Anne]

Thanks everyone. I'll cling to the hope it never happens! And the reassurance that it's possible to grow into it!