1. NancyD

    NancyD Registered User

    Mar 23, 2008
    42
    North east
    My mother has been diagnosed as having vascular dementia. Her story is a long one but it seems her all consuming problem is that she has a toilet obsession. Following a fall( I think it may have been a stroke) she suddenly began obsessing about going to the toilet and needing the toilet and I cannot underestimate what I mean about this. Sometimes she is actually on the toilet and asks to be taken to the toilet just as an example.
    The thing is she is quite aware of her surroundings and knows she is somewhere she does not want to be and says she wants to kill herself constantly. She begs us to take her home it is truely heartrending to visit her.She recognises all her family can still answere crossword puzzles. The family are torn apart because we have had to have her looked after her in a home.We are not happy about her nursing care.We recently had to call for an ambulance to take her to hospital and is turned out she had steptoccocal pneumonia.Has anyone else experience of toilet obsessions,lack of nursing care by care homes,relatives threatening to kill themselves/wishing they were dead?.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,550
    Kent
    Hello Nancy.

    The only experience I share is my husband wanting to die.

    He always says this in times of deep distress or deep depression, but deep down I know he doesn`t really mean it. In fact he is frightened of death or what he perceives death to be.

    Sometimes when things are a bit better for him, he tells me how thankful he is for his good health. :)

    Your mother sounds very unhappy. Might this obssession with the toilet be because she is frightened of having an accident? Or is it because she worries she might not be able to get to the toilet under her own steam? Or perhaps it might be a more deep seated problem.

    Apart from asking for medical or therapeutic help for her, I can`t really think of anthing to suggest.

    Someone may come onto the Forum who may have better ideas. I hope so, it must be very distressing for you.
     
  3. hendy

    hendy Registered User

    Feb 20, 2008
    506
    West Yorkshire
    Hi Nancy
    So sorry to hear about your mums confusion and distress. You have raised so many issues. Dementia affects everybody differently. My Dad has Vas Dem and did suffer from obsessions of various kinds. If he ever had thoughts about suicide he never voiced them, but I know it was something he considered. It must be just the most appauling news to find out you've got a diagnosis of dementia, so no wonder your mum feels so terrible.
    Is her doctor aware of her 'depression'? is it being treated?

    As for the issues regarding care homes. I had concerns about the one my Dad was in and I 'got on' to Care home Laison officer of social services. They took my concerns seriously and have kept an eye on Dad and some improvements were made.There are still issues on-going. Perhaps this is something you can take up with social services. Issues like these continue to be a concern to carers.
    Keep posting, because more help will be along soon.
    take care
    hendy
     
  4. NancyD

    NancyD Registered User

    Mar 23, 2008
    42
    North east
    She is terrified she is going to wet herself. The new home she is in only take her to the toilet every 2hrs. So most of the time they are ignoring her cries to be taken to the toilet. The thing is sometimes she might really need to go to the toilet. They say this is attention seeking behaviour. She has had bladder scans and her bladder is empty but she still asks to go to the toilet.It is something in her brain that is causing her toilet obsession.
     
  5. NancyD

    NancyD Registered User

    Mar 23, 2008
    42
    North east
    My mother cannot walk and so depends upon the carers in the home to take her to the toilet. She has bedsores on her bottom from sitting in the same position.She refuses to take her tablets.Most times we go to visit all she says is "will you take me to the toilet?" "Im going to kill myself tonight so this is the last time you will see me" ."When can i go home?" "Who put me in here?" "I've got 5 children why cant you look after me?"
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,550
    Kent
    Nancy, she could have a `feeling` she wants to go to the toilet and even if her bladder is empty, the fact she is so frightened of wetting herself must be awful for her.

    I wouldn`t like to wait 2 hours, I can tell you. Perhaps if the staff were less rigid in their approach to toileting, your mother would relax a bit.

    I hope she doesn`t limit her fluid intake as a coping strategy as this could prove dangerous.

    I would follow Hendy and make your concerns about her care known. It`s enough to have dementia without having her fears treated in such a careless manner.

    Poor woman, no wonder she`s stressed.
     
  7. hendy

    hendy Registered User

    Feb 20, 2008
    506
    West Yorkshire
    Hi Nancy
    I'm not sure I can advise you about the toilet obsession. As the home say, rather negatively, it could be 'attention seeking'. Perhaps mum needs more reassurance or distraction. What are they doing about it? The bed sores sound rather worrying, what have the home done to try and improve things there? You should be able to ask these questions and get some answers from the care home manager.
    Take care
    hendy
     
  8. NancyD

    NancyD Registered User

    Mar 23, 2008
    42
    North east
    The thing is she can be taken to the toilet and no sooner is she brought back but she is asking to go again. No-one seems to have had anyone with such an obsession before and believe me it is VERY tiring. We try to distract her for as long as we can but she has a one track mind. When she could walk she spent her whole day going back and forth to to the toilet.
     
