It's not incontinence, exactly ...

Discussion in 'I care for a person with dementia' started by CollegeGirl, Apr 1, 2015.

  1. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,534
    North East England
    Mam has started to go to the toilet when she's not on the toilet, if you know what I mean. She recognises the need, stands up, pulls down her trousers and pants (in which she wears pads), sits down and 'goes'.

    She doesn't recognise that the thing she is sitting on is not the toilet. This can happen on kitchen chairs, lounge chairs, and in bed. Usually a number one, but occasionally number two as well.

    Dad takes her to the loo regularly and often - but she won't always go. Sometimes he can spot the signs and can intervene in time, but not always.

    When she's in day care, twice a week, she won't go to the toilet there and saves it all up for when she gets home, and the floodgates open. When they're out and about she refuses to go to public (disabled) toilets and again saves it till they're home.

    Dad has had visits from and contact with the incontinence nurse but nothing much has worked with this problem.

    I have no ideas. Does anyone else have any suggestions or tips as to how to deal with this, please, to minimise the distress and extra work this is causing dad? Fortunately I don't think it's distressing mam as she just isn't aware.

    I've urged dad to get Kylie bed sheets, and other protective pads, but he's sceptical about the bed pads for some reason, although he did buy one chair pad.
     
  2. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,955
    No ideas, just wanted to pass on commiserations:eek:
     
  3. Beate

    Beate Registered User

    May 21, 2014
    11,713
    Female
    London
    Kylie sheets are a godsend. They are comfortable to lie/sit on, soak up a lot of the moisture and draw it away from the body, are easy to wash and dry quickly. I wouldn't be without them. We also put one the length of the sofa at all times, with the ends tucked in either side.
     
  4. pimpernel

    pimpernel Registered User

    Sep 2, 2014
    9
    Derby
    from a web search:

    I found something which may be useful after a google search,
    'how to trigger toilet cues'. I can't post the link as I've not previously posted enough on Talking Point to be allowed to include an external link. However, if you do that same search, using the words I did above, you should get to an excerpt of a book called 'Vision in Alzheimers' Disease', and on page 312 is a section on toileting, which suggests ways of using colour, contrast, and light to highlight the toilet area.


    I don't know whether this info would be any help. It all sounds very hard on your Dad.
    I've no experience of this problem directly - my Mom has Alzheimer's, and its an early stage, she still has more awareness, including awareness that she is sometimes very confused.

    I'm just brainstorming here - here's an idea - what about some sort of toilet seat covers (dim memories of the furry ones my Aunt used to use - a bit icky but, I guess, washable) - maybe if your Mom regularly used 'her' covers (it would need to be several duplicates) - she'd be willing to use a toilet at the day centre or when out with your Dad, if the person with her slipped 'her' cover onto the seat? Maybe the same (contrasting, obvious coloured and or textured) seat could become a portable identifier for the appropriate place to go? Just trying to think outside of the box!
     
  5. opaline

    opaline Registered User

    Nov 13, 2014
    182
    Sorry, what are Kylie sheets?
     
  6. Beate

    Beate Registered User

    May 21, 2014
    11,713
    Female
    London
  7. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,534
    North East England
    Thank you, Also Confused!

    Opaline - Kylie sheets are a type of absorbant sheet that you place under the bottom sheet of the bed to stop the mattress getting wet. Oh, I see Beate has posted a link, thanks Beate. I'll have a look myself as I don't know a great deal about them either.

    Pimpernel, I'm so grateful for your searches on my behalf, and think your ideas are great ones! I'll definitely suggest all these things to dad, thank you so much, and I'm now off to google!
     
  8. Beate

    Beate Registered User

    May 21, 2014
    11,713
    Female
    London
    To be honest, I don't bother with a bottom sheet anymore, it just gets soaked too. He lies directly on the Kylie sheet which is really comfortable - the nurses at the Revitalise Centre did it the same. Under the Kylie sheet is the waterproof mattress protector.
     
  9. Anongirl

    Anongirl Registered User

    Aug 8, 2012
    2,675
    Hi CG, my mum started like this about 8 months ago. She seemed to know she wanted to go but when she got there seemed unable to co-ordinate herself. So she'd pull her pants down then stand there like she forgot why she was there and pull her trousers back up. They had to start using pads eventually. I still find it hard to accept that she's incontinent but I've been with her in her room where the toilet was right next to her yet she pulled her trousers down and crouched on the floor to do a one and a two. It shocked me and I desperately tried to get her to the toilet but she got annoyed with me because to her she couldn't see what she was doing was wrong.

    I'm not sure now if she even recognises the sensation to go to the toilet or if she's just forgotten what to do.

    Some care homes have red seats on the toilets but it seems to me that there comes a point when no measures can work.

    It's so very hard and I admit I always ask a carer for help if she has an accident. I feel for your dad dealing with this progression because it's so difficult, emotionally and physically. But we've discussed that and I just hope your dad realises when it's too much for him, though I have a feeling he's a little fighter! X
     
  10. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,534
    North East England
    Thanks AG and Beate.

    Oh yes, he's a fighter all right! I don't understand his objection to the Kylie sheets to be honest, but there seems to be a reason, in his head, why they won't be suitable.

    But he was up at 5am again this morning, stripping the bed and presumably trying to clean the mattress.

    My idea was to use two Kylie sheets, one on top of the other - then in the night if there is an incident, perhaps the uppermost sheet could just be whipped off and dumped in the bath, to be dealt with in the morning, but this idea doesn't seem to appeal :confused:

    Perhaps this wouldn't work, but I thought it was worth a try.
     
