So hard to know what to say

Discussion in 'I care for a person with dementia' started by ellejay, Feb 11, 2015.

  1. ellejay

    ellejay Registered User

    Jan 28, 2011
    Mum has been in care for almost 4yrs. The carers say she's fine, but as soon as she sees me, the relief on her face that I've come to take her home.
    As she's gone further downhill, the destination has changed.It used to be home to her house, then my house & now it's that she has to go because her mum said :(
    I've tried all the usual..........'til you're better, Council fixing the roof, tomorrow...., but we seem beyond that now....

    Today she was saying she had to go to her mum's because her mum looks after a baby & can't do it well.
    Any attempt to distract was useless, mum was locked in a story that got more complicated until in the end she'd seen OH & me with her mum & dad & I'd told her we were going to go "up the road" & she had been looking forward to it & now I was changing my mind.:(

    I don't expect any answers, there aren't any, I just feel so sad that mum will never it seems, have an easy mind.

    The saddest thing of all was when she wailed " I just want to go home, but I don't know where home is"

    Lin x
  2. Katrine

    Katrine Registered User

    Jan 20, 2011
    Oh Lin, there isn't anything I can do other than shed a tear in sympathy. Your poor lost mum. Katrine x
  3. garnuft

    garnuft Registered User

    Sep 7, 2012
    I wish I could understand why this happens.

    My Mam used to like to hear me describe her little house...the lane down the back, the bowling green at the bottom, the cricket pitch across the lane...even while she was sitting in the chair in her own front room.

    'How long have I lived there?' she would ask.

    I hated that she was unable feel any security in her surroundings at all, the only comfort that could be given was by reassuring her that this little palace was all hers...but I don't think she ever believed me or felt any reassurance. :(

    The totally destabilising effect of dementia on a brain, inducing fear, anxiety and insecurity.

    It's rotten Lin, your poor Mum.

    Loadsa a love from me and mine to you and yours xxx
  4. Dazmum

    Dazmum Registered User

    It is so sad Lin. My mum is talking a lot more about her mum and dad. I often think she is upset because she wonders why they don't come and see her, but I won't ever tell her they are gone.
  5. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    Hugs for you Lin - it's so hard isn't it? My Mum initially asked how long she was staying there when she first went into her CH. I went to see her on Monday and at one point she said "I was going to ask you to take me home but I live here now don't I? " - at one time I would perhaps have been pleased she realised / accepted? but oh it was said in such a sad voice I reminded her how she now didn't have to worry about the stairs, meals, being on her own and that we wouldn't have let her be anywhere that she wasn't safe and well cared for - but she sounded so sad and.. maybe ... I was saying all those things to feel better myself..

    We know they are in the best, safest place but sometimes it is so hard to deal with how they see it.
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    It's heartbreaking.
  7. turbo

    turbo Registered User

    Aug 1, 2007
    Hello Lin, it's so sad for both you and your mum.
  8. ellejay

    ellejay Registered User

    Jan 28, 2011
    Thank you everyone x

    Yes, and I feel bad saying mum hasn't settled when we try to reassure others that their loved one will "Give it time" we say :(

    I know, & don't you feel worse than useless !!!

    I don't know what's worse, they can't come or they won't :( (but I won't tell her they're gone either )

    Lin x
  9. Bod

    Bod Registered User

    Aug 30, 2013
    Would she look after the baby for her mother? If you were to buy a baby doll.
    Might settle her down, something to cuddle.

  10. ellejay

    ellejay Registered User

    Jan 28, 2011
    Mum already has a baby doll, Bod, but knows its a doll & ignores it. She also has a lovely toy dog. Mum says it's not real, it's dead :(

    I do appreciate your thoughts though :)

    Lin x
  11. susy

    susy Registered User

    Jul 29, 2013
    North East
    Does the home have visiting pets? That might help as a positive distraction. I'm at a loss as to what to say except I'm not yet in the place you are and can see it hurtling towards me like an unstoppable train. I hate dementia.
  12. ellejay

    ellejay Registered User

    Jan 28, 2011
    I hate sounding so negative & I'm sure these things help lots of people. Mums home has a resident dog that carried on living there when the owner died. Two residents on mums floor also have their dogs living with them.

    Sadly even when she was well, mum was a very discontented person, it's just that then I didn't feel responsible for her happiness. Now there's only me left.

    Lin x
  13. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    Hi Lin I feel for you my mums still in her own home and asks everyday to be picked up and taken home and she's always asking where her mum and dad are it's heartbreaking not much help but wanted you to know I'm thinking about you sending you a hug take care x Annie x
  14. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    My mum was also very much a 'glass half empty' type long before she became ill. Eventually I realised that I couldn't make her happy as the only thing she wanted was to 'get better' which was impossible. But I could keep her safe and that had to be enough.
  15. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    #15 Witzend, Feb 12, 2015
    Last edited: Feb 12, 2015
    She is way past even that now, but my mother went through a long phase of wanting to go and see her parents. Had I seen them lately? (she often used to think I was her sister). I just used to say e.g., No, not for a little while (30 odd and 50 odd years!) + Yes, maybe we could go tomorrow,when the roads aren't so busy/icy etc.
    Sometimes I would say I'd give them a ring later, to see when they'd like us to go. 'We wouldn't want to go all that way and find them out, would we?'

    After a while all these fibs would trip off my tongue as easily as anything. I never felt remotely bad about them, since they kept her happy (or at least not fretting about that particular thing).
  16. ellejay

    ellejay Registered User

    Jan 28, 2011
    For a while my mum accepted that I hadn't seen her mum & dad for ages, or that they were out shopping, but now.......well, she's seen OH & me talking to them. Seen us laughing together & ignoring her.....just now it was :eek:

    Well, she knows what she saw, so I must be telling lies :rolleyes:

    Lin x
  17. Ash148

    Ash148 Registered User

    Jan 1, 2014
    Dublin, Ireland
    My mum blithely told her chiropodist last month that she had spent Christmas Day with her mammy and daddy when in fact she had spent the morning in her nursing home and the afternoon with my sister and brother and their families.

    In the last four weeks, she has virtually lost the ability to communicate: just the odd word here and there, so there is no way to know what she is thinking or what her worries are. She is still agitated some of the time, sometimes completely unresponsive. I never thought during the delusions phase that I would regret her moving on to the next stage but now I do.
  18. ellejay

    ellejay Registered User

    Jan 28, 2011
    Thank you Kassy xx

    I feel permanently wrong footed, like I'm always a page behind.

    Lin x
  19. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    But Lin you are not responsible for her happiness. You're doing the best you can, which is all anyone can expect. If she was always a discontented person, the disease has simply enlarged this. It's nothing to do with you, it's the disease. Please, please get that guilt monster off your shoulder - it doesn't belong there.
  20. SheilaR

    SheilaR Registered User

    Feb 10, 2015
    Newly in this situation!

    My 88 year old mum has only just been diagnosed with mixed dementia, and gone into a home. She asks me to take her home, or says she's going home, almost every time I visit, and, as I am getting her home ready to sell, I find it heart-wrenching. Finding this forum and reading the experiences of others in similar situations is a real help though! I hope my mum will settle, but realise this may not happen, and keep having to tell myself that she's in the best place.

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