1. connie

    connie Registered User

    Mar 7, 2004
    Do I continue. I am so unsure of what is right and proper. However, I am a young carer, with a young sufferer, but whereas sex has finished for Lionel (he has diabetis as well, which also inhibites sexual activity), I would hate to think that this side of life is finished for me.

    Should I continue with this posting, I am not sure of the ettique. But life does not stop. I have posted many times about the loss of the life I once had with Lionel. Familiar story to many of you. One can cuddle and caress the sufferer, but it is no compensation for the loss of an active partner.

    I can just see the raised eyebrows out there, but it is part of everyday life. I raised this subject once, about two years ago, and quoted to Lionel what the carer's manual said " masturbation is in order, and is preferable to taking a lover", his reply was "why do you need too". Simple in his terms. Dont' get me wrong, I love this man, but feel there are many aspects of my need that are not being met. Sorry, if this post is offensive to anybody, Connie
  2. Michael E

    Michael E Registered User

    Apr 14, 2005
    Ronda Spain
    Connie hi,

    Look I think this is a problem for 'younger' carers and it is part of every-bodies life - we all do it or did it...

    My problem is that I really do not want to have sex with my wife in the state she is in... not quite sure why. I think it is because she is child like in so many ways - I know she wants to and I feel rotten about it. Certainly part of it is because I am getting older too and it is less 'urgent' but it has always been a very important part of my life. I love her to bits but do not want to have sex with her - difficult.

    There are a couple of 'opportunities' around for extramarital relationship but I have absolutely made up my mind that there is no way I will go down that route because she would be devastated and loose all the trust that has been so hard to build up again.

    Nothing wrong with masturbation - not going to go blind! Certainly better than having an affair I suspect. If people do not like these posts then they can not read them or delete them but it is all part of life for everybody I think...
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I've tried to raise this one on occasions [dodgy wording, I know] while I have been contributing to TP and the reason I have not is that I know many would think it inappropriate either on this forum and especially while a partner is still alive.

    Everyone has different sensitivities and relationships and feelings and needs. What no-one needs is to have someone else sitting in judgement.

    I found it appropriate to enter the Holy Order of Monkhood until a couple of years ago. No problems with that, though I was disturbed to find that I found some pretty gross women looking acceptable [and look at me - the equivalent of a clapped-out 2CV....not a bargain] in an academic sense....

    I always said that, after being in love with Jan for nearly 40 years since leaving school, I'd never find another person I could fall for, but conversely, that the only thing that could save me was 'the hair of the dog' - ie another love. I was ready for the skip.

    Fate is a great thing though, because - though Jan IS still alive, and will be for the forseeable future - I did fall for someone again, by happenstance and differently, but no less deeply - possibly more deeply in fact because now I know how precious each minute is, not knowing how long any of us have. Perhaps the fact that we all knew each other helped; perhaps the fact that I wasn't actively seeking helped.

    I see no conflict between these two women that I love. One day I want to be married again but until then, we both care for Jan and spookily, are like strange-looking teenagers in each others company. If only Jan were not in such sad straits, I'd say I couldn't be more happy.

    I don't do 'casual' however; tried it once in the 'interregnum' and it didn't work for me. With me, a partner isn't just for Christmas, if you get my drift.
  4. susie

    susie Registered User

    Nov 30, 2003
    Hello Connie
    How I sympathise with you and I can also see Brucies point of view. If you have read "the Selfish Pigs guide to Caring" it has a chapter on sex and all the problems that come with it. My husband is going throught the sexual innapropriateness stage and wants to kiss and cuddle everytone in sight-no matter what shape or sex. That does a lot for my morale! I have found that with all the changes to David and his personality change, I can no longer feel like that for him. I still love the old David and want to care for him but still try to show affection with gestures and cuddles and then distract when he wants more. Then along comes the guilt that you aren't giving them the sex they want but at what cost to yourself when you are just going through a ritual? It's a thorny subject and I feel that for the moment the nun's life is for me but as Brucie says who knows what the future will bring. If the right person came along I will have to rationalise all the guilt and see what happens. No easy answer is there?
    If you find a foolproof answer, I'm sure we'd all like to know.
  5. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    HI CONNIE.how brave of you to bring this subject up .i thought long about what i wanted to reply ,but by the time i got round to it ,i found SUSY ,had said it almost word for word ,whatever anyone in this position decides to do ,it surely cant be wrongANGELA
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Susie et al

    just to say that if the right person comes along you may not have to rationalise anything at all.

    If the right person comes along, then it is right.

    It doesn't mean disloyalty; there's nothing to feel guilt about, just intense sorrow and regret for what you both have lost for no fault of anyone's at all.

    What good could guilt do? It can't bring anything back.

    Would Jan have wanted me to want to live again? I think so - no, I know so.
  7. daughter

    daughter Registered User

    Mar 16, 2005
    I think Bruce is brave too, to tell his story. He could have chosen to say nothing but didn't.

    Some people (mostly women I have to say) may not be able to understand and will quote the disloyalty thing (I feel it a bit myself if I allow my irrational side to kick in!)

    However, after all is said and done after all the pain and sorrow that AD brings, is it such a bad thing to grab hold of a little bit of happiness if you have the opportunity and as you say, Jan would have wanted you to be happy.

