Thank you for that post. You said what many are thinking, but perhaps are afraid to write. This goes to the heart of spousal caregiving.
When the emotional connection goes, due to any number of dementia related issues - personality change, rages, cognitive decline, lack of conversation, ad infinitum, the intimate connection goes with it. Sexual enjoyment can be faked; emotional and intimate connection cannot. Without the latter, the former, faked or not, does not exist.
we haven`t had sex in over 2 years but lately when I go to visit he will sayehe wants to kiss me all day and have sex, it`s a little embaressing as I always have one of my kids with me and grandkids so if I see it coming I have to change the subject fast, how do I handle this
I agree with Jeanette. a) clue in your kids, preferably with quotations from here or maybe the "understanding the dementia experience" b) change the subject - or would it work to play along.. as in, oh, you can't kiss me now, I have a cold coming on.. sorry, sweetie.. I don't know how far back the phrase "second childhood" goes (it predates Shakespeare, I'm sure) but sometimes that helps young parents themselves learn to relate. Although I agree, kids have a lot of trouble dealing with dad behaving badly!
Pamsc, that is a good point. Weejun My relationship with my DH is much the same as you described. I close the door when I shower and dress and I grieve the fact that I have to "hide" from my own husband. I do not leave him alone with any of the grandkids and warn their parents not to drop them off at any time when I am not home to supervise. He make lewd remarks to his 16yo grand son and his grand son's male friend and I was sitting in the room. I had to tell them it was time to go. His grandson was mortified at what my DH said. This is a cruel heartless disease but we have to be on our toes to prevents others from becoming secondary victims to AD.
When I realized that the sex had stopped, I was glad. It wasn't about me during the last few years that we "did it". It was only about him, and I just wanted out.
There is room for affection now, although not physical affection. There was always so much sex that there never was room for just cuddling or hugging. But the kind feelings are there, I think in both directions at least some of the time.
A few weeks ago, DH approached me in bed, started to massage me, oh you know, Anyway, i figured, oh what the heck. Well, it was like making love to a 10 yr old. Aside from the fact that he has been impotent for years (at least 10), he had just forgotten how to do it. he was so amateurish, and then I couldn't stop him, he just kept trying, OH my goodness, everything was actually painful, I'll never make that mistake again. I then told him, when I was finally able to call it a day, that he had not been capable for some time. and he hasn't done it again, but it was so unpleasant that believe me, I won't give him the chance. It's funny, because he had tried about a week prior, but I kind of joked him out of it. Well, I'll have to keep doing that.
I have posted on this subject before so I won't repeat myself, but, you folks have touched on the subject of what turns men and/or women on. As usual, my situation is different in that, as my wife's caregiver, I have recently had to help her shower (most of you know that she broke her ankle). This is a problem for me. I love to see her unclothed (naked) and to take my clothes off and get in the shower with her. This could be a real turn on, but...... Suffice it to say that in our 70's and with two terrible diseases, I still admire my wife, like to see her naked and would like to try to make more out of it.
But, as I have said before (am I repeating myself?), she isn't able so I have put everything, but my thoughts and admiration on hold.
You're very right Dean, and I have noticed this too in these discussions. The difference between how men/women operate sexually. Although, to be fair, like you, I do sometimes see mine changing clothes or whatnot and want so much for things to be like they were. But I know that I'd just see those blank eyes that don't understand, and can't relate to me.
I got up ver early this morning. Why, I was awakened by a body pressed up against me, in a suggestive manner. I rolled over and the body came with me, almost knocking me out of bed, So I got up. Maybe he was sleeping and dreaming, I don't know, I only know it made me uncomfortable, so I got up. Could have used a couple more hours of sleep today. i wonder what I'll face later.
You ladies are very kind, but, I want to clarify a couple of things. I shouldn't use the work 'naked'. It is kind of crass, but, my redneck friends will understand it better than unclothed.
Also, something I found amusing is that, when we were young, the old people (that's us now) (especially the old ladies like my Mother) would refer to old men that enjoy things like I described above as, dirty old man, terrible old geezer, only has one thing on his mind, and many other derogatory terms. Looking back, I wonder what they were really thinking. Maybe they talked like that to impress each other. They sure were Holier than Thou. In my Mother's case, I think it was all put on.
