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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. Linton

    Linton Registered User

    Jul 27, 2019
    104
    What a difference a reasonable night's sleep makes... First time for ages bed at 10..not up till 5...can't believe the difference.. But at the same time I know tonight might be different.. I got no shouting and swearing this morning.. (not me!!!) and a pleasant cup of tea... A little oasis in the desert... Xx
     
  2. PalSal

    PalSal Registered User

    @Fishgirl I know what you mean. I too feel quite envious of the lives my friends lead; lives of travel and pleasure in their retirements. I am fortunate in that my process of living with this disease has been a long one. With God's help I have been able to have trips on my own and this summer I took a carer with me on a 10 day Italian holiday. It would not have been a holiday without this lovely carer. I had a wonderful time and there were moments of joy for my husband but over all he was fairly anxious with all the new surroundings and he was out of his comfort zone.
    I do feel great sadness when we have another loss.
    One of oldest and dearest friends does an annual Thanksgiving celebration. It is a big party where we see lots of our oldest and dearest friends of our married life and their visiting children. We have always looked forward to it. But last year it was a complete disaster for my hubby. He was very anxious, it was too loud, too many people (who he could not recognize or connect to them....yet that was part of the issue, he somewhere in his mind, he knew he should know them) I have warned the hostess that we may not attend this year, she was very disappointed and she suggested that I came on my own. (I often do things on my own) But this feels like something we always had as a couple together, going without him seems unfaithful and lacks solidarity. It is another loss along the way not to celebrate this Thanksgiving together. And my children are struggling with it too that smaller more quiet events are more what he can do. I have not decided as yet, but am leaning for not going at all.
    I continue to live my life, which is not the life I thought I would have. But even with these efforts, I make to have my own life, there are some situations which bring the loss and sadness of our situation to the forefront.
    I am truly sorry you are feeling so bad, I hope that you can find a way to give yourself a small holiday or a special treat. It is important that you continue your life.
     
  3. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    479
    Female
    Basingstoke, Hampshire
    I try to put on a happy face and be positive with friends and family but I'm sure there are times when they go away thinking "She's turning into a grumpy old woman". But I can't help it. It does get you really down.
     
  4. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    479
    Female
    Basingstoke, Hampshire
    That is so true. I wish I could explain that to my daughter without her going off on one. She has twin 4 year olds and doesn't really see just how tiring her dad is.
     
  5. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    Hello my lovely, I just wanted to say that I think you had a poor experience with the care home manager. It was definitely not the place to put your loved one. No one should have to interact with other residents, this should be a gently done interaction & introduction; adapted to the needs of your PWD. I think you’ve had a lucky escape.

    Can you not ask adult social care for a needs assessment as you are entitled to4 weeks a year funded respite? A good social workers support is invaluable.

    Care homes that cater to dementia are not always the ones with the chic hotel like decor I found, infact a little battered at the edges- but more funding is placed on care & wellbeing. Try the CQC care home ratings for your area, to make an informed choice. I googled care homes specialising in dementia when I was searching, social services had a list available of council approved homes.

    I guess if you wanted to pay extra on top you should be able to do that. The thought of my lovely Dad going into a care home for respite that specialised in dealing with PWD did break my heart. But Dad has settled here permanently & I see the loving way the carers deal with each persons issues & demands.

    I hope you find a place like this... I truly do.
    Finding a good fit is really important. Even Dads social worker was impressed & amazed at the care home.

    I also agree totally with you on my comparison of a toddler, there is no joy to be had in watching this degenerative disease destroy another person. It was the stubbornness & repetition of questions & the physical stage that had a slight comparison; as nothing else in my experience can relate to those certain degenerative behaviour issues. I hope though, that you still get the odd glimmer of your loved ones personality; though this to is heartbreaking

    Sending my love & (((hugs)))
     
  6. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,409
    East of England
    Oh dear, this thread has really resonated with many of us and today I have had to leave him on his own downstairs to preserve my sanity and save him from my nastiness. He is on one of his getting up early days which would be wonderful if he were of sound mind. Yesterday when his old friend from Australia came to visit he was on one of his getting up late days, difficult to rouse and not awake. I just loathe this life of constantly having to change my approach, adjust to whatever state he is in, constantly cater to his whims, listen to his nonsense over and over again. He is trying to make contact I know, which makes it even worse. There is no end to this merry go round, and thank goodness I have a respite break coming up or something might give. That’s my rant for the day and I feel better now. I suppose I had better go and tend to him or he won’t eat.
     
  7. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    I keep saying it, I am totally in awe of what you amazing people do. I find myself humbled at the love & patience tended from day to day, hour to hour, minute to minute. No one can fully understand until living with/ in this situation. I keep reading others posts so I can have some insight into the issues others face & hope that one day I can put my knowledge & my own experience to good use.

    So my lovelies today I hope improves for all of you. My heart goes out to you all - sending love & light. I hope that something today makes you smile, laugh & you are able to feel the sunshine on your face for just a few minutes & breathe.
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,597
    Kent
    When my husband was at his most confused, angry, frustrated and antagonistic I`m afraid we spent many hours in separate rooms.

    These emotions were always directed towards me and sometimes I felt if I breathed out I should have breathed in.

    We lived on the flat so I could check on him every time I went into the kitchen or bathroom and sometimes he looked up and welcomed me and at other times he was in his own world.

