1. germain

    germain Registered User

    Jul 7, 2007
    Hello again

    Advice sought yet again !

    Mum has been urine incontinent since she was in the local community hospital around 3 years ago - (we were told they were only allowed to the toilet every 3 hours as the nurses were too busy to take them !!) Don't think the start of incontinence was a coincidence - perhaps the AD brain just accepted that this was OK ?

    We've been managing this via pads, kylie sheets etc and apart from the huge amount of overnight washing - as no pad in the world can cope with a ten minute sit on the side of the bed in the morning when its soaking already - we've managed to cope.

    Anyway - to stop the rambling - Mum recently started to try to delay little outings to the shops etc by needing to spend around 30 minutes in the loo before we went. Fine - we could cope with this - but last Sunday my sister went to take her out and she totally refused and then announced she needed to go to the loo (as usual) but spent so long prevaricating despite major urging that she filled her pants !!
    This has never ever happened before and of course it was awful for my sister.

    We're not sure how to cope with this - Mum does get in a real temper sometimes with us and my sister said it seemed almost deliberate - with an attitude of - you can't make me do anything and if you try "I'll teach you".

    Does anyone think this deliberate action is possible in middle stage AD or is it just another extreme stress reaction ? Mum didn't seem to care about the mess and simply got very defensive - I didn't do that etc

    Its very very difficult to know how to cope now - we are very very fortunate in that Mum is in assisted living and is an angel for the carers but an absolute devil with her family - and the bigger worry is that if she starts to become doubly incontinent then the place she is living may have to ask us to move her into a full blown home.

    Whew - what a rant - but its amazing how, for me, getting it all down in black and white does seem to help a little.

    regards to all
    thanks in advance
  2. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    North West England
    Just to offer you support.

    I sometimes feel my husband ‘deliberately’ holds it all in … and delays going to the loo on purpose.
    His incontinence in sort of new–ish, though we have had it on/off previously .
    I’ve asked myself if he is REALLY aware that he is doing this, and I HOPE not.

    He also delays MANY occasion by … just popping to the loo, then takes HOURS.
    He too is an angel for carers, not ME though.

    I get blamed for him being wet MOST of the time as I have delayed him going to the bathroom. BUT he will not ‘go’ if asked/prompted. HIS TIME ONLY .

    He’s tipped a urine bottle on the floor in temper, “That will give you something to do …!! .. TOTALLY out of the blue.. NO upsets before hand… just deliberate.

    He also says… its NOT wee… it’s sweat….. or asks me to put the clean pad and underwear on… ON TOP of the already wet one !!

    Take Care

  3. Margarita

    Margarita Registered User

    Feb 17, 2006
    #3 Margarita, Jul 31, 2007
    Last edited: Jul 31, 2007
    I've also have issue with my mother with her incontinent

    My mother tell me that she does not want to wear them , when she go out because people will know that she wearing them . she take them of without me knowing.

    I've taken her out , told her she can do it in her pads , but she don't like it .

    she Ok wearing them at home , but not when she go out .

    No I don't think its deliberate , even thought I have thought that in the past, in the begging

    I perceive it , its all down to them coming to team with it , , not like wearing them going out , not seeing the logic in it, embarrassment , shame stressing over it to the point of irrational thinking and not amount of reassurance is going to reassure
    that its OK to urinate in the pads when she out , or you never no may be time she will , if anything like my mother I would say no .

    I think your mother going to the loo taking a long time , because she scared saying see something wrong, but she can't comprehend it in her mind , all going to be OK that it all down to the disease .
  4. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Germain amd Daisy

    I'm with Nada on this one. I don't think it's deliberate.

    I'm at a similar stage with John, athough it's easier for me than for you Germain because I'm with him all the time.

    He too produces copious amounts of urine during the night, this is because the part of the brain that controls the kidneys is not working properly. Normally the kidneys shut down during the night to allow us to sleep. In an AD sufferer this may not happen, so normal amounts are produced.

    I agree, pads just don't cope (and I've tried everything!). I now get him up when I go to bed, and he often gets me up another two or three times during the night -- and is often still wet in the morning.

