Dementia’s journey

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

  1. White Rose

    White Rose Registered User

    Nov 4, 2018
    81
    #81 White Rose, Sep 14, 2019
    Last edited: Sep 14, 2019
    I really feel your pain, there can be nothing so cruel as dementia, we are all grieving for the relationship we've lost and the person we love who is still alive in body but mentally has 'gone'. My partner hasn't got to the stage your wife is at (and I am completely terrified of how this horrible disease is going to progress), so I've no idea of how I'm going to cope eventually being on my own but my feeling is that somehow we have to give ourselves a lot of love, treats, care and attention, do things we've always wanted to do but were unable to do while being a carer. I hope you have a sympathetic GP who can help with the anxiety, etc. And don't blame yourself and feel you're abandoning your wife, it sounds like you've done everything you could for her but it's now time she had professional help.
     
  2. Dutchman

    Dutchman Registered User

    May 26, 2017
    403
    Male
    Devon
    I drove back from my daughters this morning straight to the care home and my wife looked very vacant. Pills, dementia or the combination of both? She now shuffling her feet. I believe the home environment is not helping to keep her mobile ,but then again , when she was here in her house all she did was sit on the sofa all day anyway.

    I do miss the role of caring for her funnily enough. I’m not used to just having myself to consider. Almost indulgent. I miss her company you see, even when times were bad there was a physical presence in the house. Things belonged to her but now they’re not going to be touched by her again. And it’s so quiet. An Admiral nurse said I’d come up to the wall that you hit when you’re grieving. Stop trying to get through it. Stay with the grief.
     
  3. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    233
    Would you consider a dog? Your wife may also enjoy canine visits!
     
  4. canary

    canary Registered User

    Feb 25, 2014
    10,698
    Female
    South coast
    I think that Admiral Nurse sounds very sensible
     
  5. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,585
    I agree you need to allow yourself to grieve, but also recognise that your daughter is grieving also at the loss of her mum through dementia.

    Hope you found some joy in your time with your daughter. Please remember that your wife will still get tired just as she did at home. We all have good & bad days.
    X
     
  6. Dutchman

    Dutchman Registered User

    May 26, 2017
    403
    Male
    Devon
    I’m
    I’m mostly like you despa
    How many tears do we have to cry before it gets any better. I’ve just looked at some film I took of my wife in the home yesterday and that’s set me off again. It all seems so hopeless and I imagine I’m becoming a bit of a bore with all this struggle to stop myself being an emotional wreck.

    Indoors, on your own, you only have an empty shell to shout to and there’s no one, except my fellow forum posters, who can give comfort. Oh for an hour of peace from all this, to just feel calmer.
     
  7. Dutchman

    Dutchman Registered User

    May 26, 2017
    403
    Male
    Devon
    I’m sorry DesparateofDevon if I’m out of order here on the forum and if by mistake I offend you or anyone else. You all give such good advice and I’m too weak emotionally at the moment to try anything.

    Here’s the thing, the centre of my concern. I miss my wife even after a long time of caring and coping with her behaviour caused by the dementia. I discovered now that I’m weak and crave her company for its own sake. I’m lonely and I’m very frightened that I will not be able have another life, after all she’s left me now inside dementia and once gone, that’s it. She’s the only person I’ve ever loved. I don’t have the time left to mourn her over time and start over again. It would seem like a betrayal to her memory anyway. When we’ve loved someone that much they are really the only one.

    So there you have it. Am I selfish, probably.
     
  8. White Rose

    White Rose Registered User

    Nov 4, 2018
    81
    Hello Dutchman - I'm obviously no expert but you are certainly grieving. When my dad died I was so upset, took me months to get over it - but you know, you do get over it, of course I still miss my dad but life can go on. You also miss the role you had of carer, there's a space in your life which was filled by the immense job of being a carer for your wife. But you can still visit her can't you? You can still enjoy her company when you visit. In the meantime, on a practical level, do you like walking or cycling or running? I like to cycle, it takes me away from everything, mentally as well as physically - it's also really therapeutic to get outside. You will get through it, you're just in a bad place right now.
     
  9. Dutchman

    Dutchman Registered User

    May 26, 2017
    403
    Male
    Devon
    Thanks for your kind and quick reply. I’m encouraged by all you kind people who say that I will feel differently and better, just give it time. Perhaps I will dig my old bike out take it for a ride. Get out of breath, get myself tired, worth a try.

    Time has moved slowly before me. It’s only 4 weeks since she moved out now but seems more like 4 months. Nothing else enters my thinking so perhaps I need even more distractions.anything that me chance of a moment of stress freedom.
     
  10. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    hi @Dutchman
    you're mourning for your wife as she was and the life you had together ... chatting here is good, better than bottling it up ... chat with your family too, even shed a few tears with them; it's a sad time
    I found my emotions over dad went in waves, and it was best to acknowledge them and, as he always told me, just keep putting one foot in front of the other to carry on ... sometimes I walked slowly, though gradually I increased my pace
    that was a metaphor, but actually walking does help, and doing some cycling will help, so give it a go ... are there some off road cycle routes near you ...
     
