1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. mandyp

    mandyp Registered User

    Oct 20, 2004

    I don't imagine that anyone will be able to help, but it's worth a shot!

    When asked, Mum won't sit down, in particular on the toilet....which is an issue! Dad actually had to let her soil herself today as he couldn't get her to sit on the toilet, a point blank refusal, she hit him and said 'NO'.

    I had her yesterday and spent 20 minutes trying to get her to sit on the loo, I tried 'look at me' as I pretended to sit. She kept saying 'yes' but didn't do it. I gave up as she was getting upset (as was I).

    Dad is having the same problem and during the night he spent 40 minutes trying to get her to sit on the loo, she finally did, but didn't 'go'. They went back to bed and she wet the bed.

    Neither of us feel that we can leave the house with her while she's like this and don't know what (if anything other than deterioration) is causing it.

    She has started to feel unsteady (we think) as she reacts to different floor surfaces (i.e one room to another, carpet to tiles) and treats this like a step. I'm guessing there could be a similar issue with understanding height etc with the toilet.

    Ironically yesterday when I took her out of the toilet and asked her to sit on the sofa, she sat down instantly (aaargh!) Although she doesn't always sit on anything when asked.

    I called Dad today at 12:30 and he was just putting breakfast out as it had taken so long to get her ready and cleaned.

    Anyone got any ways we can get her to sit on the loo?

    She is now getting worse on a daily basis, it's so hard.

    Thanks in advance.
  2. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    I've not had to deal with your issue but is it possible she's finding the toilet seat too far down to sit on? Here they have a type of booster seat for people who have difficult sitting and standing. Perhaps the toilet looks too insubstantial and doesn't have any arms. A booster seat might help.

    Otherwise, is your mother wearing any incontinence pads or pull up underwear? It might be the time to consider it.

    Someone else who has actually dealt with this will probably be coming around.

    Good luck.
  3. ella24

    ella24 Registered User

    Nov 9, 2008
    South Coast UK
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I was wondering if a touilet Frame might help Mandy. Something to hold on to at the sides to give your mother more stability. Also perhaps a raised seat, probably similar to what Joanne was refering to, so your mother doesn`t have so far to go down. Some toilets are quite low.
  5. albiecarr

    albiecarr Registered User

    Sep 21, 2009
    you could try changing the colour of the toilet seat to black to make it stand out from the rest of the system it might help her to see it and realise where she needs to sit also toilet frames are a great help some of the toilet frames you can buy actually have black seat already so might be worthwhile killing two birds with one stone.
  6. mandyp

    mandyp Registered User

    Oct 20, 2004
    Thank you, I've had a look at the raised toilet seats with handles and think this could indeed be the very thing, Dad has to phone SW tomorrow regarding his respite.

    I'd have ordered one myself....but payday is Friday:(

    Dad is going to ask SW if they will provide it (I suspect not since they've provided nothing in the way of support so far!) It's worth a try though.

    Thanks again, I'd have had no idea such a thing existed without you guys, hopefully this will help:)
  7. heather2

    heather2 Registered User

    Sep 21, 2009
    I went through exactly the same problem with my husband and i can really sympathise with you because it is so upsetting. I had excellent support from SW OT etc but none of the aids for using the toilet worked for him. My experience doesn't mean that you shouldn't try what's available (and there is stuff available fromNHS home loans), but I believe the refusal to sit on the toilet or if you achieve the sitting but then nothing happens is because your mum may have now forgotten what the toilet is for. (This is just my opinion based on what I have learned of dementia and its condition) You should maybe ask to speak to a continence advisor (through your district nurse) for advice and if she thinks you should get continence pads or pull ups also kylee sheets for the bed etc.then they will be delivered to your home. I notice your location is Scotland so not sure if you have the same system. :confused:
  8. larivy

    larivy Registered User

    Apr 19, 2009
    heather2 my mum did not like the toilet seat because it was so hard. i bought a padded one which she and every one else loves because it dont hurt when you sit on it. i dont know her build but mum is very slim. you can buy them from disabled shops but they also do them in the cheap shops for about £3 they dont last long but its worth trying before you buy a dearer one. good luck larivy
  9. heather2

    heather2 Registered User

    Sep 21, 2009
    Thank you for that idea Larivy. I appreciate your reply. I'm afraid my husband is now no longer able to use a toilet, but I'm sure mandy may make use of your excellent suggestion.:)
  10. larivy

    larivy Registered User

    Apr 19, 2009
    sorry heather got a bit muddled larivy
  11. Jessy

    Jessy Registered User

    Aug 29, 2006
    toileting issues

    My mother likewise is having difficulty using the toilet, even with help in her care home. Her memory is so bad she forgets what she's there for and cannot follow the instruction to sit because her brain and body are no longer very coordinated. If we have to toilet her during a visit it's a nightmare! She doesn't know in what order to do things, can't remember what the pads are for and may do something completely different like dance,bob up and down or keep trying to flush the loo. We are going to ask the home to provide pull-ups because she keeps having accidents. Her en-suite taps have been shut off because she always leaves them on but we have no water source in the bathroom if we visit and try to help.
  12. mandyp

    mandyp Registered User

    Oct 20, 2004
    We did get the toilet seat from Social work, but sadly it hasn't helped.

