Inside the mind of dementia

Discussion in 'I have a partner with dementia' started by Dutchman, Apr 28, 2019.

  1. kindred

    kindred Registered User

    Apr 8, 2018
    2,126
     
  2. Dutchman

    Dutchman Registered User

    May 26, 2017
    190
    Thanks Kindred. The Mental Health team are making a visit tomorrow but I’m very apprehensive as she doesn’t know and I’ll have to spring it on her otherwise she’ll walk out the house. Quite what they’re going to recommend I just don’t know. Probably tell me off for not being more proactive in my attempts to get things in place but I’m mentally tired and usually just want an easy life, half normal so I don’t do much ringing around. Not that my wife would accept strangers. It’s virtually impossible to get basic body washing done when my daughter arrives. Also meeting up with the dementia team later tomorrow. More recommendations. I suppose in the end I’ll get there. As a matter of interest is it alright to ask how much you pay for the home. I’m told so many different prices. I’ll understand if that’s private. Best wishes
     
  3. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,878
    Suffolk
    Oh course it’s alright, in fact you must.

    I found out the way to get action by accident. I was talking to a member of our local family careers and she asked me how I was. I just lost it! Went through the whole gamut of reactions! Within days, OH had a consultant appointment within 10 days ( Easter was in the way),, and I was told to get respite ( self funding).
    The Easter was a nightmare, two falls, two tias. But a member of the DIST ( dementia Intensive Support Team) came to see me.
    While she was here, OH butted in ( he hated me talking to anybody else if he wasn’t within earshot), he wanted to go to the loo. The DIST lady must have seen my shoulders slump, so she jumped up and said, I’ll take him - and did, leaving me sitting in the sunshine! Bliss!
    The consultant stopped most of his tablets. OH went in for respite and didn’t come out.

    So my breakdown certainly got results, though I didn’t ‘get it’ til later!

    So try a bit of honest talk, threaten leaving her at their door, or something equally horrendous! Carer breakdown is not the best thing for you to undergo, promise.
    ,
     
  4. dancer12

    dancer12 Registered User

    Jan 9, 2017
    432
    Mississauga
    Hi All:

    Can't live with them and can't live without them. My husband and I fight all day long, if we are in the same room, so I long for him to go to bed so I can get some peace. But when he is in bed and I'm all alone I long for the tender moments we used to have. I find the easiest way to get away from loneliness is to socialize with friends however when they need 24/7 care it's not easy to find spare moments to socialize and when you find some spare time for friends you are just to tired and want sleep. I keep asking myself who the real victim of this disease is - the person who lacks feelings & empathy or the person who is empty, alone and lonely and only desires a bit of affection. I wonder & I cry.
     
  5. Dutchman

    Dutchman Registered User

    May 26, 2017
    190
    When we had our OH as normal, when they operated as a normal human being and we expected a hug here, a caress there, then we felt special and loved. Now my wife, who has rejected me as her husband, treats me as a substitute and more or less puts up with me. I’m hardening myself to it because I need to otherwise I’ll just tip over the edge. I sometimes, well quite a bit actually, imagine what it would be like on my own. Of course I would miss her but wouldn’t life be so much easier. I couldn’t go through this with someone else, I just couldn’t take chance so on my own I would need to stay. I know what you mean about affection though. To know someone loves you is worth everything.
     
  6. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,254
    Female
    South of the Border
    I so feel for you, as I am in the same situation.
    I think the hardest part, that no one can resolve, is that you and I are still thinking with our 'normal, life long heads' and we want our loved ones to do the same. As they cannot, and will not, it feels like such a huge rejection of the love you have once known and shown each other.
    I feel that I live a lie - he thinks I am OK with our situation, he doesn't even think there is a situation - but I am terribly unhappy - just like you are.
    We are told not to live in the past - but we have to, as there is no present - there is no future. There is nothing worse than feeling lonely and unloved, when you live with someone who should be your partner - but has left in the arms of this disease............
     
  7. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,773
    N Ireland
    #27 karaokePete, May 13, 2019
    Last edited: May 14, 2019
    I have read the last few posts here and can only say that I empathise with that feeling of being tired and lonely in the company of one's partner.

    It's can be crushing and strikes when we too are of an age when we are getting old and in need of mutual support from our partner. I've always thought that this is one of the cruel aspects of dementia.

    It certainly amounts to a tougher life than the happy retirement I had planned with my wife.
     
  8. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,254
    Female
    South of the Border
    Inside the mind of dementia...........

    My OH cannot remember his pin number. I never knew his pin number.

    So, each week, I transfer his pocket money from his account to my account, and he goes to the Post Office to draw his pocket money in cash. This works well as he can remember my pin number - and so can I !

    I had bought a couple of small items on ebay for him - came to about £12 - I said not to worry about paying me.

    Yesterday, he presented me with £10 and told me I had to accept it.

    This morning, I checked my bank account, as I always do - and, yes, you've guessed it - he had drawn an extra £10 over and above his pocket money to give to me. So, it turns out, I had bought him the items from ebay and then used my own money to pay myself back.....mmmmm - I sort of get it !!
     
  9. Dutchman

    Dutchman Registered User

    May 26, 2017
    190
    The mind of dementia. Here’s some examples.....today we go out for breakfast as usual and when we get to the supermarket she says ‘ I’m not getting out the car’ . We go home and head for another supermarket and she wants another sandwich although she has 3 already in the fridge. I cannot convince her out of buying it. I’m feeling today that my life has been stolen from me and not at all upset if my wife wasn’t here anymore. Had enough really. Is the feeling that you’d like your OH to disappear for good a cruel thing to want. It’s just too much sometimes and I want my independence back, not much, just more than nothing.
     
