1. canary

    canary Registered User

    Feb 25, 2014
    10,271
    Female
    South coast
    This is the bit I find hardest too.
    OH and I live parallel lives and I live in silence for hours (OH cant cope with the noise of a radio or music playing) as he cannot participate in a conversation anymore and often accuses me of trying to tell him what to think, or else he just ignores me. Its a lonely old life, isnt it? Not surprising that I spend way too much time on here.
     
  2. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,293
    Female
    South of the Border
    Yes indeed. I find if I come across another human being - even the lovely Tesco delivery person, I talk them to death!!!!
    My OH was quite annoyed that I was texting my 3 children the other day, and they were texting me as well. He asked what was going on... he had completely forgotten that my kids were worried about their father ( who has heart problems) was having a hip replacement that day......
     
  3. AliceA

    AliceA Registered User

    May 27, 2016
    2,359
    Dreams are a solace, I find. I had one where my grandmother came to me and opened her arms and I felt such unconditional love. I have had others where my late father in law came and was supportive, strangely this only happened when his sons needed support. He died when I was six months old so we had not met. I felt he had handed the baton on to me! He died when my husband was young. Xxx
     
  4. AliceA

    AliceA Registered User

    May 27, 2016
    2,359
    My regular delivery/workman people are 'friends' a one level. I know their life stories!
     
  5. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    406
    Female
    Basingstoke, Hampshire
    I'm the same and also when I get phone calls. After a while the people on the other end make an apology and explain that they have to go.
     
  6. AliceA

    AliceA Registered User

    May 27, 2016
    2,359
    So easy to do! X
     
  7. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,293
    Female
    South of the Border
    I am currently 'up north' for a couple of days. OH being looked after by his son.
    My brother started to recount how his friend 'had it so much worse' than I did - I stopped him in his tracks and said 'You don't know how bad I have it'. His reply was 'No, I don't' - but he did not ask me to explain...........
     
  8. Dutchman

    Dutchman Registered User

    May 26, 2017
    267
    Hi Kindred

    This morning I asked if her teeth had been cleaned and she says no. That’s two days no cleaning. Couple that with no washing of hair and important other bits and it’s no wonder I feel put off for a cuddle. I’m saddled, yes saddled with a person who is moving away from knowing she should be clean, just because she should, to someone who is becoming too lazy to care. Someone asked me the other day what did I really want to happen and I said you don’t want to know. Because the answer deep inside is too awful sometimes and I’m ashamed to even feel it, or voice it on the forum of all places, where we all have dark moments. I suppose a nursing home is a distinct possibility in the future, as you are experiencing, and for my wife to be at that level of dementia is so hard to imagine that it breaks me up. Am I kind? I feel so self centred some times and selfish when I read of so much care you all have. Best regards Peter aka Dutchman
     
  9. marionq

    marionq Registered User

    Apr 24, 2013
    5,793
    Female
    Scotland
    Never ever be ashamed or guilty. You are doing what you can and it would be impossible not to be somewhat repelled by dirt and bad smells. This is where professionals are often better at dealing with these things than close family. Mostly my husband is compliant and likes to be clean but we have our moments too and it is desperately wearing.

    @Dutchman Can you arrange some respite? I know it is not easy to get as both myself and Johns social worker are doing our best as I know I need a break. Trying to keep going when things are wearing you down helps no one. Best wishes.
     
  10. canary

    canary Registered User

    Feb 25, 2014
    10,271
    Female
    South coast
    (((((hugs)))))))))))) Peter, we all get dark thoughts like that


    Please dont think that your wife is lazy or not doing things on purpose. The truth will be that she can no longer work out how to do things.
    My OH has stopped doing things and when asked why he doesnt do them anymore he says that he just cant be bothered or that he is too lazy, but this is just an excuse for himself. I have tried to help him do things and I know that the he really cant do them anymore.
     
  11. Granmother

    Granmother New member

    Jan 25, 2019
    3
    I have an escape room with all the technology sewing machine etc. While my hubby watches Tele downstairs.
     
  12. canary

    canary Registered User

    Feb 25, 2014
    10,271
    Female
    South coast
    Good idea :)
    What do you make?
     
  13. AliceA

    AliceA Registered User

    May 27, 2016
    2,359
    Once I was told I wanted to think for him, I have backed off and rephrased since.
    I bought mine headphones to hear better, I can now sit within sight and listen to things I find on my iPad.
    Football is on now, I glance check the score so I can make the right comments later, but potter i on here. Soon I will check out a talk I want to hear.
     
