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
    275
    hi everyone

    I’m so wrapped up in the present and have few detail records of what life was like on The forum when I started back in 2017
    I need to see all my posts and replies since when I started.. this would be great help to me.
    Has anyone a way of doing this?
     
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,443
    Female
    Dundee
    Hi @Dutchman.

    If you click on your user name, Dutchman, on the left you'll get a pop up menu. Click on the line 'profile page'. This will take you to your own profile. Once you're there click on the tab 'interact'. You'll get a choice of 'find all content by Dutchman' or 'find all threads by Dutchman'. I hope that makes sense!
     
  3. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,825
    Male
    Bristol
    Good Morning Dutchman
    If you click on the icon to the left of the envelope for massages it will give you your profile. From there click on "Your Content" and it will all be listed. Izzy just beat me to it with another way of doing it.
     
  4. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,443
    Female
    Dundee
  5. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    757
    Male
    Newcastle
    This is one of the most valuable assets on Dementia Talking Point. It is easy to think that an issue is 'recent'. Being able to track one's own posts through the 'Your content' function enables a more accurate view to be formed of just how long things have been going on.
     
  6. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,338
    East of England
    It’s grim isn’t it Dutchman? I look back sometimes to see how things were such a short time ago for me and find that they were bad in quite a different way from today. I am finding that as he gets worse I have a bit more mental freedom but more mental stress dealing with his symptoms, a paradox really, which goes to show how caring for someone with this disease messes with your head.
     
  7. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,490
    @Dutchman I started on here sometime in 2017 and I remember having to confiscate dad's step ladder because he wanted to clean the conservatory roof and worrying about his driving which I managed to stop. Seems such a short time and here we are with dad asleep 20 hours a day. I agree with @Grahamstown about the more mental stress.

    Two years is such a short time to get this bad but it has felt like a lot longer than that to me. I cannot do another two years.
     
  8. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    410
    Female
    Basingstoke, Hampshire
    Well thank you for that. I didn't know you could do that. I've just looked back at my posts and I'm surprised at the change in my husband from when I first started posting. It all seems to have happened so quickly.
     
  9. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,443
    Female
    Dundee
    I’m glad you found it useful.
     
  10. Dutchman

    Dutchman Registered User

    May 26, 2017
    275
    I’ve been trying to explain just that and you’ve done it for me. I’ve had a mixed messed up memory of the last two years and when I’ve read through all my posts and replies I realise just what a struggle it’s all been. The shouting, threats, bullying, arguments, trying to reason and be reasonable, the tiredness and stress of it all. It all there in the history and it’s given me some clarity.

    That’s not to say that I don’t still miss her. The house is deadly quiet and I miss terribly her actual physical presence, smells and all. I’m lonely and in shock and still cannot come to terms with how my future is going to be without her.

    There are some, including one member of my family, that would like me to snap out of it, stop the wallowing, be brave, accept the situation, etc. All I can say is until you’ve lost the love of your life you’ll never know how you will react.
     
  11. canary

    canary Registered User

    Feb 25, 2014
    10,284
    Female
    South coast
    Im glad you have found some clarity @Dutchman.

    Of course you miss her, it will take time adjust.
    All I can say is that this is most spectacularly inappropriate advice
     
  12. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    757
    Male
    Newcastle
    Take it in your own time @Dutchman. You'll never be able to 'snap out' of loving your wife and making sure that she gets the care that she needs. Like me, you still have caring responsibilities and a role to play, just different from before. Nearly 4 months on, I've been helped by my cycling activities but not in the evenings, when it is the affection of my dog that gives me solace. Caring remotely after doing it so intensely is not an easy adjustment. You'll always find support here.
     
  13. Dutchman

    Dutchman Registered User

    May 26, 2017
    275
    Today I saw my wife for the first time at the home. I was dreading it and didn’t know what to expect and when I saw her she was so pleased to see me and we hugged and kissed, but what a change in her looks. She had the first real meal today after at least a week and has lost weight and she is really dopped up with medication to keep her calm. But she can’t explain anything and her sparkle Is vacant. I can still make out that she wants to go home but what home? It would be so easy to bring her back home here but I can’t look after her the way the home does. It would be so easy to pretend it could all go back to how it was but how long before it all kicked off again? And then it would be so difficult to find another home as good as she’s in.

    I’m going again tomorrow to see her and if all turns out ok I’ll go everyday if necessary.
     