    During the day he doesn't wear pads, and sometimes has accidents. If I try to take him to the toilet, it often doesn't work, because he doesn't know what to do. He only knows if he himself feels the urge. Strange, because when I get him up in the night, he performs without problem! Reflex, I think.

    I think being told to do something produces confusion and anxiety. Of course, not telling them may produce accidents (and yes, I've had 'filled' pants too), but I honestly don't think it's deliberate.

    On a lighter note, yesterday John started to wee as I was showering him. He glared at me and asked 'Did you do that?' I just wish I had that much control!
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    #5 Margarita, Jul 31, 2007
    Last edited: Jul 31, 2007
    They is a way around it , but your sister would need to have a lot of time .

    What I say to my mother is .

    wear the pad , in case you leak , because we all leak sometime , Or:- in case they not a toilet around .

    Hopefully they a disabled toilet around , because my mother wants to go to toilet even with the pads on .

    but I pray to myself that they is a toilet , because she hold it all in till she found one , but then she not holding she leaking , that when she does find the toilet it go all over the place because she bust it all out before she sit down .

    One day I took her out , no disabled toilets around , toilet so small, wee went all over the place , I could not get her up from toilet :rolleyes: , so don't forget the wet wipes
  6. blue sea

    blue sea Registered User

    Aug 24, 2005
    This is such a stressful problem, isn't it?
    I'm positive in my own mind that there is nothing deliberate. Unfortunately incontinence is yet another aspect of the deterioration in many people with dementia. It's helpful to bear in mind that, at the start at least, it's not a physical but a mental cause. The person starts to fail to recognize the early warning signals, sometimes fogets where the loo is, or what its purpose is. Sometimes the carer can learn to recognize early warning signs from the person's behaviour and can gently lead them to the loo. Increasingly, however, over a period of time, the person doesn't understand what to do when they get to the loo and may get anxious or even aggressive at being prompted to go. By this stage they are probably forgetting how to do things like brush their teeth, dress and undress etc. and will often resist being washed or bathed. It is when the person starts to become doubly incontinent that carers at home often, understandably, feel they can no longer cope. Not only does the person fail to get to the toilet in time, but they may refuse to wear pads, or even use somewhere like a wardrobe as a toilet. I'm sorry to paint such a bleak picture, but while you can reduce the problems of incontinence by following all the helpful advice, you cannot 'cure' it. It can become increasingly difficult to take the person out because of potential 'accidents' and so the carer can start to feel trapped in their own home. Therefore I would advise anyone who is caring for a loved one at home, and who is starting to get stressed by dealing with incontinence, to look at possiblities of respite care. This gives the carer a break and, should the situation worsen, may help the transition into long term care. It can be hard to stay patient with the person, but it really isn't their fault and they will often, in the early stages of becoming incontinent, sense that they are doing something 'wrong' and 'shameful', causing them even more distress. Dementia is an illness that gradually strips away the social norms of behaviour that we take for granted.
    Blue sea
  7. TED

    TED Registered User

    Sep 14, 2004
    Im glad someone else has had the nerve to say they think it's deliberate
    cos i am convinced it is.

    Mum plays up no end for Dad and it's driving him mad too
    but once someone else is there (me, my sis, carers) she is fine.

    How do i know, well i dont announce my arrival anymore
    and have seen for myself what she does.
    Yes i am very aware that most of this is down to the condition but am absolutely adamant that there is a large amount of "im going to get my own back" and take it out on the one person who is there all the time and does 99% of all the work

    Going to the loo is the biggest hurdle now, cos she wont let you help her, and often it's a struggle / or too late.

    Dinner times can be awful too, i've seen her chuck it all over the place and Dad cant have his dinner in peace either. no really it's all getting too much for us all now and i just had to have my little rant having seen that someone else has had a similar situation -- you are not alone.

    after all this, we carry on regardless, it's a challange and we'll eventually lose, but we keep going (just). My fear now is that Dad will give in first.

