1. Carla

    Carla Registered User

    Oct 18, 2006
    9
    London
    I have just got back to London, where I live and work, from Yorkshire, where my parents live. My Mum is 64, Dad is 69 and Mum has had AD since she was about 58. I spent the week with her last week and it was really traumatic. I decided to log on here as a friend suggested it might talk to someone who understands. My Mum and I were very close and even though I live in London, and have done for 11 years, I go home every 3 weeks. Coping with her illness and diagnosis was awful to begin with as my Grandad had dementia so we knew what was ahead. Mum just cried all the time and couldn't explain what she was feeling. Up until recently she has been much calmer, just very confused and repeating herself and gradually deteriorating, but over the last year has developed a problem going to the toilet. She goes on average every 5 minutes. This is causing so much stress for my Dad, who is her carer. I took the week off to care for her to give him a break and it was overwhelming. She was putting her hands down the toilet and taking out what was in it and leaving it either in the bin or in the sink. To keep going with her every 5 mins was exhausting. Dad doesn't do this but I wanted to see whether she was actually going or not, most times not.

    The vision I can't get out of my head is my Mum crying after I had shouted at her not to put her hands in the toilet as I was wiping her, which she doesn't seem to do very well. It is haunting me. I know that she probably won't even remember but every time I think of it I want to cry.

    I have a very busy and interesting job but no partner or children and I sometimes wonder if I should give it up and go back to live nearer Mum and Dad. I love my life here and do try to help as much as I can by going back weekends and holidays but am torn between wanting to help and having my life. I have always been relied on by my family and this feels very claustrophic at the moment but I feel very guilty also.

    It really helped to just get this out!

    C
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Hello Carla, and welcome to TP

    Some random jottings about your post, in no particular order....

    Has your mother been checked for a urinary tract infection (UTI)? Going to the bathroom but not going is a common sign (although it could, of course, just be the AD). You need to go, but there's nothing to go with.

    You're right, she probably won't remember that you shouted at her, but I know, from personal experience, that that won't make the guilt monster go away. Unfortunately, most of us aren't saints, and these things are going to happen - if you can you need to accept that you are fallible and move on. Easier said than done I know.

    Would your mother, if she were in her right mind, expect you to give up your life to take care of her? If she is a loving parent I doubt it. Having said that, I should probably mention that I live 4000 mile from my mother (who has had several strokes) and I didn't give up MY life for her, so I'm coming from that side of the argument. In my defence, my mother sometimes says when I visit her "you do have a life away from this, don't you? I wouldn't want you to be doing this the whole time" so I have some evidence for my belief.

    Unfortunately, as a single woman, you probably are the designated "helper". For your own well-being, you need to block off time for yourself, as well as for helping others. I believe that stress and resentment can make you physically ill, and then you won't be any use to anyone.

    Hopefully someone will be along with practical hints to deal with the "taking things out of the toilet" issue.

    Jennifer
     
  3. Carla

    Carla Registered User

    Oct 18, 2006
    9
    London
    #3 Carla, Oct 18, 2006
    Last edited: Oct 18, 2006
    Thank you so much Jennifer, that really helped. It's amazing how much it helps having someone just say it's ok.

    Mum has had tests for various urinary problems but the doctors say they don't know what it is. We keep trying out different possibilities, IBS, other female problems but no medication has yet worked. Has anyone else dealt with anything similar?

    Thanks
    Carla
     
  4. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    I think that when it comes to taking things out of the toilet I'd say it's time to look for a home, but perhaps you and your father wouldn't agree.

    Does she have any carers from Social Services?

    Lila
     
  5. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Carla,
    I think this is something that you have to make a decision on, and then put it to rest - not keep questioning if it is the right one - cos it will drive you mad. The guilt will not go away - it will stay in the back of your head 'If I had given up work then.....' You are obviously giving dad a lot of support as it is. Does he have any other help - day centre care, social services, respite.?If not, maybe you could help him get organised with these.
    - sorry, don't agree. Mum has forgotten what is and isn't appropriate. My mum used to 'clear up' after the dog, if we didn't watch her. She used to constantly visit the loo, and eat the soap. What would happen if dad locked the loo door? (Put a bolt high up on the outside if necessary).
    Keep posting Carla - you will find lots of people here who know where you are coming from.
    Love Helen
     
  6. alex

    alex Registered User

    Apr 10, 2006
    1,665
    Hi Carla

    Welcome to tp, i hope you find it as helpful as i did, its great to have somewhere to go to unload, shout or cry, knowing there is always someone here that understands how you feel.

