Dementia’s journey

Discussion in 'I have a partner with dementia' started by Dutchman, Aug 31, 2019.

  1. Dutchman

    Dutchman Registered User

    May 26, 2017
    402
    Male
    Devon
    I always think that my crying has stopped at last and then something happens or I see something and I cry again and there’s no one to comfort me. I miss hugging her and making her feel treasured. She doesn’t relate to those feelings anymore.
     
  2. kindred

    kindred Registered User

    Apr 8, 2018
    2,246
    Of course you miss this. Please spend as much time as you can telling her how much you love her and thank her for what she has brought to her life. This will help you to feel a little better about the visits.
    I often walk round the corridors with residents in my late husbands nursing home, and we sing or say: together we go, together we go … they look forward to it. I often have a queue and the carers tell me they love to see it. Could you try this? Thinking of you with support. You are cared for here. Kindred.
     
  3. Dutchman

    Dutchman Registered User

    May 26, 2017
    402
    Male
    Devon
    I miss her when I don’t visit and I get upset when I do visit. It just a merry go round of upset and it’s all made worse by the loneliness when I get home. The weekend is coming up. Nothing planned to do so another day of emptiness. I could see my wife but I get upset.

    it’s an impossible situation and I’m worn down by it all. I’m beginning to neglect myself as well. Can’t see the point of washing everyday. I eat rubbish and I haven’t touched anything of hers since she left. The only exercise I get is going to the supermarket
     
  4. Pete1

    Pete1 Registered User

    Jul 16, 2019
    164
    Male
    Morning @Dutchman, I hear you, the worst thing is the person that you would turn to for comfort and support in time like this is that person you are missing. It sounds incredibly painful and you seem to be at an all time low.......can you reach out to anyone in your wider family today and tell them how bad it has become for you? I really think you need to......
     
  5. Pickett54

    Pickett54 New member

    Oct 11, 2019
    5
     
  6. Pickett54

    Pickett54 New member

    Oct 11, 2019
    5
     
  7. Pickett54

    Pickett54 New member

    Oct 11, 2019
    5
    I am in the same situation, my husbands health has declined over the last year and it seems to be one health issue after another. He is currently in hospital and I am having to make the same decision as you. I have spoken to Nurses and Social workers and they have said he needs nursing care which a live in carer would not be able to do. I visit daily for 3-4 hours, help with his meals and drinks, it is depressing as my husband lost his hearing totally 2 years ago. I hate to think of him going into to a home, but I have looked after him 24-7 as long as I could, I gave up work a year ago to look after him full time. I totally understand the emptiness and isolation, when you are used to having them there all the time. I am happy to chat with you on this forum.
     
  8. Dutchman

    Dutchman Registered User

    May 26, 2017
    402
    Male
    Devon
    thanks for reply. My decision to put my wife into a home was out of desperation as she was trying to escape all the time. There was no time for reflection or judgement. I bitterly regret it all now. I’m lonely as hell and see no real future if she’s not with me, just empty days.
    My wife has deteriorated and I fear the worse
     
  9. Dutchman

    Dutchman Registered User

    May 26, 2017
    402
    Male
    Devon
    . My biggest surprise was the reality of being on my own. When my wife was at home and wanted her behaviour to stop I wanted her out of the way. I looked after her, she wouldn’t wash, change her clothes and in the end wouldn’t eat. The last week she just wanted to escape the house to go Home. I considered live in care but it wouldn’t work. The home is ok but it is an old people’s home after all and I’m always sad that she’s ended up there. I feel so sorry for her.
    She’s clean, well fed, and sleeps well but is mostly anxious all the time. I just couldn’t have imagined what it would be like on my own. I’ve no real interest in anything. People say it’s early days but each day is a struggle
     
  10. Dutchman

    Dutchman Registered User

    May 26, 2017
    402
    Male
    Devon
    #330 Dutchman, Oct 11, 2019
    Last edited: Oct 11, 2019
    It was arranged today that I meet up with someone going through the same struggle as me. Met in Morrisons cafe and was introduced to this man who’s wife is now in a care home. Big difference is that his wife was in and out of hospital a lot and he’s got used being on his own over a lot longer time.

    No ones story is ever the same and his was different enough not to be like mine at all. He was so much more organised and more confident of his situation, didn’t seem upset about his situation, no awful mornings or lonely feelings. So that didn’t do me any favours. Am I alone with all this?

    And he kept saying that you’ve got to make a life for yourself now as your wife has got a different life now. That’s impossible at the moment as I’m still feel bonded to her as a couple. You can’t get rid of the 29 years of togetherness in 7 weeks. Although she’s got advanced dementia she still looks normal apart from the vacancy in her eyes.
     
  11. Dutchman

    Dutchman Registered User

    May 26, 2017
    402
    Male
    Devon
    Everyone I meet that has involvement in caring whether at home or their OH are now in a home seems to have quite a wide circle of friends to lean on. I’m isolated here and my children appear to have decided that I’m alright now so no catch up phone calls to see how dad is.