    I'll go now
  8. MillyP

    MillyP Registered User

    Jan 5, 2007
    #8 MillyP, Jul 31, 2007
    Last edited: Jul 31, 2007
    The CPN told me that Dementia sufferers do indeed play their closest relatives up more then they would anyone else....I did say to him that Dad seemed to act up more with us then he did when he was at restbite and he said this is usually the case....sad but true
  9. Margarita

    Margarita Registered User

    Feb 17, 2006
    If they getting back at anyone , they just getting back at themselves , angry at themselves

    my mother does not play up when my son is around , because of his firm voice, when I change the tone of my voice assert myself , it seem to scary my mother into behaving .

    I don't like doing that to much as I feel its like bulling her to behavior in a way that is socially expectable around people or around me
  10. Daisy123

    Daisy123 Registered User

    Jul 15, 2007
    village nr Swansea
    Although my mother is not incontinent all the time, which is strange, she refuses to wear a pad at all. Looks at the wet floor and says she doesn't know where ithat came from, or even asks where it comes from. When I did manage to get her to wear a pad, she went and told my husband all about it and complained to him about this thing between her legs and how bulky it was. Not pleasant for hubby
  11. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    North West England
    I found that if I suggest to my husband to use the loo … as “I am about to wash the bathroom floor, and it will be wet for a while afterwards”…..
    He will ‘try’ and go…..
    BUT , if you ask him to try JUST before we go out… He will ‘dig his heels in’.

    He has also been surprised at ‘accidents on the bathroom floor’ …. tends to ‘poke’ at it with his walking stick, and spread it around.
    Then calls me to say he has ‘found something’ on the floor !!
    But it WAS NOT HIM .

    I still feel ‘at times’ it IS deliberate, especially when he tips wee on floor, and announces that ‘it will give ME something to do’.
    He’s done the same with a mug of coffee as well. MUCH harder to clean coffee from rug, than ‘wee’ off tiled bathroom floor.

    Take Care

  12. Margarita

    Margarita Registered User

    Feb 17, 2006
    #12 Margarita, Jul 31, 2007
    Last edited: Jul 31, 2007
    I must say that this thread is really giving me food for thought today .

    My mother 5 years ago was into this stage, but worse when I resized something was wrong with my mother as she use to be double incontinent , use the bath as the toilet , front room , bedroom .

    For 4 year taking medication for late stages of AZ she went back to using toilet the normal way , just forgetting to pull chain .

    but for the last year

    She started like Daisy123 said
    I find it to much of a concordances , that so many carer feel like they are doing it deliberate, meaning showing the same symptoms , but in difference way in they reaction when they do urinate , but seem to them ( carer ) like it did to me that mum doing it deliberate.

    So to me now I don't believe its deliberate , but each to they own view .

    Mum ask me to day to pull chain , first time she very ask me that , because before she would never admit that she had forgotten.

    So now I understand more its going to be a Sad day for me , when she does not go to the toilet on her own even with pads on, God AZ is hard to understand

    I have been taking respite , because of how stressful it has became with mum incontinent and I still get stress about it because I think she doing it deliberate, its really help me germain you stating this thread . hope its also help you
  13. Lonestray