  10. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,455
    Yes @Dutchman Dad has been complaining about his hair for weeks, he needs it cut. A week or so ago I suggested that I take him to the barbers but was told 'not today' Since then he has complained every day about his hair and even threatened to walk to the barbers. He would not make it to the end of the road and if he did he would forget where he is going.

    Yesterday on the way back from another appointment I stopped at the barbers and was told 'I don't need a haircut' Well he had one and it looks better.

    The young girl who was about to cut dad's hair seemed a bit baffled by my frantic signalling that dad has a comb over but the barber who knows dad helped her out and dad never even noticed.

    It.s funny that he forgets everything but never forgets to comb that bit of hair over his bald spot. He would have been mortified if she had cut it short because 'he still has a full head of hair and all his own teeth' I don't know where the teeth are now but I haven't seen them for a while.

    Yes I want my life back as soon as possible. Tomorrow morning would be good but what do we do.
     
  11. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,254
    Female
    South of the Border
    Oh ,dear, Dutchman - I feel for you - I really do. You have my thoughts in your head, you really have - it's weird isn't it, how small things just make everything so near the edge? I have social worker coming to morrow re care plan for OH. I am doubtful if I can even be civil to her let alone coherent.

    Oh well, time to make the 5 egg cheesy omelette, again, again, again, again xxx
     
  12. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,773
    N Ireland
    Have you ever thought that he may hate cheesy omelettes but just keeps asking for them because he can't think of anything else and just wants to appear to be as sharp as a razor!!;):)
     
  13. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,254
    Female
    South of the Border
    Oh, no! He keeps telling me how much he loves them, and on the occasions the carers have had to make them, he complains long and loud that they are not like I make them !!! He eats so many eggs I am thinking a few chickens in the back garden would not go amiss!!!

    upload_2019-5-14_15-45-46.png
     
  14. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,773
    N Ireland
    A double advantage there @maryjoan - something to talk to, and if you talk nicely you may get more eggs :D
     
  15. dancer12

    dancer12 Registered User

    Jan 9, 2017
    432
    Mississauga
    Hi:

    Sad to say but I think we all need our quiet time. My husband wandered out of a hospital one evening, I had taken him for some tests because he kept complaining about his back. They couldn't find him anywhere so they called in the police who after 5-6 hours tracked him down. I was upset he was lost but in the back of my mind I kept thinking I hope they don't find him for a few days. I felt so guilty for having those thoughts. The police brought him back to hospital and he was having a jolly old time, he laughed all the way back home. Boy did I feel angry that I was so worried. But I'm sure the next time I'll be just as worried.
     
  16. Dutchman

    Dutchman Registered User

    May 26, 2017
    190
    Hi Maryjoan. It’s all very strange here at present. After a few weeks since Easter and my wife not recognising me as her husband she seems to have transferred some of her nice emotions to me as second best. A hug here, little kiss there and believe me I’m thankful that a least I’m receiving something. I don’t understand why she’s acting this way and has not been more fretful over the loss of husband. Perhaps she’s loosing the memory of him. I always have to catch myself when speaking and not say we, rather saying you and I, to keep things separate. Anyway, I’ve gone past the point of getting very upset about it. I suppose this is what happens as we loose them and they drift away and we are (whether we like it or not) being prepared for the eventual stage when they won’t be around ( unless I pop my clogs first, but then whose going to look after her then) . I just wonder what the next stage in this VD will be. It’s now two years since the diagnosis and decline has been pretty rapid.
     
  17. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    309
    Sheffield
    I can empathise with all the above posts. I too wish OH would disappear especially this week as he has been so argumentative. I thought we had passed that stage but it seems to be back. He was diagnosed 3 years ago and was given mementine which helped calm him down and be more reasonable. But sadly he is back at that stage again and with a much worsened memory. He is always bored but doesn’t want to socialise with anyone and doesn’t like me socialising either. He is rude about everyone he sees. I don’t know how I keep my patience I think I am just too worn Down with it all. Living alone looks very good indeed. Couldn’t risk having another relationship as it could happen again.
     
  18. canary

    canary Registered User

    Feb 25, 2014
    9,643
    Female
    South coast
    People with dementia often retain an emotional memory of things, even when they cant remember the actual event. I wonder if a similar thing is going on here? She cant remember who you are, but she remembers the emotional connection at times.
     
  19. EdgsonW

    EdgsonW Registered User

    Jan 14, 2018
    79
    Male
    Bath
    What makes her forget me sometimes?
    Should I have my hair cut or shave daily?
    Should I always wear my glasses, I want new clothes but should make sure that they are very like the ones I usually wear.
    A relative said I had BO and should wash more often.'Bin up since 4.30am.
    So tired but can't make any of this rhyme this time.
    take care and deep breaths Regards Edgson
     
  20. Dutchman

    Dutchman Registered User

    May 26, 2017
    190
    Hi Canary and fellow carers. Today I really feel as though I can’t take it anymore. She doesn’t recognise me as her husband with the effect of everything I do or touch or say doesn’t belong to me but him and I feel like a stranger in my own home. Again today she wants to go to the local hospital to look for her husband. Why there is anybody’s guess. I say no as we’ve been there twice before and aimlessly wandering round corridors asking nurses and staff for someone she doesn’t even know the name of is pointless and extremely frustrating to put it mildly.

    I keep saying no and she gets angry and keeps on and on and then says she wants me out of this house and to find someone else. If only, in a heartbeat. I can’t stand it anymore and we go. Of course it’s all pointless. We come home and I’m so fed up with this that I truly wish she’d pass away in her sleep tonight and I could get my life back. She’s now taken the dirty clothes out of the machine saying they’re clean and is folding them up.

    What do we do when enough is enough. Call the doctor, what’s the procedure. Advice anyone please
     

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