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,585
    #91 DesperateofDevon, Sep 17, 2019
    Last edited: Sep 17, 2019
    @Dutchman grief is soul consuming at times. The love you have for your soulmate will never change, no matter what life throws at you. All on this forum have different personal life experiences, & I shared mine with you so that a different perspective could be seen; from the perspective of a daughter. With both of my parents having dementia, I long for the opportunity to grieve with my Mum/ Dad over the sadness I feel. I would love to have my Dad cuddle me, know who I am, take me for a walk, talk to me..... I have lost my Dad to the world of dementia he lives in. Likewise my Mum.

    I have been angry at the world for years at the unfairness of this cruel disease; then last year my biological Mum died ( I’m adopted but found her after I was hospitalised several times with major health issues over 20 years ago) it was a crippling emotional experience, a journey I felt alone in.

    My own son & daughter repeatedly told me they hated seeing me torn into pieces all the time. They wanted their Mum back, they to were grieving, & wanted me to be the mother, the parent they needed.

    So I apologise if I’ve offended anyone but I spoke from the heart, & my own experience not only as a daughter but also as a mother.

    Life is a precious thing, a beautiful treasure, grief takes all the joy out of this at times.
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,700
    Kent
    I doubt you would have even thought of this four weeks ago @Dutchman. It doesn`t make life good but it does show you might be seeking some distraction to enable you to continue.

    It`s what so many of us have tried to do. It`s part of the necessity of evil.
     
  13. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,153
    Nottinghamshire
    I bought myself a bike @Dutchman when my dad was in the late stages of dementia. It did help riding it and getting out of breath. I slept better at a time when sleep didnt always come easy. A year later I'm still riding ( not so out of breath as I was last year) and it's good to get out in the fresh air. Give it a go.
     
  14. canary

    canary Registered User

    Feb 25, 2014
    10,698
    Female
    South coast
    That sounds like an excellent idea, get out of the house see something different and get out of breath. Autumn is coming with the beautiful colours of the leaves.
     
  15. kindred

    kindred Registered User

    Apr 8, 2018
    2,246
    Bike is a great idea. As you know, Dutchman, I have been through this. At first, whatever you try for a distraction, nothing really works but the important thing is to do it. The distraction will begin to get a bit more of a habit and you build it up from there. I don't think we wake up one day and feel different. Oh I wish, believe me. Yes, get tired. I work and I volunteer and I get myself too tired to think. I know, Keith was the only man I can ever imagine loving and I'm not after another relationship. I get it. Stay with the fact you can see your wife and please don't try to anticipate a terrible future. Whatever happens, whenever it happens, the lovely folk on this forum will see you through, as they have and do me. with love, Kindred.
     
  16. Dutchman

    Dutchman Registered User

    May 26, 2017
    403
    Male
    Devon
    Thank you so much Kindred
    I can’t argue with anything you’ve said as it all means so much sense. Putting it into practice is the difficult part.

    Thank heaven for the forum
     
  17. Dutchman

    Dutchman Registered User

    May 26, 2017
    403
    Male
    Devon
    Just phoned the home and not good news. My wife is not only going into someone else’s room to get into bed, but worse.

    She seems to have attached herself to a man resident who is similar to me, annoying him, pulling and pushing him and then hitting out at the staff when she can’t get her own way (she wants to go home) This cannot go on. The resident will involve his relatives I’m sure and all hell will let loose.
    I’ve informed social services who will call me in the morning and seeing the homes doctor tomorrow afternoon re medication. Either they dose her up to keep her quiet or they’ll transfer her elsewhere. Who knows!

    My daughter says it’s not my problem now. In some respects she’s right but it’s my wife and I’m worried
     
  18. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    hi @Dutchman
    calm yourself ... these things happen in care homes ... they happened in dad's care home ... staff have seen it all before and will work a way to support both your wife and the other resident
    the staff have to keep you informed, and it's important they do

    as to the reaction of the male residents family .... I doubt it will be as you fear ... you wouldn't react that way in their shoes; people are understanding ... they will want to know that the staff are taking sensible action, as you do

    'dose her up', I very much doubt ... that just isn't the way these days ... the GP may well look into trying medication but always to help your wife have a settled day
     
  19. canary

    canary Registered User

    Feb 25, 2014
    10,698
    Female
    South coast
    Mum did all of those things.

    People with dementia are constantly in and out of each others rooms and they have a very fluid notion of ownership - its what happens in dementia homes.
    Mum got attached to a male resident who had the same name as her late husband. The carers used all the tricks in the book to keep them separate until mums delusion passed. She never needed medication, although I would not have worried if she had. They aim to reduce symptoms, but not drug them up.

    It will be fine.
     
  20. Dutchman

    Dutchman Registered User

    May 26, 2017
    403
    Male
    Devon
    Many thanks all for your reassurances. And for replying so very quickly.

    I’m hyper sensitive at the moment having not had much experience of this sort of thing.
     

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