    Lonestray Registered User

    Aug 3, 2006

    My wife has been doubly incontinent over the past 8 years. Like every thing else with Alzheimer's I've found there's a consistency in it's inconsistency. Once I came to understand that, it became easier to accept.
    Each loss of function with Jean was like: now you see it, now you don't, three examlpes:
    1. Spacial awareness, Afraid to come down stairs, even with my help. I needed to get on cooking dinner and told her to stay, that I'd be up later. Shortly she was stood behind me in the kitchen!
    2. Loss of speach, first noticed when she remarked: The words won't come out properly. Her speach would see saw between fine and confused.
    3. Incontinency. Every thing was normal until one day when I noticed she'd messed on the carpet. When I pointed it out, she blamed the dog, we didn't have one! It must have been the one she had back home in Durham as a teenager. Now I had to start taking her to the toilet and fix her with pads. Once I put her on the toilet, she assured me she was finished. I wiped her bottom and placed her on the bidet (with fountain spray). When I was ready to dry her I found the bidet was full of more than water. Of course she never did that!
    Now I've become some what of an expert at keeping her clean and changing her pads. I have a foam mattress which I cover with thick cover which fits snug. On top I place three pads across the bed and one on the pillow in case of accidents, also cuts down on washing.
    Pads come with different degrees of absorbancey, we use Comfort Super Tena. There are blue droplets like tear drops to indicate the levels they can absorb, the max is 8 droplets, our one is strength of 7, the eight one droplet is clear. FG703211430.
    Morning and evening I hoist her onto the commode and wheel her into the, what you call the wet room.
    All carpets I removed from the downstairs and replaced lounge and dining room with hard wood high shine tiles. The dining room is her bedroom. The hall floor I installed large glazed tiles. For more space I added a conservatory etc.

    The wet room for anyone thinking about one. It's in the entrance hall, the down stairs toilet: 56" back wall X 5' 6". The walls tiled and floor fitted with non slip tiles, toilet moved to side to allow commode to fit next to it. Shower on back wall,
    drain some 20" from wall, sights under commode. There's also a small hand basin to the left of the entrance and the door is changed to open outward.
    I wheel the commode up to the basin and place Jean's legs either side, put the brakes on the back wheels and proceed to brush her teeth.

    Forgive me for going on, but how I wish some of these SW and SS or who ever else are involved would come, look and learn on how things could be done in a labour saving way. I'll be more than pleased to take any questions, that's me back in the classroom. Padraig
  14. lovdn2

    lovdn2 Registered User

    Jul 24, 2007

    A little lad I know has the same problem and is on medication to prevent bed-wetting, it works really well, would there be a drug to help adults with AZ too?
  15. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Yes, John has been on Detrusitol, which is normally given to children, for about six months. It worked for a while, but has stopped working, so he's off it.

    We also tried Desmopressin, which is a nasal spray which is supposed to stimulate the relevant part of the brain, but that didn't work at all, and gave him violent diarrhoea. But anything's worth trying.
  16. germain

    germain Registered User

    Jul 7, 2007

    Hi everyone

    Just come back from the end of month fee sorting visit and asked if all was OK with Mum.

    She's settled in well, although very very slow and has a sense of humour !!
    Well thats something we haven't seen at home with the family. Also no problems out of the ordinary with incontinence so it does look as if she plays up a bit for us.
    Or is it us stressing her out with demands on her to go out etc ? We also have the "one shoe" syndrome, where she can put one shoe on OK but totally refuses to put the other on for us. (thats when the 30 minute toilet visit usually happens)

    She actually walloped my sister with her walking stick last week ( habit of a lifetime) but has done nothing at all like that with the carers. It appears that she actually made some of her own breakfast last week too (has always had the attitude with us that its our job if we're there)

    Much love to all and hugs to dear Margarita - she actually put my name in print ! I was chuffed ! BUT does anyone else feel disloyal/guilty about some of the things they post on this forum. Its the washing dirty linen in public guilt I think (and very apt considering the thread !) We've spent so many years saying "she's fine thanks" that actually admitting she isn't is quite stomach churning at first.

    On a lighter note - does anyone have any creative ideas about what to do with a garage full of Tena pads - apparently the incontinence service has Mum down under two mis-spelled surnames and three different addresses so we get the deliveries about 5 times ! My husbands threatening to insulate the whole house with them if they're not picked up soon. (that should lower the council tax for the street !)
    Will try to get them picked up but don't hold out much hope given the current admin chaos.
  17. Margarita

    Margarita Registered User

    Feb 17, 2006
    #17 Margarita, Aug 1, 2007
    Last edited: Aug 1, 2007


  18. May

    May Registered User

    Oct 15, 2005

    How about making bunting out of them Germain? :D
  19. connie

    connie Registered User

    Mar 7, 2004

    Put them on e-bay.....only joking, but in this area it is like tirying to get 'blood out of a stone.

    Idiotic situation, isn't it:

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