    My experience was slightly different to yours but the guilt lies with us all, however, on the subject of giving up your life, i would say that my experience of AD has lead me to talk to my son now.............and i've told him that come what may, i love him way too much to see him change his lifestyle for me and that should anything happen to me (whether thats death, AD or anything else that might affect me in old age) he's not to spend one second feeling sad, unhappy, or guilty............he is to get on with his life, knowing that i'll be happy - knowing he is happy........even if i can't tell him that!

    The point of me telling you this, is that i'm a mother and so is your mum!!!!!
    I'm sure she would want the same, so don't feel guilty, don't give up your life, just do the best you can at the time and try not to look back.

    As for the toilet problem.............is it possible to lock the door and have supervised visits to the loo and maybe try incontinence pads to prevent accidents!

    Love Alex
     
  7. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Carla

    My husband also went through a 'dirty' phase a few months ago. It's so hard to handle, because it goes against all our experience and knowledge of how things are done.

    But your mum doesn't remember 'how things are done', and that's the problem. I think your father has to accompany your mum to the toilet for a while -- maybe permanently. I started to do this with John, and I'm sure the problem was that he didn't know how to clean himself. I think as a result of this he might have had an infection, although the doc didn't find anything. With hindsight, I should have been going with him earlier. Once your mum gets back into a routine, you may find she can cope alone again, as John does most of the time. Or maybe not -- everyone's different.

    As for moving to be near them, I don't know. My instinct would be to investigate all other care possibilities first. After all, your mum may eventually have to go into care, and you would have lost your job and friends. You need your own support network too.

    Don't stress about shouting at your mum. It's so horrifying the first time it happens, but we all lose control sometimes

    Hope this helps,

    Hazel
     
  8. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello Carla

    I agree with others that you should find out what extra help is available for your parents before you considering moving closer to them. You need your support network near you.

    You obviously love your parents and visit often........more often than my brother visits my Mum who is only 5 minutes drive from him.......but that's another story.

    Mum had a habit of blocking the toilets at the home with masses of toilet roll. After 3 days of getting the maintainence man to unclog the drains, I was visiting her and follwed her n, she looked in the toilet and said, "not more water"and proceeded to try mopping it up! She has always had a fear of water and probably thought there was a leak.

    This trait was stopped by a lock being fitted high up on the outside of the door and Mum only being let in with a carer, within a few days, she forgot to check for leaks!

    Kathleen
     
  9. Carla

    Carla Registered User

    Oct 18, 2006
    9
    London
    Thank you to you all for your messages, I just logged on and was overwhelmed by your comments, they have really meant a lot. I already feel better than I did and am starting to be able to see things differently.

    Best wishes to you all

    Carla
     
  10. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Carla

    I'm glad you feel a bit better.

    Kathleen
     
  11. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    Hi Carla

    I am sorry but I do not do bodily fluids but I do have views on the wider issues. You have a life of your own which is clearly important to you. If I may be blunt, your mothers difficulties are relatively short term, whilst you have a life in front of you and ambitions of your own. I am sure that pre AD your mum would not wish you to sacrifice your future happiness by a short term unlimited commitment to her welfare.

    How you reconcile your conflicting emotions is a difficult decision which I do not envy but there is no shame in thinking of yourself. I wish the best for you.

    Hugs

    Dick
     
  12. Helena

    Helena Registered User

    May 24, 2006
    715
    Any good doctor will tell you that " you have a right to your own life " theres no need to feel guilty or otherwise over your parents illness
     
  13. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    That was more or less what I told my mother when she wanted me to go into the toilet with her and wanted to follow me into the toilet, everyone has to draw the line somewhere and that was one of my lines. She had to cope with going to the toilet alone or go in a home. She was still able to understand that.

    It is strange that others were trying to persuade me to "put her in a home" when she had much milder symptoms.

    Lila

     

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