1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    This might bemuse a few readers and make others blush, but if you have read my past posts, you know I have no shame, and say 'bah! rubbish!' to dignity when it stands in the way of helping others.

    I'm just going to say that I think my Dad's illness has had a hugely negative affect on my sex drive.

    There I said it, just wanted to put it out there for anyone else who is wondering, is it me, is it age, is it my partner, is it hormones....when instead it could very well be this situation you are in ,caring for a loved one (I don't know if this happens when the loved one is your wife or husband, thus am posting it here in the younger dementia section for those more likely to be caring for a parent).

    Before AD I had a wonderful sex drive but over the past few years it has dwindled and dwindled away as Dad got worse. I have been to doctors, I have been to therapists but the fact of the matter is, the problem I find is, as soon as i relax and start to let down the walls, what crops up in my mind? My dad, my concerns for him, my sadness, my love for him....this is a real killer for the libido to say the least!

    There are moments when my hormones win out, but the majority of the time, AD is the stronger competitor. So if lack of sex drive is stressing you and your partner out, this little post may help ease your minds. Unfortunately it does not rectify the problem, but it brings me some comfort at least, that it is not a permanent problem and it is not due to other scarier reasons. (Don't hesitate to check out your problems though, to ensure that something physically dastardly isn't also going wrong as well.) Last but not least, I have talked about this with a psychologist and she confirmed that this is indeed a very plausible reason for such troubles.

    I don't expect too many replies on this post (if you are brave enough though please do let me know if you have suffered the same, even if it is by private message). Just wanted to help out by offering myself up as the example on a generally taboo subject.
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Good call on this one, and the post makes sense, and the Younger Persons thread is probably the place for it [though I'm sure someone will understandably say it is more general than that].

    However, in saying posting it here in the younger dementia section for those more likely to be caring for a parent). you do not include the younger couples who are experiencing Early Onset explicitly.

    For one of a younger couple where one parner has dementia, the well person has to make a judgement of the point at which the sex has to stop forever, and that is unbelievably painful, as it is a writing off of a major part of a couple's life together, and a recognition that the relationship is transforming into something completely different.

    It is also the point at which the love changes and [hopefully] gets stronger, but in a different direction. The day when the wife with dementia says "you shouldn't be getting into this bed" last thing at night is probably a day when intimate relations had stopped some time before, and if not, should stop now. The fact by this stage that sex would be the last thing on the partner's mind is immaterial.

    As usual, I agree with what you say, and would add only that the process does reverse itself and no permanent harm is done - provided the carer can get over their singular attachment to the person who has dementia. This is probably most relevant in the case of the younger couple, one of whom has dementia.

    One of the most common fears of the bereft partner is that "I will never be able to fall in love again" and that "nobody could ever be the same as [name]". Well, the first does not have to be true but you can't force it. As Kathy Mattea says in her song "you don't find love, love finds you" ... you have to be open to that, and to rebut what some folks may say very hurtfully "you can't have loved [name] all that much then" [and not to punch out their lights]. The human capacity for love is immense.

    An important point is that anyone who takes on someone who is/has been the partner of someone with dementia must be such a special person. We are all quite/very damaged by the situation.

    The second point "nobody could ever be the same as [name]" is in reality not so much a fear, more a tribute. Of course nobody could ever be the same, and the HUGE :eek: mistake would be to try and make someone else the same, or to try and find someone the same. "Vive la difference" really does apply here.

    Hugely difficult area, but people must have hope for themselves, even when they realise they can only do their best for their loved one.

    These things have to be aired, it is all part of the whole situation, and it affects the carer's own well-being.

    Thanks for raising it... I hope someone else will reply as well.
     
  3. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    I am guilty...