  9. NancyD

    NancyD Registered User

    Mar 23, 2008
    42
    North east
    Thank you for your replies. Believe me it helps. I am off work with depression at the moment. Apart from my mothers problems i have recently suffered the loss of my first grandchild through stillbirth he was due to be born on 11 April but was stillborn on 17th Feb.We are heartbroken.
     
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,550
    Kent
    I am so sorry about the loss of your grandchild. It is the worst possible experience anyone could have.

    AS for your mother, would she consider wearing a liner, just in case?
     
  11. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,103
    Toronto, Canada
    My mother went through a fairly long phase of constantly wanting to go to the toilet. She would go and then 5 minutes later say she had to go again. If I said she had just gone, she would simply repeat she had to go. Then, when she was on the toilet, she would look at me plaintively & say "There's nothing there". This went on for months and it drove me crazy.

    The home she was in at the time did a number of urine tests as they were concerned she may have had an infection.

    In my mother's case, we realized that she asked to go to the toilet when she was feeling stressed or not wanting to be where she was at the time. It was her way of coping as she would end up in a small, quiet space. It was also her way to getting out of something she didn't want to do. If we went for walks, I would make sure she went to the toilet first. Invariably, 10 minutes into the walk she would say she had to go to the toilet. At first I used to believe her & we'd go back to the home. Once she was in her room, the toilet was completely forgotten.

    Maybe this is what your mother is doing also, using toileting as a refuge. Perhaps you can suggest this to the home. Is it also possible for you to suggest to your mother to use a "sanitary pad" in case of leaks? That worked for a while for my mum. My mum really preferred stuffing in about what seemed to be half a roll of toilet paper.

    As for your concerns about the care she's receiving, can you sit down with the staff & detail your concerns in a non-threatening manner? It's so hard to do so as some staff can be so defensive. I try to use the "I was wondering about....Is it possible that.....Can someone tell me why......" approach. The bedsores are a huge concern, I think.

    As for her threats to kill herself, my heart goes out to you. Please try to remember it is her disease talking, not your mother.

    Take care.
     
  12. Christinec

    Christinec Registered User

    Aug 8, 2007
    214
    Hi,
    My Mum has been saying she wishes she was dead for many years. I should be used to it by now but it is very distressing to hear someone saying this. I think I might feel the same in her place. She is in her late eighties now and has been so unhappy for so long.

    But my sympathy goes to you as it is very hard to know that some one is saying that they are so miserable that they want to die and no matter what you do they will feel the same.

    Very sorry to hear about the lose of your grandchild and hope that you are given some support to deal with how you are feeling. The effect of this disease on the family is hard and you also have this added sorrow.

    My Mum becomes obsessed about tollets and accidents when she is stressed - mainly if she has to go somewhere she does not want to go but I cannot advise on how to cope with this continually. Pads reassure my Mum although the carers in the home say she does not need them most of the time. A lot of her concern was about having an accident although her ability to worry about this is declining as the disease progresses.

    Take care.
     
  13. hendy

    hendy Registered User

    Feb 20, 2008
    506
    West Yorkshire
    Hi Nancy

    I was saddened to hear about the loss of your grandchild. You must feel like your heart is breaking. You are under so much strain at the moment. I completely agree with all of the advice you have been given so far. One thing seems absolutley certain is that your mum is suffering a great deal of anxiety. With dementia, the anxiety heightens and compounds the confusion and it can be managed with good nursing. When you feel up to it, do ask some searching questions. Its your mums right to get the care that she needs. As Joanne said, there are ways of asking and you dont have to go in with 'all guns blazing'. It is possible to make things better for your mum.
    take care
    hendy
     
  14. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Hello Nancy,

    I can't add anything to what's already been said..

    Except that I would be very concerned about the bed-sores..the NH should be taking appropriate action to deal with those..if they are on her bottom then she should not be sitting for long periods of time..and should have pressure relieving cushion/mattress. Bed sores can be extremely painful too..so it could be if mum is sat on the loo the pressure on the sores is relieved..hence less pain. Just a thought..

    Sorry you're having a really rough time at the moment. Take care of yourself..

    Love Gigi xx
     
  15. NancyD

    NancyD Registered User

    Mar 23, 2008
    42
    North east
    Thanks everyone for your advice and thoughts.
     

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