1. Lulu

    Lulu Registered User

    Nov 28, 2004
    Been hanging around here for a long time now ...at least 12 years, but have tried to help others if I have the experience to comment. Cared for my Mum for all of this time, living with us, but we placed her into emi care 2 years ago. We were unable to manage her problems, mostly during the night, the emi were unable to manage her problems which became 24/7 on admission and now she is in behavioural support unit - who are having big problems with non-cooperation. She is deteriorating.

    Mum is still aware. I do not believe that her dementia state has changed that much since she left us, two years ago, but torment due to the move (s) has done a lot of damage. I know that this disease is progressive, but how can I reconcile myself to the fact that I believe that had I not sent her away, she would not be so tormented, would still have full appetite? My instinct is that this is no major progression, rather she is reacting to her circumstances. She is still compliant for me, on the whole.

    Different and increasing meds are tried, without effect of evening out her mood. She becomes stupified but the torment remains. Can this, IS this, due to continuing awareness? Could she, WOULD she do better back with us? She is not eating/drinking, and not allowing staff to care for her. For two years.

    As I ask this, I do wonder how I could possibly manage all this at home now. Is there someone out there that can recognise my own torment?
    Is there anybody out there who knows what I mean? I simply cannot carry this worry any longer.
  2. TinaT

    TinaT Registered User

    Sep 27, 2006
    #2 TinaT, Nov 2, 2015
    Last edited: Nov 2, 2015
    Dear Lulu,

    Does it help that I and I'm sure many, many others have also gone through the same torment for the exact same reasons? So many of us carers suffer so greatly knowing that we are between a rock and a hard place.

    I also felt that my husband had awareness and that I could have changed things for the better for him. However my husband couldn't cope when I brought him home for weekends out of the care home. Within hours he was pacing around, didn't know where he was and all the terrible behaviours and fears wrapped themselves around him even more tightly. So whether he was in a care home or cared for by myself at home, I could not stop or change anything.

    And I'm sorry to say you would not be able to change the situation much for your mum if she did come home to you.

    What a terrible illness this is for both the sufferer and for the carer who is left racked with guilt, guilt caused because we we love them so much and really cannot put things right for them.

    Try to put your mind at rest. You are a wonderful daughter doing her very best in an impossible situation.

  3. Lulu

    Lulu Registered User

    Nov 28, 2004
    Thank you TinaT. It's desperate, it really is/
  4. Misstep

    Misstep Registered User

    Oct 7, 2015
    South Wales

    I empathise with your agony, although my Mum is at an earlier stage. She's got the same issue and has just ended up in hospital with dehydration. Sadly, the loss of appetite and thirst is one of the symptoms of the disease and is not likely to be a result of any action that you or anyone else has taken. It's almost impossible for a family member to judge what is being eaten or drunk. Mum always had a cup of tea in front of her and I cooked her a carefully nutritious meal every day, before she was recently taken into hospital with severe dehydration. I then discovered she'd lost a lot of weight as well. You can only do your best & sadly, with this disease, nothing you can do will really make a difference. Don't beat yourself up.

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