    Brucie,

    Just 5 seconds before you posted I reread my post and realised what I had said about, posting in the younger people with dementia section made no sense. I apologise to all those who also realise it. I have to instead admit that I was being biased because I want to provide all the help I can to those who deal with this younger form of dementia because I see it as a minority and worry about the shortage of posts in this section. I was thinking of people like me 30 something and supposedly heading into their peak sexual period but then are confronted with the 'delights of dementia' at an age where you never thought you had to worry about such things until much later. Its so distressing when you lose your libido at this age (I am sure it is distressing at older ages as well, but perhaps more distressing at 30 because you aren't yet expecting it!? Am I being ageist now??) All I can say is that I'm supposed to be in my prime dammit! :p

    So please feel free to apply this post to yourselves whatever age you are, and no I haven't forgotten that a lot of children of parents with dementia are older, and that there are a lot of children of parents with older onset dementias, as I say above I have found myself guilty of bias <hanging head in shame>.

    Please forgive me and ignore that part of my post.
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Er... Its so distressing when you lose your libido at this age

    of course you need to bear in mind that at 30, you have many years to search for, and find it again.

    people who are in their 50's and early 60's don't, and you will learn that while the 20's [some say you are past it anyway by 30] may be thought of as the peak of potency, their peak sexual period may be one of several, or even many peaks during the course of a lifetime.

    I think we all start off thinking that our situations are uniquely bad, and then - TP helps massively in this - we learn that Hell has many rooms, none quite the same as any other, but each one is unique in its ability to imprison and hurt us, and our loved ones.
     
  5. daughter

    daughter Registered User

    Mar 16, 2005
    824
    I would think that any unhappy event is almost bound to have some effect on your sex drive - it's one of the first things to go in depression, and boy is this illness a major candidate for depression. Still, Bruce is correct, the good news is that it can, (and very likely will), return, even when you're as old as us! ;)

    Just a thought - when someone dies, isn't it true that people often 'celebrate life' by having sex? It just shows how all aspects of human life are linked in some way, even if, on the face of it, they appear very unlikely.
     
  6. TED

    TED Registered User

    Sep 14, 2004
    154
    Middlesex
    Great topic and if I may I will add my own slant on this area.
    Possibly as a result of helping Mum and Dad out a lot more I just found that I wasnt having any time for myself and switched off sexually and emotionally with a lot of friends (as selfish as that sounds, it is however true, and no I dont mean I was having sex with all my friends ok.)

    However, as time moved on and I began to try and cope with how this was affecting me (I had councelling and time off work) i threw myself into relationships once more, I'm not proud of having one night stands, it wasnt something I did before, but felt the 'need' to remain active. And it was fantastic !! If I do say so myself. Now that I know I've still got it in me (oo-eer) I can cope with it easier.

    Now I have days off or weekends away with partner/friends and get up to all sorts of mischief. There is more that I wont put up on a public forum, but what Im getting to is that it's actually improved my situation in a strange round about way. (and they didnt complain about it either I might add....)

    I cant see myself settling down again for a while, as my first priority is to my parents, but away from that I am having some good times. You just have to make special time and get away now and again.

    Hopefully as Brucie and Daughter have suggested, there's still plenty of years and life in the old dog yet !!! Here's hoping .......

    Cheers
    TED
     
  7. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Nat
    I agree with most of what you say.
    I cannot agree about the age bit,you read these days that people have sex well into their 80s,it's true.
    When sex stops because of a partner with AD and the couple are in their latter years that is a disapointment,because that is the end,there will be no trying later.
    Anothe point ,if the fit partner is taking medication for some complaint could that be the reason for the loss of sexual action,or is it the AD?.
    We will never know.
    Norman
     
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    This is an area that we don't often visit on TP and the contributors so far have been sensitive to those who may read it, so let's keep it that way.

    There is a difference to be drawn between partners and those who care who are not partners. One difference is the feelings of loyalty that one partner has to the other - not to mention marriage vows! In a situation where the person with dementia may have a further 10 years of decline, the caring partner will have huge issues with handling this.
     
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Final reflective note of the day.

    The very worst thing - for the partner - about one's partner having dementia is not the sex thing at all.

    It is the loss of shared intimacy: of touch, holding hands, brushing a cheek, cuddling, shared jokes, shared tasks, conversations, planning for the future, etc ad infinitum - where all this is mutual. It is the everyday intimacy of life, the things that seem so ordinary when we have them and take them for granted.