    Mum doesn't know what to do and trying to get her to sit (anywhere) is still an issue. Toilet/sofa/her chair are all impossible.

    She will quite simply sit when she feels like it, but I do agree that I don't think she knows what the toilet is for. Mind you her perspective of heights, carpets etc is very bad, it does look like she just doesn't grasp the difference in heights, different floorings etc.

    Sadly just another thing Dad is having to cope with.
  13. essex51

    essex51 Registered User

    Nov 9, 2009
    Dear Mandy
    Often individuals perception is affected as the disease progresses. I would suggest an OT might be able to advise you however it sounds like your Mum may have lost her skills in relation to toileting and maybe as others have suggested using continence aids will help make the whole situation less stressful for you all. Sorry to not offer a solution that is more positive.
    Essex 51
  14. milly123

    milly123 Registered User

    Mar 15, 2009
    hello mandy my husband was the same it almost happened over night he just didnt reconise the toilet and refused to sitdown on it and in a matter of days he also wouldnt stand to wee in it also and with in weeks was doubly incontinent milly
  15. Patcham

    Patcham Registered User

    Oct 8, 2009
    My Husband K

    I`ve had all of these problems.. sitting on the toilet.. I shave, wash,talk to him on there. He needs help,somtimes to get off, so I say "I`ll get you off when you`ve been to the toilet(or words to that effect!)

    Everything I have done in the 7 years since his diagnosis, is to try to keep him at home and make his life as good as I can, however, to do that, I have had to distance myself and now, in the later stages, I employ a carer full time and distance myself.

    that makes me feel guilty.
  16. zeh

    zeh Registered User

    Sep 19, 2008
    Identical situation

    I realise it is a couple of months ago since you posted this but I just wanted to say that my husband started to do exactly the same as your Mum last week. He hovers over the loo but won't sit (he has sat to pee for a long time now). At first it was just nights when he was not really awake but it's now throughout the day and he reacts the same for chairs, sofa etc. He is still highly articulate most of the time and he has said on more than one occasion that he is trying but his body is not reacting. In other words, he knows what he wants and needs to do, but the message isn't getting through to his muscles. Sometimes, when I'm trying to guide him and say, for example, 'shuffle backwards', he'll start coming forwards... I'm also very aware that there's no chance if he starts to sense my impatience. He just freezes.
    He also has a problem with changes in carpet patterns and the metal strips in doorways, acting as if they are barriers he has to get over.
    I thought this a lot to do with his eyesight which deteriorated recently having had a detached retina, but it sounds as if it is just another feature of dementia.
    So, sorry, no help really other than to know that your Mum is not alone in her symptoms. As others suggest, I fear the dreaded incontinence aids may actually reduce the stress. Good luck.

  17. Wolfie

    Wolfie Registered User

    Dec 6, 2007
    Another perspective

    Hi there, my husband has just started havning trouble recognising the signals from his body - he keeps trying to pee when he needs to
    sit down. This can go on overnight and well into the next day. I'm asking him now if he's had a 'sit down' but he's understandably a a bit resistant to being reminded. It's either that or sleepless nights going to the bathroom with him as he's so woozy in the night he doesn't always pee in the pan. Amazing how love survives.
  18. welshchick1968

    welshchick1968 Registered User

    Dec 29, 2009
    Hi, Mum has had problems with perception for the last year or so. You can say "sit in the chair" and she will look at you as if she doesn't know what a chair is, or will go and try to sit down next to the chair rather than on it. The same happens with the loo, but I don't think it is a problem with the height of the seat etc - it is how she interprets what we are trying to tell her to do. I have spoken to the Occupational Therapist about this and she did say that spacial awareness can be an issue with AD. The same happens if you ask her to put her cup down etc - she tries to put it down approx 2 inches form the coaster etc., but as far as she is concerned she has put it in the right place.
  19. Lynne

    Lynne Registered User

    Jun 3, 2005
    Patcham, please try not to beat yourself up about distancing yourself.
    It's a survival mechanism, if you didn't do it you'd be in floods of tears all the time and unable to do the things which need to be done.
    I did the same (and yes, felt guilty about it :cool:) when I was caring for my Mum at home.
  20. Dgirl

    Dgirl Registered User

    Sep 6, 2007
    Dublin, Ireland
    Its so nice to log on here and find someone going through the exact same issues as me and my Dad are with Mum. You are right, she just won't sit down unless she wants to. Then complains that her legs and back are sore - we just can't win. Getting her to sit on the toilet is also an issue - not so much during the afternoon (she now sleeps most of the morning) but in the evening and especially when going to bed - that's the hardest because at that stage we are all tired and biting the tongue gets harder. We've had a few "leaks" but its definitely getting harder.

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