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Turning me into a nasty person!

Discussion in 'I have a partner with dementia' started by Fishgirl, Sep 14, 2019.

  1. White Rose

    White Rose Registered User

    Nov 4, 2018
    43
    It's good to look at photos to remind yourself what they were like and how life used to be. Sometimes it's hard to believe that we had that life BD (before the diagnosis). It usually makes me cry as well but it does make me smile sometimes too.
    Mine has grown up kids but months will go by without them seeing or speaking to their dad, I'm sure it's very hard for them as well to see their dad as he's become, so I've given up hope of any help from them and just have to get on with it just the two of us and I'm lucky to have good friends and my daughter who is such a help as often as she can.
     
  2. mobton

    mobton Registered User

    Oct 6, 2015
    8
    I can’t tell you how much I empathise with this . I can’t believe what our wonderful relationship has turned into . There is simply no reasoning with him at all - I just don’t know what to do anymore or how I can cope .
     
  3. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    180
    Maybe youre getting to the end of the line and he needs FT professional care? I didnt think a few months ago I was near that point, but now I think it could be not far off, and its not physical needs, its the unreasonable 'selfish toddler' behaviour.
     
  4. Fishgirl

    Fishgirl Registered User

    Sep 9, 2019
    98
    That’s what hurts the most isn’t it,
    that we’ve lost the one person that we would turn to for support and help through a nightmare time like this, if it wasn’t them that were doing it! I know my OH and I’m sure yours too would be mortified if they knew what they were doing to us! I think Roseleigh is right, you do need to get more professional help before it gets any worse, for your own safety! Good Luck x
     
  5. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,129
    Sending all on this thread (((((((bighugs)))))))
     
  6. Fishgirl

    Fishgirl Registered User

    Sep 9, 2019
    98
    Aww thanks they’re gratefully received:) What a lovely person you are.xx
     
  7. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,129
    My biological mum used to call me her sunshine girl. It’s lovely to be able to make someone feel cared for - even if we haven’t met - your honesty & openness makes connections with so many. Sometimes words aren’t needed just
    ((((((((((((((big hugs)))))))))))))))
     
  8. Dutchman

    Dutchman Registered User

    May 26, 2017
    362
    Male
    Devon
    I’ve just found your post and it seems you’re going through what I’ve been through. 4 weeks ago I had to make the decision to put my wife into a care home. Her dementia behaviour was extreme and I couldn’t cope with it on my own. My beautiful, intelligent wife had turned into someone unrecognisable. I feel extreme guilt and regrets.

    I thought my experience was unique but the forum tells us otherwise. I’m really sorry you feel you cannot cope. The only advice I can give is do not panic into a corner. The doctor, local Mental health team and if you have a local carers team and if really bad social services are all there to help and give advice.
     
  9. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    472
    Female
    Basingstoke, Hampshire
    I can understand this. Our daughter does come and see us but I feel these are "duty" visits. I think it hurts her to see her dad as he now is. I used to get upset that she offered little actual support for me but now I accept that she just can't cope with it. She always was a daddy's girl.
     
  10. White Rose

    White Rose Registered User

    Nov 4, 2018
    43
    It's just so hard isn't it - we have not only lost our soul mates and our 'rocks', but we are dealing with people who are reverting to childhood (except they don't go forward in learning like toddlers, they just go further backwards) with personality changes as well. No-one who hasn't been through it can possibly know how bad it is. It seems like you're constantly having to adjust to a new phase of memory loss and there is no predicting how it's going to go so you can't prepare yourself mentally or practically.
    Please find some help for yourself - my friends told me I should do that and they were so right! I've just started my partner in some day care, first two sessions have been successful. I've also found regular meals and snacks are essential (for him not me!), not too much sugar though. I've found a piece of toast before bed time improves his mood in the morning. Regular drinks as well - decaff coffee and water, try to reduce or remove caffeine.
    The community is with you, you're not alone xx
     
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,129
    I do understand what you are saying, with regards to children; my own children have difficulties in dealing with their grandparents situation. But I found the main cause of their distress was my own distress at the situation & how it the issues caused by the PWD cause me to react.