    If one could keep that lot, then sex really comes way down the chain of things that one would want.
     
  10. McK

    McK Registered User

    Sep 13, 2005
    62
    Pgh. Pa. USA
    Final Reflective note

    Dear Brucie - Your "Final Reflective Note of the Day" posted at 6:42 pm said it all for all of us who have been caring for a loved one for a number of years. (In my case, going on ten years). When you are younger, you feel invinceable and then, tradegy strikes in unforeseen manners, and your perspective on life changes drastically. Our oldest son committed suicide two years prior to my wife's diagnoses of altzheimers, and plans for the future somehow were put on the back burner. So, on rambling on, I feel that I have something that no one can take or alter from me, and they are the many memories that I have of a loving wife and family. J McK
     
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I was so sorry to hear of your double tragedy.

    Yes, perspectives change with time and age, and everyone has their story to tell. The triumph of TP is that here, we learn of so many stories of very inspiring people! It helps to know we are not alone......
     
  12. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    The very worst thing - for the partner - about one's partner having dementia is not the sex thing at all.

    Bruce I find one of the most frustrating things is to rush in to the house and go to relate some happening or incidence to be answered "I don't know what you are talking about".
    The other one is not being able to discuss anything that needs a conclusion or decision,because you won't get one,you will get the same answer as to the previous coversation.
    Norman
     
  13. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    This is a tricky subject, not so much because we are talking about sex, but because it affects different relationships / ages / stages in so many different ways.

    In my early 50s I don't feel 'past it' yet, but my sex drive has dropped to a very low level, partly because I am exhausted and otherwise preoccupied, but undoubtedly also because there is no stimulus, no point. A smile and a hug is a highlight, kisses are far removed from any sexual feelings, and lust has gone right out of the window - who would / could I lust after now that my husband (as he was) has 'gone' ??? That's not to say that I don't occasionally let my thoughts wander back in time, but the sadness that all that, and so much more (see Brucie's / Norman's list of mundane things which now seem priceless!) has gone from our lives soon dampens any rising ardour.

    I consider myself lucky in that I have a fair amount of physical and emotional support from family and friends. However, that does not quite fill the gap during the long dark nights, when I can't sleep because my husband is awake for hours, or ease the loneliness when there is no conversation / togetherness / future .....

    The thought, that there may be time for me for a fresh start, a new beginning some time in the future leaves me feeling wretched, as it is like wishing my life away (and his!). And again, the 'sex thing' is by no means uppermost in my mind when those thoughts steal into my tortured mind: unencumbered time with my grandchildren (will they be too old by then??), peace of mind to read a novel, attending a concert without feeling stressed or guilty ......

    Nat, you have started a train of thought that is not ever so comfortable.
    I can't yet imagine not being able to cuddle up for a little while at night - until his strange 'body clock' tells him it's morning at 1am!!! - Best be off. Night-night.
     
  14. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Norman,

    I agree!

    But I had stopped rushing into the house to say something at the end of a working day when the following happened - way before Jan had any symptoms, and when she was absolutely normal. [just a Brucie anecdote].

    I had been invited to make a presentation at a conference in Montreux. I was away for 4 days and my colleagues made sure I was well tanked up each evening after the business of each day.

    Because we live way out in the country, I had arranged for my Mum to stay with Jan for the time I was away. I arrived home, thrilled to be seeing Jan again and I burst into the lounge, saying "Wonderful to be back, I've been pi**ed for the whole time I have been away!"

    There was a silence and Mum gave me a look. I realised something was wrong. Jan said "My mother died today".

    After that, I always curbed my excitement at seeing Jan again, and always asked first "how have you been?"

    All water under the bridge now.
     
  15. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Nutty Nan

    and we can all empathise with you in all that you say.

    The only thing that I would say is, just don't close any doors on yourself. You are correct, 50's is still a young age, though you you may not feel it all that much at present.

    Just take things as they come and enjoy the time you have together.

