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  1. #1
    Registered User
    Join Date
    Nov 2008
    Location
    Bexley in Kent nr London
    Posts
    225
    Blog Entries
    12

    Smile Out of the closet every day

    Hi all
    Living with a Partner who has HIV AIDs Frontal Lobe Dementia is a daily "outing" in every sense. I've certainly had to develop a high threshold for embarassment and accept that my Partner enjoys telling everyone we meet or who he can get on the telephone all about anything from our sexuality, sexual preferences, who's cute and who is not so cute to our tax situation and personal wealth...or not!
    He also takes enormous pride in disseminating his CD4 level and Viral load counts!! He has been less enthusiastic about the Mental Health Workers, especially Psychiatrists (unless they are cute!)
    Such openness to the Butcher, Baker and Candlestickmaker has changed our lives from just being Out and living together to a new "outing" every day.
    Fortunately we have been surrounded by good friends and neighbours and the Butcher and Baker now also know us well (not intimately) though Mark finds the Window Cleaner a cutie!!! So do I
    Well that's life. I used to be such a quiet boy from the Provinces. Now our reputation goes before us.
    Love to you all, from Robert, Mark & Buffy (our doggie)
    Regards Robert

  2. #2
    Hi Robert

    When you're living with dementia, the potential for embarrassment is huge! We have friends who want to discuss sex, money, family problems with all and sundry, though I must confess Mark's 'disclosures' go way beyond anything I've experienced!

    Thank goodness for understanding friends -- and a sense of humour!

    I must confess, John's early loss of language, though difficult at times, did have some advantages!

    Love,


    Hazel
    Carer


    Don't grieve for what you have lost, rejoice for what you have had.

  3. #3
    Hello Robert,
    Thanks for describing Mark's outgoing nature! There's something rather touching and appealing about people who want to share everything and anything. Mark certainly fits that description. It's wonderful that he is an articulate person still.

    My mum was very articulate once.

    Now she too talks and talks, at times, but for the life of me I don't know what she is trying to say because the words come out all wrong. Well, that's not strictly true. At times she says exactly what she means and often it is her surprise and shock that somebody, usually a carer, is so FAT.. Another embarrassing comment was " Who is that little man who keeps wobbling around all the time?" ( She was referring to the manageress of the care home.) I hurriedly remind people that my mum has cataracts and is not seeing things properly.

    My mum would never have been so outspoken in her former life, pre AD. She has an eloquence now of a different type and quality. She can be eloquent without saying a word. Her face is a pattern of messages throughout the day. Thank God she still smiles and laughs.

    Mark and Buffy are lucky to have your company. I hope the journey you are on is peaceful and also one with laughs along the way. Kind regards, Deborah

  4. #4
    Registered User
    Join Date
    Sep 2008
    Location
    Manchester
    Posts
    1,530
    Hi Robert.
    My wife spoke her mind before she got A.Z now she is rather quite
    and when she speaks sometimes she uses the right words but not in the right order,to misquote Morcambe and Wise!
    Best wishes to you all,John.

  5. #5
    Registered User
    Join Date
    Jan 2008
    Location
    East Kent
    Posts
    43

    Out of the closet

    Hello Robert

    Thanks for saying all that. I think I know exactly how things are.
    I am gay and my partner had a virulent type of dementia. One of the things I just hadnt bargained for was the fact that he would 'out' me most of the time we were together. He always kissed me wherever we were; in the dentist's waiting room, at the hospital etc etc and at first I was tempted to hold him off, but then, like you I think, I started to ask myself 'Who is the most important person in this situation and what is the most important thing about my life?' and fortunately I answered the question by saying 'He is the most important thing to me and our relationship is far far more important than the reactions of other people' So I went for it and I rejoiced in our relationship.
    He was in a residential home just up the road from where we lived and when he was 60 I made a firm decision that we would have his party, attended by our gay friends, at that home. It was a good learning experience for everyone in the home, but more importantly, it was a great party for us too. At one point during the party he simply went to bed and watched everyone enjoying themselves, and when the time came to blow out the candles on his cake, he did it and joined in singing 'Happy Birthday to you' in honour of whoever this party was supposed to be for!!!!
    Robert, if you havent already done so please look at our web site, www.alzheimers.org.uk/gaycarers and especially the article by Jeanette Meadway about HIV dementia (April 2007).
    Our love to both of you; keep in touch with the progress of your partner; and thanks so much for making your contribution.

