Ultimate Indignity - help please

Discussion in 'I have a partner with dementia' started by Gerita, Sep 11, 2015.

  1. Gerita

    Gerita Registered User

    Aug 5, 2013
    9
    My partner was diagnosed with Alzheimer's 2.5 years ago and does not have any medication for this condition because none that's available agrees with his constitution. So his regression is to my mind fairly rapid.

    To put it as diplomatically as I can, he seems to have forgotten toilet etiquette. First, he forgot to flush after use. But worse, within the past 3 weeks or so, he seems to have forgotten that he needs to use toilet paper after voiding his bowels. I guess you can all imagine the result of this .... his own person is badly soiled, his clothes, the toilet bowl itself etc etc. It takes me about an hour to clean him and everything else not forgetting myself and the clothes I am wearing. I care for him 24/7 on my own - our kids live far away - and to say I am at a low ebb is an understatement particularly when in his frustration he starts swearing at me, something he would never ever have dreamed of because he is the kindest, nicest gentleman ever - this is not a biased description of my partner but it's what other people tell me.

    I don't know where to go from here. Physically he is in a pretty good condition but his memory is going downhill. He is 73 but looks younger and anybody who is not aware would never guess he is so ill.

    So my plea here is for any advice from anyone of you fellow Carers (though I so recent that label!!) who have gone through this process and can help me by sharing their solution to this problem. I am scared of going out with him now in case this debacle happens. Anyone please? Thanks
     
  2. lizzybean

    lizzybean Registered User

    Feb 3, 2014
    1,366
    Lancashire
    Not had to deal with this myself but can you follow him to the toilet & give instructions? Even if it is from behind a closed door it may remind him. If you are doing the cleaning up anyway could you be in the bathroom with him and use baby wipes or whatever?
     
  3. Beate

    Beate Registered User

    May 21, 2014
    11,746
    Female
    London
    Could you get him to wear pull-up incontinence pants? They cover all manners of sins and will keep the rest of his clothes clean. You'll still have to clean him up but it really shouldn't take an hour and soil your clothes too. My OH is double incontinent and I have to clean him up on a daily basis. Even if he manages to go to the toilet, I'll still have to wipe his bum. I got used to it. In fact, I do a dance of joy every time he manages to use the toilet effectively!
     
  4. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,992
    Suffolk
    :). Been there, Beate, done that! Fortunately not to much!
     
  5. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,953
    Gerita, I found dealing with poo problems the greatest barrier I ever faced in keeping a loving relationship with Mum. While I never was so unfair and unloving as to blame Mum for soiling herself, everywhere around her and me, I hated the mess and I hated trying to clean her up.

    Would it help to bring in paid care at least for the "getting up in the morning" bit when the poo problem is likely to be worst and may be most difficult for you psychologically? I was pressing for a "getting to bed at night" carer too when Mum resolved the situation by having a fall and eventually transferring into a nursing home.
     
  6. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,942
    Female
    Dundee
    I'm sorry things are so difficult for you. My husband is doubly incontnent and I know how hard it is to come to terms with this.

    Has your husband had a referral to a continence clinic or nurse? If not it might be a good idea to talk to his GP about this. I know every area is different but they should help you with some supplies of basic continence products. I doubt if they will provide pull up pants but it can be discussed. I suppose this would all depend on how willing your husband would be to go to a continence clinic or discuss it with a GP.

    I now take my husband to the toilet and stay in with him. I've bought plastic urinal bottles so that reduces the mess of water all over the floor when he misses. I even have travel ones which I take out with us. We use disabled toilets all the time.

    Bowel movements are a bit easier to cope with because of the product he wears. Most is caught up in that and I've become an expert at getting him cleaned and onto the loo before a disaster occurs!

    I do think it might be easier for me as my husband's dementia is quite far advanced and he's happy to let me (or a carer) support him in the loo.

    It does sound like it would be good for you to explore getting a carer to help with morning/evening personal care.
     
  7. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    3,072
    Devon
    Sympathies Gerita, I have very similar problems and cleaning up or even just waiting around can take at least an hour. Unfortunately or fortunately my OH sleeps most of the day and only really starts coming to life at around 4pm, then we are late to bed and that's usually when he has a bowel movement.
    I dread it as by that time I'm tired.
    I have requested an appointment with the Incontinence Nurse but they have been so unhelpful on the phone, saying all the nurse will do is recommend pads. I was told it would be a two month wait but I have been waiting 3 months. The private carer I interviewed this week was helpful in recommending which pads were easiest and most effective but my husband is very reluctant. He always denies he has continence problems although the bed is always soaked and he is usually wet at least once in the day. I will have to be firm though because his skin could otherwise be damaged.
    I hope you find some strategies to make life easier.
    We are getting a wet room installed soon and I hope that will make cleaning up much quicker.
    xxxxxxxxxxxxxxxxxxxxxxxxxxx
     
  8. Jinx

    Jinx Registered User

    Mar 13, 2014
    2,333
    Pontypool
    Having same problem too. It's not that he's incontinent although we have had three episodes recently where he hasn't got to the toilet in time, twice at day care and I've been called to pick him up and bring him home. Usually he knows when he needs to go and gets there in time but as you say, Gerita, just doesn't' seem to use paper and will just grab a flannel or towel to clean himself, and gets into a mess. It isn't nice and it's hard not to undermine their dignity. Can't really offer a solution other than hovering while he goes and reminding him about paper.