    I found the thing that changed me was Jan having to go into care, and I had no choice about that. With just a bit more time to myself, outside visiting hours and the almost 2 hours round trip each day to see her, I was able to figure out a new way of living. That took about a year. Mostly I did all the things I couldn't do when Jan was at home with me at the end. I watched endless DVDs, bought loads of CDs because music helped more than almost anything else. I took endless photographs as that was my main interest with Jan no longer with me. I did other things I had never done before and would never have considered doing in a normal state of mind. Mostly I recovered.

    Then I started to live again.

    But always making sure that Jan has everything she needs, especially my time.

    Keep the doors and your mind open, and take things as they come. We had no children otherwise I would probably have taken a different course of recovery entirely.

    ..... and enjoy the cuddles for as long as you can! Even if you find yourself mowing the lawn at 3am after a 1am start. ;)
     
  16. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Well, thank you all.....I did post on this aspect some time ago.

    Tonight I sit here in tears......You all say it so well.........A hug, that means SO much. A kiss, hardly ever nowdays, BUT I know that does not mean Lionel does not love me, just that he does not know how to respond.

    Somehow, somewhere, their will be a new life.........preferably with my dear Lionel, but life does go on, so I have to hope it is out there some day.

    SEX, does it really matter. Togetherness is all that counts. Goodnight, god bless, Connie
     
  17. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Don't forget us!

    A-ha, I am not the only one that is biased! (just teasing guys) But, yes sex is important when we are talking about those of us who aren't losing a partner, but yet our sex life is affected.

    As Nutty Nan said:

    I completely understand about the sex not being important with your lover, afterall would my man be marrying me in December were sex the most important thing for us, when my sex drive disappeared almost completely 2 years after we met?...(Poor guy, suckered him in and now he's left with Ms. Not tonight dear.... :p )

    Just wanted to reiterate that this post was also for those of us, who are having relationship problems at home because of the affects AD has on our ability to feel that desire. This can be extremely important because unfortunately your partner can start to think there is something wrong with them, you start to react badly to each other, one feeling insecure about your love for them the other worried that if they aren't able to show their love the other might leave them and so, the stresses just keep snowballing and god knows we don't need more stress in this situation! I'll also clarify why I thought at 30 it was a significant shock, as a woman I know I will go through hormonal changes when I reach menopause so have always been aware that that was coming, I did not expect it at 30, at least not such significant changes!

    On a final note, I'm sorry Nan that I brought on such difficult thoughts.
     
  18. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Don't apologise, Nat: I think it is for pure self-preservation that I usually try and avoid dwelling on subjects such as sex / the future / what might have been etc. ....

    There is a positive side to this 'conversation': I am considering showing your 'confessions' to my new son-in-law, since there is a strong possibility that he may identify with your long-suffering (?) fiance. Our eldest daughter is only a couple of years younger than you, and was married at the end of August. She is very close to her Dad and spends a huge amount of time calling in, brightening his day, thinking of things to make life a little more bearable for him, and supporting me beyond anything that could reasonably be expected. She has been very strong, mature and realistic throughout the last 5 - 7 years, but his recent rapid decline (following the withdrawal of Aricept!) has left her feeling sad, tearful, anxious and 'helpless'. I have always felt that her fiance/husband has had to put up with many years of her putting her Dad's needs first - even on their wedding day, she paused on her way to the front of the church to kiss her Dad (her granddad gave her away) to make him more aware of the situation before she joined her husband-to-be!! - if the sadness and worry about her Dad makes her feel the way you have described, it might help a little to be forwarned .....

    By the way, Brucie: I thought of your post at 2.30am last night, but it was a bit too dark and damp to mow the lawn ;) . At least it made me smile briefly as I watched the nightly storm take place in my poor husband's mind - - -
     
  19. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Glad to help!

    ...a smile is as good as a rest....
     
  20. Margarhett

    Margarhett Registered User

    Apr 30, 2004
    22
    Manchester
    I found this interesting reading and so will add my story my husband is now 46 and since he developed FLD two and a half years ago we no longer have sex. He no longer tells me he loves me without being promted. I am a nurse and now my husband seems just like any other paitent I have cared for.
    I love my husband we still sleep together but I miss the closeness which is a large part of the relationship, but facing facts we will never have this back.
     

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