    I have talked to both children about this & it’s a difficult one. On the other hand as the child of a/ both PWD I have been supportive & infact its been at the detriment of my own family at times.

    It’s a difficult issue, & very emotive. I think this forum is an excellent outlet & source of information & advice but the immense support on this community make it feel like family for me - my TP family.

    So sending love & (((((hugs)))))) to you all
    xxxxx
     
  12. Christy21

    Christy21 Registered User

    Oct 9, 2016
    6
    This is too complicated for me to jump all the hurdles
     
  13. Ethelred88

    Ethelred88 New member

    Nov 15, 2018
    8
    Haven't read the whole thread so apologies if I'm repeating what has already been said.

    One thing I have learnt from caring for my 94 year old mother who is suffering from advanced vascular dementia and Alzheimer's, is doubly incontinent and now bed bound, is that despite relatives and friends thinking they understand, they have NO IDEA what is involved.

    Isn't life's circle strange though. One of my daughters has a new baby and we all laughed when just after a nappy change the baby promptly filled in again. Strange how its not so funny when the role is reversed 60 or 70 years later.

    All the best everyone. You are a great bunch.
     
  14. nanni s

    nanni s New member

    Mar 10, 2019
    3
    Female
    I know how you feel. I stopped going on facebook because I could see all the people I knew going on holiday, going on long day trips out and eating at different restaurants and I felt hard done by but not anymore. I am not so bothered now maybe I am getting used to the isolation of being a carer.
     
  15. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,129
    Just be kind to yourself you can only do what you can do. Each one of us on the forum has a different threshold- being balanced in life when dealing with PWD is nigh on impossible for me. I’m stepping back but it’s because of the cost to my own health; if I’m brutally honest!
    Take care lovely & keep posting we are here to support not judge
    Xx
    (((((Hugs)))))
     
  16. Wee sis

    Wee sis Registered User

    Sep 18, 2017
    7
    I am a survivor!! My OH dementia developed to a stage where a nursing home was the only option. After a false start in a home that couldn’t care for him and 2 spells in hospital he is now in a wonderful home. I returned yesterday from a week of blissful holiday.
    To be honest I’m trying to hold on to the freedom feeling and actually dread reentering the world of visiting a man who doesn’t know me.
     
  17. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,129
    ((((((Sending big hugs)))))
     
  18. Herecomestrouble

    Herecomestrouble Registered User

    Dec 11, 2018
    15
    There is great comfort in knowing that other people know how it is, and share the same kind of feelings, esp when those feelings make us feel so bad about ourselves.
    It is SO tough this business.
    The only thing I can add to what people have already said is that I have found Hugh Marriott’s book, “ The selfish pig’s guide to caring” ( you have to read it to understand why the title is perfect) to be Incredibly helpful. Partly how he describes what it is ( really ) like to be a carer, but also his gentle nudges in the direction of what to do to cope, whether practical things, or states of mind. Acknowledging how bad it is, or can be,is a first step, but moving on from that and finding ways of coping with a situation that is not going to go away soon, is quite another, and one that I continue to struggle with. Which is why his words help so much because they give me hope that there are some answers, even if not ones I particularly want to hear l It is like having a best friend on your shoulder, thinking the best of you, knowing the worst, and encouraging and supporting you all the same.
    I randomly found a copy of it at my local library but have subsequently bought copies for me, friends etc.

    in case you wonder how you are expected to find time to read a book, he acknowledges that right from the start ( which made me laugh and realise I was on to a good thing with the book) and suggests leaving it by the loo to dip into as and when you are there .
    Warm regards to all
     
  19. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,129
    The title made me chuckle!
    Am going to order it!
    Thank you
    X
     
  20. Linton

    Linton Registered User

    Jul 27, 2019
    104
    Hi here comes trouble... Can't wait to order the book... Port in the storm moment... Last night my OH slept from 10 in the evening... "in bed"... til 5 this morning... Hallelujah....!!!!!!
     

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