1. Angelap

    Angelap New member

    Sep 21, 2018
    5
    Hi; this is my first post as I’m struggling to care for my elderly mother who has Alzheimer’s and womb cancer.
    Mostly things are fine, repetitive questions etc is wearing but bearable. I am being tipped over the edge with her toilet issues.
    On Sunday, after being left for a very short while she went into kitchen and had a poo in cereal bowls she took out of cupboard. This morning she has wet and soiled her pad then tore it into small pieces and scattered it like confetti all over her bedroom floor.
    She seems to go through different phases, this week it’s toilet, last week she had a very sleepy week, some weeks she rips and pulls apart her clothes - blaming an unknown child for the destruction, some weeks she is argumentative and difficult. Some times she is lovely and her old self. I never no which one is going To manifest.
    Does anyone else have similar issues? Any advice out there?
    (She has palliative care for the stage 2 cancer, other than bleeding there are no other issues, the dementia prevents her understanding the cancer diagnosis)
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,883
    Female
    Scotland
    I sympathise. My husband has been increasingly incontinent since being in hospital in February. Like your mother it is not consistent. I feel I have got on top of it and something else takes over. It is indeed wearing and hard to comprehend.
     
  3. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,705
    Female
    Dundee
    Good morning @Angelap and welcome to Dementia Talking Point.

    I'm sorry you're facing these issues. I'm sure you'll get lots of support here and am glad you found the forum.

    Continence was a constant problem for my husband. We had some support from the local continence service but to be honest I never really got on top of it.

    These constant challenges and changes are wearing. Do you have support from any dementia specialist? Perhaps Admiral Nurses might be helpful -


    https://www.dementiauk.org/get-support/find-an-admiral-nurse/
     
  4. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,158
    Nottinghamshire
    Hello @Angelap and welcome from me too.

    I'm sorry to read of the issues you're having with your mum at the moment. I know how difficult it is as I had similar problems with my dad. He too denied any responsibility for the mess he'd made and some days when I got there it could be everywhere.

    With this total lack of understanding the only thing I found useful (apart from the pull-ups which he would sometimes wear - but he fought against it because he didn't believe he was incontinent) was an electric carpet washer - the sort that sucks up spills and shampoos. Mine is a small Bissell with rotary cleaning brushes. It kept the smell at bay.

    Didn't stop dad making a mess everywhere though..
     
  5. Angelap

    Angelap New member

    Sep 21, 2018
    5
    Thanks all. I know there is no magic wand &. No one can get inside the head of the person to understand why they do things.
    My daughters my constant helper but she has a toddler to look after too, my husband happily keeps my Mum company but refuses the toilet issues.
    I buy plastic gloves & every cleaning product to keep my house clean & mask the unpleasant smells. I just keep plodding on
     
  6. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,705
    Female
    Dundee
    If you haven’t already done so do try to get a referral to the continence service. The GP should do this.
     
  7. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    506
    Female
    High Peak
    Oh crikey - that sounds awful. Must be so hard to deal with this.

    I have no answers I'm afraid but my heart goes out to you... Stay strong.
     
  8. Angelap

    Angelap New member

    Sep 21, 2018
    5
    The continence service only provided pads and that was a fight. “Dementia patients do funny things with pads so prefer not to prescribe them”
    pull ups are much easier so I choose to buy these myself.
    Primrose hospice helped by providing a commode & contacting the continence service on my behalf.
    Last year I took early retirement from a very stressful & high powered job, so why am I finding this difficult?
     
  9. canary

    canary Registered User

    Feb 25, 2014
    10,709
    Female
    South coast
    Because you cant plan anything.
    I too took early retirement from a stressful and responsible carer, but I managed that by planning and organisation. Now I cant plan at all - everytime I try it just goes out of the window and Im left frustrated and annoyed. I dont do "go with the flow" very well. I know its the only answer, but it males me feel anxious and helpless.
     
  10. marionq

    marionq Registered User

    Apr 24, 2013
    5,883
    Female
    Scotland
    That’s an interesting turn the thread has taken. I wonder how many of us took early retirement because our spouse or parent showed signs of not coping. I did this at a point when I was not thinking dementia but was thinking - old age? Deafness? Loss of confidence?

    Of course none of these were the real cause but it took time for dementia to be at a stage where it could be diagnosed. By that time I had become stuck in a caring role with no escape. That is the hard truth of it. The good salary, the status, the social contacts, the holidays - now it’s nonsense conversations or none at all, incontinence, disturbed sleep and a questioning of how the blazes it all came about.
     
  11. Philbo

    Philbo Registered User

    Feb 28, 2017
    705
    Male
    Kent
    I understand it can be a postcode lottery regarding just what the NHS incontinence service will provide. They initially said that they'd only provide pads for my wife but speaking to folk at our local dementia coffee morning, I found out that if there was a real need, they sometimes provided pull ups. As I had already started buying these (trial and error), I pushed and thankfully, they agreed to supply enough for 4 a day. Perhaps if they insist on pads, you could ask for written details of their policy on this, so you can take it up with the SW? (worth a try?)

    I have said on other threads that I have found that carer support organisations can often signpost the best routes to try for all sorts of issues, often acting as advocates on your behalf.

    Good luck.
    Phil
     
  12. Thursday

    Thursday New member

    Jun 20, 2019
    5
    Hi Angelap, I too struggle with the toileting aspect of things. The worst was when Mum tried rolling a cigarette with a lump of poo she thought was tobacco. You have to laugh! Guiltily, I prefer her sleepy days to her active days because of the trail of destruction which sometimes ensues. But, like your mother, she still has elements/days of her lovely self back.

     
  13. Maggiesmum

    Maggiesmum New member

    Jan 9, 2019
    4
    My sister is the main carer for our mum with me taking time off work to give her breaks when I can. She also has incontinence and my sister is sometimes at the end of her tether with it all. Mum also shreds up dirty pull ups and throws them around. Hides poo (everywhere) and treads it all around the house. She also refuses to have carers visit to help. Some nights my poor sister is up multiple times changing the bed.
     
  14. Angelap

    Angelap New member

    Sep 21, 2018
    5
    Wow, I’ve only just caught up on these comments. I’m amazed that others have the same poo issues. Thank you for sharing your stories, I know it’s part of the illness, but I do sometimes think I should be able to ‘cope’ better, and not be so horrified. Good luck to everyone struggling xx
     

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