    I had a television, radio, phone and computer in our bedroom, which is where I sat, and my husband was in the living room. He rarely came to look for me.

    Perhaps I could have handled it better. I`ll never know. All I did was to try to prevent flare ups which were dreadfully upsetting to both of us.
     
  9. APPLEANNIE

    APPLEANNIE Registered User

    Mar 20, 2016
    15
    I feel just like you I am becoming a horrible person shouting and losing my patience I do not recoconise the person i have become.It is driving me crazy i keep telling myself he can not help it But I want to scream What about me .When people come for a short visit they do not see what is really happening in our house. I am running around looking after him al day while he just sits in the chair watching me. No conversation no nothing. Can not leave the house I feel I am in a prison I am sure their are thousand of people in the position. Went in respite for 1 week it did not help seemed much worse when he come home My thoughts are with anyone in this possition.
     
  10. Palerider

    Palerider Registered User

    Aug 9, 2015
    719
    Male
    North West
    I think I have surpassed the days of 'loosing it' now, I am passive all of the time and focus on that more when mum throws a wobbler. My avatar shows what I feel like inwardly, but outwardly I have become an expert at remaining calm no matter what mum throws at me when her mood changes. I'm sure this isn't a good thing, but it saves alot of upset for me and for mum.

    There are times when I can't hold onto my temper and then I find it easier to walk away, breath and then start again, better that than allow her to press the wrong buttons. Anything for some peace.
     
  11. Fishgirl

    Fishgirl Registered User

    Sep 9, 2019
    101
    Good morning everyone :)
    Crikey I was really surprised when I saw all the posts since yesterday, it really did strike a chord! I was relieved that maybe I am still the decent person I always thought I was!:) I’d say my hubby is in the second stage of this unique illness now, that’s just my conclusion from coming on here because he adamantly refused to go to his last appointment at the hospital, and they had cancelled 2 appointments before that so it is about 9 months since anyone saw him, apart from the chest clinic. We have a doctors appointment on Friday though so hopefully we might get somewhere with that.
    He stopped wanting to socialise at all about 2 years ago, but didn’t seem to mind me going out, but gradually he started being awkward about it , phoning me and saying when was I coming back and that I’d been hours, even though I’d only just got there, and then being annoyed when I got home, so it wasn’t worth the aggro anymore! I have a good friend who lives next door, who luckily also keeps fish like me, so she rings me to say she has a problem so I escape round there for an hour sometimes and he seems ok with that and remembers where I am. Thank you to all you lovely people for all your support it really does help!:) xx
     
  12. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,409
    East of England
    Friday I lost it over a stupid argument about whether I should drive to the Audiology appointment, today I am going to pick up new winter pyjamas for him and when he asked me if I was driving I just said yes. And that was that, he is happy and I can walk. Love lies to the rescue again but it’s a sad sign of the rupture between our communication. I have just had the devil of a job with getting him to eat breakfast, scrambled egg too difficult to swallow, but again if I feed him and remind him to sip his drink he can swallow fine. I found out that he had come down earlier this morning, made himself a cup of tea and taken it back to bed, this person who can’t do anything for himself. I found tea spilt all over the carpet in the bedroom, cleaned up as best I could. Next minute he is asking for cups of tea and can’t make it. I don’t know what these supplements have in them but it’s as if he has taken something! He has been very odd the past few days and I am wondering if some more brain connections have been damaged affecting his functioning.
     
  13. Fishgirl

    Fishgirl Registered User

    Sep 9, 2019
    101
    Hi Grahamstown,
    Isn’t it amazing how they can accomplish something that they supposedly can’t do when it suits them! Like appearing quite normal when someone comes to visit, that one always dumbfounds me, how can that happen when the rest of the time he can barely remember his own name???:eek: I have to hide OH medicine now because I caught him taking it again when I’d already given it to him! X
     
  14. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    184
    No they don't do they? A short visit and the PWD in 'hosting' mode gives little hint of the day to day grind!
    DD2 in particular feels more sorry for her dad who has this horrible disease, which is an understandable emotion, and obviously I'd hope she'd feel like that about me had the position been reversed. DD1 is in the NHS and more insight but still loves the toddler analogy!
    Maybe offer your DD to take the 4yr olds on a lovely holiday for a week while she looks after her dad?;)
     
  15. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    184
    You may be right. I did not particularly take to the man, but nice modern building, good location and reputation for good food!
     
  16. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    184
    I am guessing that when its respite only some want to take only the easiest guests - early dementia. Short sighted though as it's those who are requiring more care who are likely to be long term residents in the future.
     
  17. lilypat

    lilypat Registered User

    Mar 1, 2019
    208
    Female
    Yorkshire
    Hi I too have blocked family on Facebook as I am totally fed up seeing the wonderful places that they go to and the things they do .yet cant call to see OH .their own brother . I felt very guilty about it at first . But that soon wore off I only keep Facebook to see and hear about our grandsons lives who live miles away .
     
  18. TNJJ

    TNJJ Registered User

    May 7, 2019
    468
    What is DD??
     
  19. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,976
    Suffolk
    Darling Daughter.
     
  20. TNJJ

    TNJJ Registered User

    May 7, 2019
    468
    Thanks
     

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