There is no light at the end of the tunnel...........

Discussion in 'I have a partner with dementia' started by keegan2, Nov 13, 2015.

  1. keegan2

    keegan2 Registered User

    Jan 11, 2015
    190
    Just thinking today what can I do to make things better. My answer is nothing really, whatever I do hits negativity by O/H no matter how much I try to keep up beat about everything, smile when I don't want, hug and comfort him to make him feel wanted, the end result is the same. Its all my fault nothing is going change his mind about that maybe for an hour maybe if I'm lucky an evening otherwise nothing. What is the answer? If anyone knows please share, tired of it all and we are not even at the BAD stage other half can still feed himself, go toilet, shower, change clothes. Heaven knows how I am going to feel when he cannot do any of the above..........
     
  2. chris53

    chris53 Registered User

    Nov 9, 2009
    2,929
    London
    Hi Keegan, the tunnel is very long and sometimes we just cannot see a light at the end of it:it could be that it's now time for you to have a few days break,just to clear your mind and be yourself...any chance you could get some respite for your OH or maybe someone could help look after him?its important to look after you,as this unpredicatable illness keeps throwing out new challenges..just when we think we have the answers!
    Take care and sending a hug
    Chris
     
  3. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    3,072
    Devon
    So sorry you are having such a hard time keegan. Chris is right, you do need to be able to get away and have some normal life for yourself if you can possibly manage it. Also, do you think your OH may be depressed? It might be worth talking to your doctor, a course of antidepressants might help to lift his mood and make life better for both of you. Sending you a big hug.
    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
     
  4. 1mindy

    1mindy Registered User

    Jul 21, 2015
    539
    Female
    Shropshire
    Had a really nice day together today with OH.We Went for lunch then to Chester for a mooch. Home had nice evening together. OH took the dog for a walk up our long drive. I sat and waited for him to come back,seemed to have gone for a long time. Turned off the TV went into the kitchen, realised he must have gone to bed. Went upstairs said in a cheery voice I was sitting waiting for you didn't realise you had come to bed .Reply....tough you show me up in front of people ,you know what you do ,you think you are so clever well you will never do that to me again. I said nothing went to the bathroom got into bed he said if you are coming here I am going . Up he got presumably to go to another bedroom.Where did that come from. We haven't seen or spoken to anyone when we have been together in the last week,and certainly not today.
    Sounds like you and I are at the same stage.I smile ,sound lyrical in my voice ,hold hands . He is so negative about everything. I do go out a lot on my own,with friends or with my daughter just to get away.
    So if an answer to it comes here ,I too would be truly grateful.
     
  5. theoh

    theoh Registered User

    Nov 11, 2015
    24
    I can so sympathize with you all on this. My OH was very senior and successful in his career (he was my boss for 30 years) and finds it so hard and as result can come out with such hurtful wounding things on occasions. I remember a truly awful row by phone some 6 months ago I had was late leaving my office and I said I was not coming home I had to take an hour out to calm down. He then lost it and was trying to drive the car to find me (despite us hiding the car keys). Driving in this part of the world is like the Ben Hur Chariot race!

    So I had gave up having a strop and came home and tried to talk to him about it and how hurtful he could be. He said he was going to leave me etc eventually he was contrite while he remembered.

    I now try and deal with these situations with its not him, he would never say such things its this bloody awful thing that has taken over his mind being mean and nasty not him. Easier than done on occasions I know but I keep telling myself this but the negatively gets to us all.
     
  6. keegan2

    keegan2 Registered User

    Jan 11, 2015
    190
    Thanks for your comments terrible thing to say but it seems I am not alone there are so many people out there dealing with the same problem. I suppose we are all in the same tunnel just sometimes there are cracks in it that gives us some respite.........Also he has started a course of antidepressants which are making him a little more spaced out and even quieter so I am treading gently........
     
  7. keegan2

    keegan2 Registered User

    Jan 11, 2015
    190
    Normal life is now work and straight home to a very sad looking O/H. Then waiting for our wonderful little boy of 7 to come home from school without whom life would be totally empty.
     