  14. Dutchman

    Dutchman Registered User

    May 26, 2017
    275
    Has anyone been in the position I’m in where they’re tempted to bring their OH out of the home and tried to home care them. Can it be done? Is it practical or even financially possible? God I’m so mixed up with my feelings about this. No one should have to be put in the emotional positions we find ourselves in. An Alzheimer nurse has just phoned and tried to reassure me that Bridget’s condition will probably improve. Still leaves her in the home though doesn’t it! What am I supposed to do now, on my own, with this family home and it’s possessions?
     
  15. canary

    canary Registered User

    Feb 25, 2014
    10,284
    Female
    South coast
    Please dont even consider bringing her home @Dutchman
    Go back and re-read your posts about what she was like when she was home. Even then she was asking - no actually demanding - that she go home, so its not home with you that she wants to go to. She wants to go home to her parents.
     
  16. Dutchman

    Dutchman Registered User

    May 26, 2017
    275
    I was so looking forward to seeing my wife at the home and now it’s done I’m consumed by fresh emotions. To actually be there today, to be where potentially this could be the rest of her life fills me with dread. I know they take great care of her but our home is here filled with all the memories and she’s now stuck in one room. Me here, my wife there. So again my imaginings of feeling better when I saw my wife again turn out to be so wrong in reality. I am so tired by all this.
     
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,395
    Kent
    Your wife doesn`t need to be stuck in one room @Dutchman.

    When my husband went into residential care I asked the staff to make sure his room was for sleeping only. The rest of the time I wanted him to sit in the communal sitting room and eat in the dining room. Even if he was unable to socialise with other residents he was among the comings and goings of staff, visitors and others and so was never isolated.
     
  18. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    757
    Male
    Newcastle
    #18 northumbrian_k, Sep 2, 2019
    Last edited: Sep 2, 2019
    I agree with @Grannie G . One of the main advantages for my wife of being in care is that she is able to once again become the sociable lady she once was - or if not quite that, at least has the chance to socialise - in a way that she couldn't here because I was too busy being her carer. She spends most of her days with the other residents and joins in with activities that she never had the chance to do at home. The activities coordinator sometimes takes her out for a walk to the local cafe and there are always plenty of staff around. It is not always easy for her (or them), and there are plenty of ups and downs, but no days so far when she has done nothing but sit in her room.

    It is hard at first, but you need to try to tough this out @Dutchman. I knew as soon as I had dropped my wife at her new home (for that is what it is) that she was never coming back. The 'home' that she still talks about going back to is an amalgam of happy memories from her childhood. It doesn't exist and never did. So I reconcile myself to the fact that, although living apart, we remain a couple with shared experiences and memories, even if sometimes they aren't reliable.

    There is no need to visit every day unless you are absolutely convinced that this is what you want to do. I tried to at first but found this too much in many ways. I am now happier visiting on 4 days a week, either in the morning or afternoon. This seems to be less unsettling for us both.
     
  19. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    233
    Central Scotland
    Most times when I visit I take in more of my OH's 'things' e.g. his Queen's Scout Certificate and photo of him receiving it from the Chief Scout (which sparked a conversation with the visiting Podiatrist who was also a QS. I have started a photo album for him and take in around a dozen photos at a time, which we look at and then put in the album, adding the names date and place. The activities coordinator, whose father was a dance band drummer, persuaded me to take in OH's drumsticks and snare drum. He ignored it for about a week but has now started drumming along when there are entertainers in or CDs played. He also has his own, brought from home, riser chair in the lounge and various treasured possessions in his room. This week I have been swapping some of his summer weight clothes for warmer ones.

    Usually, if the weather allows, we go for a walk round the gardens, hand in hand. If it is wet we either join in any activities or sit together in the wee conservatory. I take him wee treats such as chocolate or plums from our garden, which he thinks are contraband and scoffs when no one is looking. OH seems to think I also live in the Care Home, but in a different unit. He wishes that we shared a room, but has worked out that we cannot as all the rooms only have single beds. Yesterday, he was cheery and full of fun, today he was miserable and kept nodding off, so I didn't stay long. It is by no means perfect but 100 x better than when he was at home and I was sleep deprived and getting more and more frustrated by his incontinence, same questions, over and over and following me about like my shadow.

    Treasure that recognition, hug and kiss when you visited, I hope there are many more hugs and kisses to come.
     
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,395
    Kent
    I love the visual image of your husband scoffing his treats while no one is looking @Wifenotcarer.

    I always left my coat in my husband`s room and I think he also thought I was always there. When I was ready to leave it was to bring the washing in or to tidy the bedroom or even to go to the shops to get something nice for tea.

    I also took part in activities and I`m sure he thought they were for me as much as him.

    It`s a pleasure to read your post @Wifenotcarer. When I think back to how it was and how it is now, you have certainly been able to make the best of a tough time.
     

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