    Sent from my iPad using Talking Point
     
  9. Feline

    Feline Registered User

    Oct 25, 2012
    164
    East Devon
    Hi Gerita,
    My husband is doubly incontinent at 66 and in advanced stage of Alzheimer's. I also look after him without carer's. As Izzy said it is easier in some ways because they can't manage themselves at all. The in between stage is much harder, because they often don't know where the toilet is and you need eyes in the back of your head to check where they are toileting themselves. In my experience, I did regular toileting to catch what I Could in the toilet and like Beate was relieved when the toilet was actually used ! My advice would be to do regular toileting with him and have everything to hand, plastic gloves, disposable aprons (if needed ) , toilet roll, wet wipes, bottom flannel, towel, toilet cleaner etc. Have community nurses do an incontinence assessment, then you might get pull up incontinence pants which for us were a Godsend, because you can go out and about without too much worry. Have a rucksack with all you need for toileting and get a Radar key if you haven't already got one.
    We can't get out so easily now, but that is what we did when he was more mobile.
    Hope there's something in my speel that helps, keep your chin up and think of any positives. Take care
     
  10. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,942
    Female
    Dundee
  11. Jinx

    Jinx Registered User

    Mar 13, 2014
    2,333
    Pontypool
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,885
    Kent
    I think we need to explore whether it`s the `Ultimate Indignity ` for the person with dementia or from the perspective of the carer.

    There came a time when my husband asked for help because somehow he knew he couldn`t manage or organise himself. I did not consider he had lost dignity, I was just relieved, in spite of everything that had happened during the progression of his dementia, he trusted me enough to ask for help.
     
  13. truth24

    truth24 Registered User

    Oct 13, 2013
    5,725
    North Somerset
    We must have been fortunate in that our Continence Clinic provided us with pull up pants. Easier for me than the nappy type as you can just remove them by ripping a sideseam and no fiddly tapes to fix when putting them on. I think the guidelines were that they needed to be changed at least twice a day. You can also buy Tena ones in different strengths although they are fairly expensive but a comfort to have around. Like Izzy, I always took supplies with us when we went out. He didn't like them at first but soon got used to them. For him it was the ultimate humiliation and he hated me doing his personal care so much that every morning became a battle to get him in the bathroom and shower. Heartbreakingly it destroyed our relationship for a while and he hated me. He is now in a CH where they still sometimes have battles but fortunately is content and back to his affectionate self. My thoughts are with you.
     
  14. Eleonora

    Eleonora Registered User

    Dec 21, 2012
    170
    Abingdon Oxfordshire
    The answer is definitely, 'Pants' Gerita.

    I agree with you, Beate - Pull-ups are a must in our household.
    For us, toilet etiquette has become a distant memory. I have been helping my dear man to cope with the indignity of double incontinence for about a year now, and find that the pads offered by the continence advisers are quite hopeless.

    Thank goodness that most pharmacies offer a selection of pull-up pants in various sizes. They are, 'ripable' along both sides, which makes for a cleaner get-away if you see what I mean.

    i try to add a little dignity by putting his, 'real pants' over the pull-ups.
     
  15. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,942
    Female
    Dundee
    I found the problem with pull ups is that once they're ripped off we need to take off trousers and shoes to put a fresh pair on. Can be a bit of a hassle when we're in a disabled toilet.

    I stuck out for (and purchased) pull ups. I now find these much easier.

    http://www.incontinencechoice.co.uk/tena-flex.html?gclid=CKG44fHk8ccCFQHkwgodeWABRg

    I suppose it depends on the stage of dementia and the person's awareness. My husband happily lets me put these on him.
     
  16. Gerita

    Gerita Registered User

    Aug 5, 2013
    9
    Ultimate Indignity

    Hello Everyone - Thanks so much. Reading everyone's contribution to my plea for help has been really helpful. For one thing, I now know that my husband is not the only one to arrive at this stage of needing to be directed towards our lavatory and for me to monitor him. I take on board all suggestions about pull-up pants and consultations with incontinence nurses etc but while he has forgotten to use toilet paper after moving his bowels, he does use it after he's urinated - at least so far.

    I think that this problem arose from his bout of constipation for which he was prescribed appropriate powders. Unfortunately I misread the instructions and gave him the powders 3 times a day as opposed to once. Well you can all imagine the disastrous result which I believe has made my husband somewhat anxious about using the loo though he can no longer fully express himself.

    Someone mentioned a Feline key - what is that for please? Also, someone else asked me what stage my husband is at. Truth is I don't know how to guage these things because our local Memory Centre discharged him from their books and passed him on to our own GP. So how can you tell?

    Thank you all again for your help.
     
  17. Beate

    Beate Registered User

    May 21, 2014
    11,746
    Female
    London
    No, a RADAR key was mentioned, with link on how to obtain it. It opens disabled toilets everywhere.
     
  18. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,942
    Female
    Dundee
  19. Feline

    Feline Registered User

    Oct 25, 2012
    164
    East Devon
    You can also get a radar key from any tourist information centre, I should have explained it opens disabled toilets, sorry.
     
  20. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,942
    Female
    Dundee
    Our council gives one free of charge of the person has Attemdamce allowance.
     

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