    I know I need to get out and make friends but I’ve lost the knack of this over the past couple of years as my wife and I lived a secluded dementia existence. Some of the only people that have shown me any consideration is our united free church who want me to go back on Sunday. I’m not a Christian but kindness and compassion seem to be abundant there. Anyway a good sing song doesn’t harm anyone and there’s tea and cake.

    I know I sound like a broken record but I still haven’t fully come to terms with placing her in the home. She’s well looked after there and I suppose I’ll never know if I could of kept her at home longer. Some people are so sure they’ve done the right thing but my doubts plague me all the time.
     
  12. Dutchman

    Dutchman Registered User

    May 26, 2017
    402
    Male
    Devon
    I went to the home today because I miss her very much. She wanders all the time and as soon as I have her sitting down she gets up and wanders again. She still says I want to ‘go home’ and goes to the front door and looks out the window. It’s heart breaking for me, if only I was sure she didn’t mean our house and hope she doesn’t hold memories of it.

    She doesn’t appreciate that I’m very unhappy as she can’t now recognise my feelings, only her own and her feelings are all mixed up. She’s been there 7 weeks now, 49 days of torment for me.

    So I’ve nearly got through Saturday.
     
  13. Dutchman

    Dutchman Registered User

    May 26, 2017
    402
    Male
    Devon
    While I was at the home today I helped the one of the staff to change my wife’s underwear and into a fresh dry pair. I know that my wife probably doesn’t appreciate what’s going on and she was compliant enough to let us do it.
    I never feel it’s a chore to do this, rather a chance to do something good and worthwhile for her. And it gives me a little time when I’m not feeling stressed, just an act of kindness.
     
  14. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    867
    It will get easier.Try to hold on to that
     
  15. Dutchman

    Dutchman Registered User

    May 26, 2017
    402
    Male
    Devon
    You’ve all stopped posting me!!! Am I being a pest with my moaning?

    I’m I being overly worried or is this a natural course of events?... ..since my wife has been at the home she’s deteriorated and I wonder if I did the right thing placing her there. There’s no way of knowing, of course, how her condition will progress but I can’t help but wonder if the care home environment isn’t always the best place for at least keeping my wife stable. She’s more vacant, is dribbling and just wanders all the time.

    Not much of a life is it.
     
  16. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,302
    Merseyside
    The forum has been quiet today @Dutchman. You are certainly not being a pest!
     
  17. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    @Dutchman a good few members ask the same questions wnen there's been a move to a care home ... personally I think it's the opposite way round ... the move was necessary because the person was growing worse and the level of care needed simply was too much to provide at home ... seeing the person in a different environment highlights this, as it can no longer be covered over by routine, familiarity and that 'it will all seem better in the morning' fooling ourselves that we do ... then not seeing the person every hour of every day means you notice the changes because of the gaps, the gradual creeping up that we overlooked before becomes clear ... and, sadly, downturns are more pronounced accompanied by the feeling that we can do nothing to control the situation, which, whilst daily caring, we could believe we did have some control over ... even more sadly, stable becomes a hope rather than how things can be, or at least the periods of stability become shorter
    it's so hard to accept this ... until we do, though, the resistance simply creates turmoil ... there is some peace in acceptance and living just with how things are today ... there's also sadness and grief, though without the element of tormenting ourselves for what we unreasonably think we might have done or should do now, because the acceptance means we also accept that we have done and continue to do all we are able to; no-one, not even ourselves, has the right to ask more of each of us

    very best wishes to the both of you
     
  18. Woohoo

    Woohoo Registered User

    Apr 30, 2019
    350
    Female
    South East
    Hi @Dutchman , i have been watching your thread but haven’t commented as I have not been through this ... Yet so I don’t feel confident enough to reply . I would say though that from reading before your lovely wife went in to the home , you did your very best for her and you still are , you made a very difficult but necessary decision which I believe was the right one for her . I can only try to understand just how bad you feel. I wholeheartedly agree with others that the only way through this awful time is to push yourself a little and re engage with life and your family . They need you and you them, please don’t isolate yourself . Your wife would be so sad to know how deeply upset you are when all you have done is your best for her . Take care of yourself . Best wishes .
     
  19. Dutchman

    Dutchman Registered User

    May 26, 2017
    402
    Male
    Devon
    I’m having a terrible time this morning as I can’t get out bed and have sobbed all morning at the emptiness of my life and just want my Bridget back. Hopeless I know and but I just think of how unfair all this is when we could have had such wonderful plans.
    I was with couple’s yesterday and that made it worse thinking one day this could be you. How lucky they are to have each other. Why me. What have I done to deserve this. I don’t really think I’ve moved since my wife went. If it wasn’t for my family being upset I probably wouldn’t go on as I don’t see much point. My life has shrunk to almost nothing since dementia entered our lives.
     
  20. Woohoo

    Woohoo Registered User

    Apr 30, 2019
    350
    Female
    South East
    @Dutchman , you really need some help to get you through this . Have you told the gp exactly how you feel ? Feel you need more than just tablets, are you still seeing the counsellor? There are different types of therapy, you could try a different type. I won’t tell you that things will be okay, I will just say that it’s worth the struggle, there will be a time when you’ve moved past this and things will be brighter. Please take care of yourself .
     

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