  8. angiebails

    angiebails Registered User

    Oct 8, 2009
    227
    crewe
    All this so mirrors my life. I decided the other day I am fed up of being upbeat, I realised that I had picked myself up more times than a skittle at a bowling alley and with no help,no response from OH and not at any time has he shown affection or started a conversation. I sit in my bubble trying to keep happy. So I have spent the last week existing just looking after him without trying to boost the situations or finding things to do to cheer him up, just living. But after all which ever way we play it the disease has us and it kills us too.


    Sent from my iPad using Talking Point
     
  9. marionq

    marionq Registered User

    Apr 24, 2013
    5,902
    Female
    Scotland
    These feelings tragically mirror much of my own over the last year. My consolations are that we did have a very good life together and when his behaviour began to change and before I had even thought of AD I began to go on holiday with my daughter or friends so ha lovely memories rather than bitterness. Finally after a bad year things have improved.

    What came close to a breakdown led to SS getting me initially a few hours volunteer cover and then eventually one day at a centre and now three days a week. This together with an increase in medication which has calmed down his need to constantly wander has made a significant difference. I would gladly have run away or seen him taken away at one stage but now I can deal with the nonsense as the rest is manageable.

    I feel for you all and the others who are not on here. This is a cruel illness which makes our loved ones unloveable and ourselves into frazzled remnants of our former selves.
     
  10. keegan2

    keegan2 Registered User

    Jan 11, 2015
    190
    When he was wandering what did you. Did you just let him wander? Did you call police everytime? Just want to know what to do for best whilst we discover which meds will clam situation........
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,894
    Kent
    Hello Keegan

    I think the hardest stages are the early/middle stages when there is insight. It`s when the person with dementia often has the lowest esteem, feels everyone can do everything except them, feels inadequate, paranoid and possibly frightened.

    My husband sounded similar to yours and took out all his frustrations on me. I think I spent more time in despair and tears than I have ever in my life.
     
  12. marionq

    marionq Registered User

    Apr 24, 2013
    5,902
    Female
    Scotland
    Keegan we had a huge range of outcomes. In the early days strangers brought him back or phoned me from his mobile phone. I would go hunting for him and often tracked him down. When he began getting on buses the problem stepped up a notch and we had police searches. By now he sometimes didn't answer his mobile phone or if he did gave me a nonsensical location. I then bought GPS tracker for £200 which works by sending coordinates back to your mobile phone. The last time he went missing was at the start of September and the tracker was brilliant as once again he had got on a bus and believed he was in an entirely different place to where he actually was.

    To be honest the biggest change has come from an increase in medication (Trazadone) which seems to suit him and has calmed him down so that although he would still be going out at the drop of a hat he has lost the urge to just take off. I should add that I take him out every single day so he is not restricted just programmed that way.
     
  13. keegan2

    keegan2 Registered User

    Jan 11, 2015
    190
    Just a question, do you think it better to let him go off for abit then go find him or just try and keep him in the house. Obviously at the moment O/H is trying to escape us as he is having a bad time but once meds have kicked in should I let wander off for a bit. GPS has now been arranged so we can track him, we don't want to keep him a prisoner at the same time it is stressful when he is gone.......
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,894
    Kent
    I used to let my husband go.

    There was no way I could restrain him, he was much stronger than I am, especially in that frame of mind when he became manic.

    If I had locked him in he would have become frantic.

    I was able to let him go and follow him at a distance and at the same time phone our son for help.
     
  15. marionq

    marionq Registered User

    Apr 24, 2013
    5,902
    Female
    Scotland
    In the early months I could not stop him from going out. I would have had to knock him out! This will inevitably escalate and you are powerless to prevent it. After numerous police reports SS agreed to fund a place in a care home for John as things were so out of control - however the meds began to kick in and gradually his desire to wander reduced.

    I now feel he is manageable but know only too well that without the Trazadone he would be off again.
     

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