  11. daisydi

    daisydi Registered User

    Feb 25, 2015
    257
    Norfolk
    I found these invaluable, saved me having to strip the best everyday. Just changed the kylie sheet. It never really felt wet so I dont see the need for using two. I'm not entirely sure if I was using a kylie sheet to be honest. It was an absorbent sheet which tucked in either side which I used on top of the bottom sheet. It covered the middle of the bed. It was a eureka moment when I discovered them!
     
  12. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,534
    North East England
    #12 CollegeGirl, Apr 2, 2015
    Last edited: Apr 2, 2015
    Thanks daisydi - my idea being that the top wet one could be quickly whipped off, leaving another fresh kylie sheet for them to continue sleeping on for the rest of the night, in case of another incident later the same night.

    I've been looking at the link Beate kindly provided. It says that they can absorb up to 4 litres. Is that actually the case in practice? You see, these incidents aren't just leaking accidents - mam is deliberately emptying her bladder as though she's on the toilet, and there is a lot of urine. Will these be up to the job?

    I'm wondering whether to just go and buy some anyway but if he won't use them it's just a waste of money, and they are quite expensive.
     
  13. daisydi

    daisydi Registered User

    Feb 25, 2015
    257
    Norfolk
    Hi yes they are pretty absorbent. We had 2, one on the bed and one in the wash. Got them from Amazon.
     
  14. Beate

    Beate Registered User

    May 21, 2014
    11,713
    Female
    London
    I can vouch for the ones in the picture, they are pretty thick and absorbent. I have seen thinner and smaller Kylie sheets and I don't think they are up to the job unless it's only a light spill. They are expensive but don't forget that's the price for three. It's a good idea to have at least two so you can always have one in the wash. I confess I have four!
     
  15. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,534
    North East England
    Thank you both for your reassurances. I'm going to mention them again to dad.

    One more question - do they make you hot in bed, due to the waterproof backing?
     
  16. Katrine

    Katrine Registered User

    Jan 20, 2011
    2,850
    England
    #16 Katrine, Apr 2, 2015
    Last edited: Apr 2, 2015
    You do need several (at least two) because once washed they can take a while to dry. NEVER tumble dry a Kylie because rubberised textiles can catch fire. :eek: I recommend putting the Kylie through a rinse cycle before doing a full wash. Because they absorb so much urine it doesn't always wash out completely unless you do a rinse and spin first. I also recommend washing the Kylie by itself, or with contaminated bedding. If you wash it with 'clean' clothes they can take on a slight whiff of wee.

    Kylie is a brand name, there are other brands. It's like saying 'the Hoover' for any vacuum cleaner.
    I recommend sourcing this type of product through Incontinence Choice. They have a wide range, including chair covers and floor mats http://www.incontinencechoice.co.uk
     
  17. Essie

    Essie Registered User

    Feb 11, 2015
    566
    Without wanting to browbeat your poor Dad could you sit him down and say "explain, please" re his refusal of the Kylie sheets. I suspect, as you probably do, that it's just a huge reluctance to face that your Mum needs that sort of thing but the fact is, she does, and it will make his life a lot easier. If you can just get him to verbalise that at least you can address that, sympathise and then try and move him to a place where he can, albeit reluctantly, accept that they are a necessary change.

    I agree with you about putting two on and Beate's method of putting one on the sofa too. And I also wouldn't bother putting a sheet over the top of the Kylie on the bed - it's just more washing. I used to describe our house as the Wishy Washy Laundry as the machine was always on for something!

    Re the actual problem of 'where' your Mum is going I'm not sure there is a fool proof solution - do you have a commode in the room where Mum and Dad usually sit - could he just sort of 'guide her' onto the commode as and when she gets up and 'begins'? Also maybe just regular toilet visits, especially if she is 'saving it all up' for when she gets home - straight onto the toilet as soon as she gets in and regular visits during the day?

    Good luck, dementia certainly tests our inventiveness (amongst other things.....)
     
  18. Essie

    Essie Registered User

    Feb 11, 2015
    566
    That's really good, useful advice Katrine. I use a fairly new laundry product made by Dettol (is that good enough to be useful and vague enough not to be advertising??) and I find it very good at really 'deoderising' things - it might just be a fragrance thing but they do claim lots of germ killing properties and I like to think that's what it is. Either way it all smells good afterwards!
     
  19. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,534
    North East England
    #19 CollegeGirl, Apr 2, 2015
    Last edited: Apr 2, 2015
    Thank you Katrine for your practical advice - just what I need! I'll explore the link you've given me.

    I think dad's reluctance to put any of these practical commodities - Kylie sheets, commodes, etc - in place is that he feels that once he accepts they are needed, then mam will just continue down this path without ever regaining any sort of control.

    He is always desperately hoping that 'it's just a phase' - and indeed sometimes he's right!

    But this particular problem is happening quite regularly now, and is just causing him more and more work. I want him to at least consider these things to make his life a bit easier.

    However, that's easier said than done because he's not prepared to make his own life easier if he feels it's detrimental to my mam. Which is very laudable but also very frustrating at times. However, I'm also very much aware that it's easy for me to say 'do this' and 'do that' but I'm not the one living with it all. To be honest, if I was, I think I'd have run for the hills long before now!

    Thank you everyone for your help, it's much appreciated.
     
  20. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    If it is a product you have found helpful, and assuming you have no commercial interest in the product, it's fine to name it.

    See our help section on Personal Endorsements
     

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