  14. Granmother

    Granmother New member

    Jan 25, 2019
    3
    I am 82 a retired sewing machinist. I have a few customers that I do alterations for them. I am also on Facebook with family and friends . Wed with Age Well with other members. That's me. I only joined on here 1 hour ago. Don't know my way around as yet.
     
  15. canary

    canary Registered User

    Feb 25, 2014
    10,271
    Female
    South coast
    You are doing fine
     
  16. AliceA

    AliceA Registered User

    May 27, 2016
    2,359
    Wellcome Granmother, we share an age. I spend most of my time on here in the I have a partner forum. Sometimes I venture into others. I look at recent posts when I first come on, often this has immediacy.
    You will soon get the hang of it. There is a guide on how to uses site, but I tend to go for trial and error!

    Alice
     
  17. Dutchman

    Dutchman Registered User

    May 26, 2017
    267
    Conversation, yes I remember that time. You know here was a time when I’d ask my wife to give me a chance to speak as she used to hog conversations. What I’d give to have that time again! Like you we don’t talk as she even forgets yesterday’s events. The ability to make herself understood is going and I feel so sorry for her as it must be frustrating and frightening. She was champion at word games, excellent at organising parties with made up games to play, run rings round me at Scrabble...now a 50 piece jig saw or snakes and ladders baffles her. If a devil of some kind invented a punishment surely dementia is good choice. Bless all of you for your kindness.
     
  18. kindred

    kindred Registered User

    Apr 8, 2018
    2,181
    Thanks, Peter, good to hear from you, really good. I think the brain damage means that they no longer really know what it is to be human, clean etc. I know, I know. Asking what you really want to happen is a difficult question and of course the answer deep inside is as you feel it. Of course it is.
    No, not self centred or selfish at all. I could say more but I am afraid, even on here. So read between the lines, Peter and really know I am with you all the way.
    with love, Geraldinexx
     
  19. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,336
    East of England
    [QUOTE="kindred, post: 1606592, member: 73387"Asking what you really want to happen is a difficult question and of course the answer deep inside is as you feel it. Of course it is.
    No, not self centred or selfish at all. I could say more but I am afraid, even on here. So read between the lines, Peter and really know I am with you all the way.]
    Yes there are still some taboos even for this amazing website. I felt very much for @Dutchman and the thoughts he expressed. We must wonder sometimes if life is worth living and I think that is only human. As a glass half full kind of person, I would say yes, but I still do wonder.
     
  20. AliceA

    AliceA Registered User

    May 27, 2016
    2,359
    Did any of you see the programme by Kevin Fong a consultant anaesthetist on BBC2 last Wednesday 'We need to talk about death.' ?
    It was very sensitively produced, he said although they could do so much medically the question was should they? Of course, the conditions were more physical but he said the treatments could cause more harm than good palliative care given early enough. The doctors involved all agreed that in many cases this did not shorten life but it gave better quality. This was a reference to cancer patients especially.
    It stressed the need for us all to be more open about death in general. Especially in what we want for our selves.

    Dementia often comes with other conditions, so wishes are not so clear cut. The importance that we tackle this early enough is apparent, it is also apparent that people do not.
    I have just been reading a book of Elizabeth Kubler Ross's lectures complied after her death. She always spoke of 'unfinished' business. How important that the person who is ill is helped with any issues in their life.
    So many cling on to life because of these.
    She also suggests that Carers should make sure that they too deal with their unfinished business otherwise they project their own needs on the person in their care. This is aimed at doctors too, she reckoned this caused burn out.
    (Physical burn out is something else)

    I am a bit lost at this point but I do wonder if in the early stages of diagnosis, counselling was offered as a cost effective way of easing people into a new and frightening situation. Many behaviours in life are reactions to fear.
    No less when we find ourselves in a strange country of brain illnesses with little knowledge, experience and a society in denial. The hours Carers work, are on call, surely contravenes the Slave Act. It is not help by lack of support, a lack of a listening ear, a lack of respite. I can hear the cry of Funding but look after the pennies and the pounds look after theirselves. (I could get political with a small p now but I will not!)
    I do read of so many heartbreaking stories on here and there seems scant support in the society surrounding them.
     

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