    Roger

  6. #6
    I did enjoy reading your posts. What a wonderful, healthy outlook on life you show. My husband and I celebrated (well, as you say in your posts - he watched whilst we celebrated) our 40th wedding anniversary in August.

    Now that Ken is in a Specialist Demntia Home, we too kiss, hold hands, dance in the dining room on our own etc., and generally celebrate our love together and often feel a little 'exposed' as we are in such a public place and always the only ones doing such things. My lovely husband does sometimes make comments which, whilst shocking me (so out of his old character) also make me laugh and sometimes make me re assess my old, long held prudish beliefs in what is and isn't 'correct' in public.

    Long may you and your partners continue to show love (even at the cost of some embarassment).

    xxTinaT
    Last edited by TinaT; 24-11-2008 at 09:38 PM.

  7. #7

    Thumbs up Hello Robert (& Roger)

    Welcome to TP, you already demonstrate several desirable attributes every carer needs - the ability to cope with the unexpected, to deal with difficult situations with humour, and to share the love & humourous aspects of your life with us! Thank you!

    Please keep posting, and don't feel 'limited' to the Lesbian & Gay section. The main Support section is for all, black/white, short/tall, young/old, conventional/gay.
    We're all in this mess together and it's the love that matters, not the sexual preference.
    Lynne
    former Carer

    "Hanging on in quiet desperation is the English way", lyric line from 'Time', by Pink Floyd


  8. #8
    Quote Originally Posted by robertjohnmills View Post
    Hi all
    Living with a Partner who has HIV AIDs Frontal Lobe Dementia is a daily "outing" in every sense. I've certainly had to develop a high threshold for embarassment and accept that my Partner enjoys telling everyone we meet or who he can get on the telephone all about anything from our sexuality, sexual preferences, who's cute and who is not so cute to our tax situation and personal wealth...or not!
    He also takes enormous pride in disseminating his CD4 level and Viral load counts!! He has been less enthusiastic about the Mental Health Workers, especially Psychiatrists (unless they are cute!)
    Such openness to the Butcher, Baker and Candlestickmaker has changed our lives from just being Out and living together to a new "outing" every day.
    Fortunately we have been surrounded by good friends and neighbours and the Butcher and Baker now also know us well (not intimately) though Mark finds the Window Cleaner a cutie!!! So do I
    Well that's life. I used to be such a quiet boy from the Provinces. Now our reputation goes before us.
    Love to you all, from Robert, Mark & Buffy (our doggie)
    Hi Robert

    Your post did make me smile - I used to live in Bexley and now have a vision of everyone being enlightened in Dennis the butchers (I know they have moved from the village now).

    The webcam I would have an issue with because he could end up being exploited as he isn't making a conscious decision like he was 15+ years ago.

    As for the sex lines... well.. they cost RIDICULOUS amounts of money. Couldn't you trick him ... go in the other room, call him, try out your best accents... and have some fantastic phone sex with him!

    Best wishes to you both.

    Beverley x

  9. #9
    Registered User
    Join Date
    Jan 2008
    Location
    East Kent
    Posts
    43
    Wonderful reply Beverley!
    Your suggestion to Robert would make a great play. That's given me some inspiration!
    Hope Robert is still reading our LGBT stuff and can post. We havent heard from him for a while. Is everything ok Robert???
    Best wishes
    Roger

 

 

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