    Good on you and best wishes.
  8. mandyp

    mandyp Registered User

    Oct 20, 2004
    While this doesn't really affect me, since Dad is caring for Mum.....just thought I'd put my opinion in. When Mum was diagnosed with AD I read up on it and read about the sexual thing. It got me thinking at the time.....what if Mum ends up in care and Dad meets someone else.

    One part of me thought, no he won't do that. But like you, Dad is still young.....but I thought no, I couldn't accept it. Since then, I have thought about it a fair bit and to be honest, I'm with Brucie, Mum would want him to have a life! At the moment, she's worried that she's being a 'nuiscance' and so far, things aren't too bad with Mum. All the while she's concerned with us missing out on things because of her. In light of that, in my opinion (for what it's worth as someone not directly affected in these terms), ultimately, we're all human and need a partner that can share in all aspects of life.

    I hope to be supportive of both my parents in the future, as sadly they will both be affected terribly and I really don't see it as any kind of betrayal.

    Thought I'd post my opinion since I guess children may be a consideration in this and wanted you to know that as one (albeit 35!), my Dad wouldn't be upsetting me, there are bigger things to worry about.
  9. connie

    connie Registered User

    Mar 7, 2004
    Thank you all so much for your replies. I have been in turmoil all day, as to whether my posting was wholly appropriate.
    I love Lionel to bits, but unfortunately untill you dig deep inside, he is no longer the lovely, funny, lover that I met those few short years ago.

    I could neverbe unfaithful to Lionel (and we are not married) whilst hye still has awareness, but your words, especially Bruce's , have given me hope for the future. Thanks, Connie.
  10. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    #10 Nutty Nan, May 1, 2005
    Last edited: May 1, 2005
    Dear Connie,
    Awareness must be the key factor in this quandary. As long as there is a level of awareness, my commitment would prevail and trigger guilt at the mere thought of being unfaithful.
    I think it is quite natural that the sexual attraction diminishes once your partner reaches the stage where affection and cuddles are essentially for reassurance. I never intentionally treat my husband like a child, yet I feel almost more protective towards him than I used to with our children, and whilst there are still very occasional brief moments of sexual innuendo, I am realistic enough to know that that's as far as it will ever get now. Strangely, what I miss most is the unsolicited hugs, the little special gestures, the feeling of being able to 'lean' on him, that I miss most.
    Having said that, sometimes it is good to dream a little, and to hope that somewhere in the future I might get a 'second bite at the cherry', not just with a sexual partner, but perhaps to fulfil all the dreams of planning, plotting, exploring, travelling, doing something spontaneous once in a while, and sharing those things that, for the time being, have to remain dreams.
    Here's to all our dreams! Take care,
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    ...just to clarify, Jan had moved to a specialist care home in 2001, she has lost vision, speech, mobility, awareness of me, and her poor body has become wasted and twisted - though I still find chinks through all that so we can find some form of communication.

    And in our changed circumstances - of course - I still love her, it only has to be in a different way now.

    We were such pals.

    And Carmen is quite correct, for my case at least, in saying that the main things one misses are hugs and shared company; those are the most devastating things to lose after so many years - the other stuff would [probably] go in time anyway. For me, love, company and hugs come first, anything else is a bonus and yes of course an intimate relationship is important, but it only worth having if it comes packaged with love for me.

    An age thing, maybe? Or maybe just a love thing....
  12. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Mandy, and thanks.

    Your opinion is a valuable one, though it may not apply so much for me as we had no children.

    It is always the strength of TP that we get so many views from so many angles.
  13. connie

    connie Registered User

    Mar 7, 2004
    Thanks once again for your views. Probrably did not quite make myself clear first time around. No it is not just a sex thing, it is the realisation that .
    communication and awareness of true life is fading between us.
    Yes I can keep Lionel happy in his world, but he is now more like a child to me than a partner.
    It is interesting the views from the point of view of children. Had not thought of that angle.
    Lionel and I are coming up to our 10th anniversary later this year, so then I will have known him longer with A.D. than without. Makes you think. Connie
  14. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Connie

    The whole thing about a couple is whatever ilk is the roundness of their relationship, the ebb and flow of feelings between them and the intimacy at whatever degree. When any of this is disrupted it is very noticeable, but when it mostly goes by the board, and the relationship assumes a parental flavour, then it is devastating.

    I spent many long months agonising over what the hell I would do with myself during the later stages of the dementia, and after Jan has gone. With no expectation of a new relationship at my age when left alone, I was ready to jump off the cliff immediately [and that is not a metaphoric cliff].

    When I had had such a close relationship with Jan, one that was so good, for so long, then I really didn't want to put up with less than that level of perfection - not even for the sake of a little company of an evening.

    That's when the new relationship snuck up on me unawares.

    It is naturally a very different one - I was always aware that it would be crazy to try and relive Jan's and my years through a new person - but is also an exciting one. We are doing things I have never done before, and now I have two ready made children and two fantastic grand-children.

    It IS the same level of perfection - like comparing a magnolia to a camellia; both beautiful things, but different in hue.

    Best wishes for your anniversary, whenever it may be.

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