Waiting to hear how bad it is this time...

Discussion in 'I care for a person with dementia' started by TooHard, Jun 19, 2016.

  1. TooHard

    TooHard Registered User

    Sep 16, 2015
    Mum says she has had diarrhoea again this weekend. The last time this happened I had to clean it up a couple of days after it happened (I live over 100 miles away and can't always drop everything instantly to deal with problems like this) and it was so unpleasant I cried while I scrubbed the floor, the toilet, the sink and the bath.

    I was at mum's last week - Tuesday until Thursday - and had to clean up the "usual" mess - dirty bathroom and kitchen (both vile but neither unmanageably dirty) and pick up the "usual" number of used tena lady pads which were distributed around the bathroom, bedroom and kitchen. I changed the wet bed. I can't - even if I wanted to (and I don't) - go back this week. I try to go through every 3/4 weeks which isn't nearly enough to deal with the level of mess and dirt. I find the house so repellent now I'd rather not have to ever go there again but I'm stuck with it because mum refuses any sort of support. I swore after the last time I wouldn't be cleaning like that again.

    But what do I do? Leave it?

    I'm so fed up with her GPs, the Social Work department and the Dementia Support team! It's okay for them....they don't actually have to deal with mum's unwillingness to accept help or her lack of understanding that she needs support. They just ask how she is and accept 'fine' and ask if she needs help and accept 'no' for an answer.

    I wonder how long it will take for me to feel sufficiently guilty to give in and go and scrape the **** (sorry) off every surface in the bathroom.
  2. Delphie

    Delphie Registered User

    Dec 14, 2011
    You poor thing!

    Well, you could just leave it. You could also leave it, then contact her social worker and explain that she's living in a poo covered house which puts her firmly in the 'at risk' category, and have them decide if her no, she doesn't need any help answers are rooted in reality.

    To be honest, unless you do something like that nothing will change. Her social services might well know that she's not really managing, but the fact is that while you do the running around the situation is being managed. By you. But if you stop managing it, they'll have to.

    My mum was, eventually, going to be sectioned due to her self neglect. I did what I could for her, while she refused all help I might add so everything had to be done covertly, but this was at a massive cost to my health and business and, really, I was just postponing the inevitable. She needed residential care because she needed supervision, someone to make sure she ate properly and was warm, safe and clean.

    The sectioning didn't happen in the end because I conned her into going into care (holiday in a lovely hotel etc).

    So yes, you can leave it, as hard as it is. You'll feel guilty whatever you do by the way.
  3. Beate

    Beate Registered User

    May 21, 2014
    Have you ever taken "before" pictures of the mess? If not, do so at the earliest opportunity and send them to everyone who has dealings with her. Ask them whether they think this is "fine" and whether it's acceptable to leave a person in such squalid conditions. Remind them they have a duty of care for a vulnerable adult at risk. If you've tried this before and got nowhere, now is the time to find an independent advocate to fight your, and her corner. These could come from her local carers centre or the Alzheimer's Society. You provide them with the facts, they act for you. They often have connections and know which buttons to press.
  4. TooHard

    TooHard Registered User

    Sep 16, 2015
    I recently started taking photographs so that I could prove that I was not exaggerating for reasons I'll not get into.

    I started this with the last bout of diarrhoea and during my last two visits - I've photographed faeces, saturated tena lady pads, empty fridge, mouldy food, wet bed etc.

    I've emailed my concerns - and told them I have photographic evidence - to the GP, SW and dementia support with no success whatsoever. Mum's dementia is compounded by her visual impairment - she can't see the dirt therefore it doesn't exist and makes it clear that it doesn't matter to her anyway. She gets so angry when I clean and her response when I tell her I clean for ME as I can't stay and use a dirty bathroom or kitchen she just says I needn't bother staying in that case. I haven't hoovered in 3 months - the living room floor is covered in crumbs, cheese, birdseed etc and her bedroom floor is so sticky that hoovering doesn't lift anything anyway (dog pee is the main problem there). The squalor doesn't bother her and, it seems, doesn't bother GPs, SW or Dementia Support - nor does it bother them that she hasn't had a bath or shower in over 2 years (not even in hospital), can't use the cooker or microwave and can't use the washing machine or tumble dryer. I'm stupid enough to think that denying the need for help in those circumstances indicates a lack of capacity to cope with day to day activities.
  5. Betty1925

    Betty1925 Registered User

    May 26, 2016
    You have my sympathy. My mum is having the same problems but says she won't wear the incontinence pants because she doesn't need them.she also won't accept any support. I too have been scraping and cleaning bathrooms for weeks. It's soul destroying.
    This has been going on for so long and her Gps are no help and the Crisis care team are very slow to respond. I have decided after visiting today and finding her bed soiled and the bathroom filthy again that I am going to ring social services and tell them that she is a danger to herself and that I can no longer cope with her. I am coming to the conclusion that the only way to get any help is to walk away . I do hope that you can get some support as you sound quite desperate.
  6. Clueless2

    Clueless2 Registered User

    May 14, 2015
    Firstly a huge hug, what you are doing is amazing. How to move on to a positive result?

    It's time to play hard ball. An email, crucially with all the dated photos attached, to your MP, head of SS and to your GP (or NHS Chief Exec) together with details of dates of phone calls and copies of emails previously sent. Often seeing the harsh reality is more effective.

    Of course highlight those key phrases of duty of care, vulnerable adult etc.

    It is a very sad reflection that if an animal were found living in similar conditions, the RSPCA and the press would be all over it like a rash. Possibly a point you might also make to SS.

    Good luck.
  7. jorgieporgie

    jorgieporgie Registered User

    Mar 2, 2016
    So sorry for you having to go through this. I would ring SS and say you refuse to go, you Aare heading for a break down with all the stress and Mum is at risk. It is there duty to place her some where safe and clean her up. You will feel guilty but at the end of the day you will be doing what is best for your Mum you live to far away to be her carer. Good luck and keep posting. Big Hugs xx
  8. Toddleo

    Toddleo Registered User

    Oct 7, 2015
    Toohard, this really is Toohard isn't it!!

    You must act on the suggestions of the TPers above. Be strong and keep us posted.
  9. TooHard

    TooHard Registered User

    Sep 16, 2015
    No response to my email to SW - mum has had 4 identical letters from them; each one saying the same thing: "sorry we haven't been in touch, we'll be in touch within 4 weeks". It would seem that a letter every four weeks constitutes 'being in touch' in mum's area. If I get nothing tomorrow I'll send them photos.
  10. LadyA

    LadyA Registered User

    Oct 19, 2009
    Frankly, I'd send copies of the letters your mum has had, and a very detailed email description of her situation, explaining that you have photographic evidence, but haven't sent it YET to protect your mum's dignity, to her MP, and maybe the local media.

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