I ought to be more respectful since she has passed away, but, I think she would chuckle at this.
Dean...wanted to ask this the past few days so after one glass of wine here I go. Why did you state "she isn't able so I have put everything, but my thoughts and admiration on hold"? Have you tried?
Was at first shocked when I heard a friend mentioned how he had had sex with his late stage EOAD wife. Worked for them.
You are not a dirty old man..but a wonderful caring husband!
scs: My wife has cancer that has spread to her lungs, liver, and pancreas in addition to Alz. It isn't fair that one of the finest christian Wives, Mother and Grandmothers has two incurable diseases. She feels so bad, most of the time, that it wouldn't be right for me to be that selfish. At least that is my opinion and I'm the one that has to live with it.
But, Thanks for asking.
Hope you are doing well. Would like to join you sometime for a glass of wine.
Was not aware of her cancer. Poor darling....but if she enjoyed a full sex life before her illness ...it would not be selfish, if on a good day, she were approached. She might enjoy it as well. Obviously you know better.
Yes I figured there would be a lot of threads on this subject. I especially appreciated Weejun and her honesty. I am there too. Oh he is so nice and he is young and still looks good. Yesterday for the first time he forgot my name, and he paced incessantly.
And I cannot, I cannot make love to him. The guilt is eating me up. He initiated it the other night, just walked in to where I was resting and said it. (Not in the kind way he would have in the past)
Later he seemed to have forgotten.
Torn between the pity, and my not wanting to. He is too child like.
Hurting. Hating Az.
edit, I think the word "cannot" was wrong. Will not, would be more appropriate. And I am trying to make myself do it.
This is a very important topic, and I hope our newer members will read and respond. It is probably a subject they have not felt comfortable discussing, and still may not. But at least they can read and know that whatever difficulties they are experiencing, they are not alone. As long as the discussion is treated with respect and appropriate language, intimate issues, ideas, and problems unique to Alzheimer spouses are an integral part of this website. If you type "sex" into the search feature at the top of this page, a lot of discussions will come up.
Even at the ripe old age of 78 and my dh at the young age of 65...you might think I have a sexual advantage being married to a much younger man. No way...forget it. He has no interest or ability and has not had for several years. I have adjusted to the lack of any sexual part of our relationship as wonderful memories of a time gone forever. He still hugs me, kisses me and holds me close when we go to bed and always tells me how much he loves me. I love this and I do the same with him. We now are two different people and are facing a different life style where sex together is somthing of the past. Do I miss having sex with my dh...not so much. I have learned to enjoy my own company. Please, no shock and horrid comments...thank you.
JudithKB--I'm 63 and intimacy, even hugs and kisses, has been gone for years. i cope. In the last month, after havingbeen Pla cedat the end of Jan. DHhas decided he wants kisses. However, there are rules. I have to wearbright lip[stick. I am toclose my eyes.I am hold a neutral facial expression and not move my lips. He then gives me se veral short kisses (likeachild0 or one or two longer ones 9just touches longer). Som,etimes he follows this with a grin, pulls at hisTshirt neck and says, 'it's getting hot in here." That makes me laugh. He knows it will.
Do I miss the intimacy? Some parts more than others.
well girls that goes for both sexes. My wife though dearly departed could not understand why I could not have a sexual relationship with her as the illness progressed. How do you tell you spouse that as a caregiver you have put all you emotions on hold and buried them because you cannot make love to a child. When you have to wipe and wash there private parts having sex with them is all but impossible. She always thought it was something wrong with her but I would assure her it was me and not her. She accepted that without much question.
I share with sympathy all that you go through as a caregiver. Hugs to all. Bruce D *
for us it ended years ago - he started having problems in his 40s. When I forced the issue in his 50s the doctor gave him viagra, which did nothing. The doctor said if that didn't help, nothing would. I was so ticked off at the doctor and hb for not pushing the issue. The last time, a couple years ago, he managed an erection for a while but both of us were so 'out of shape' it didn't last long. He could always get an erection, but sustaining one was the problem. Because he would loose it would he started touching me, I blamed myself. Now I try to blame AD. Others here have mentioned that was an early problem, long before diagnosis. I guess for us it was that part of the brain affected. Now he will reach over and rub my leg with his finger in circles until the area is numb - really irritates me but I don't say anything.
Oh Coco, thank you for bringing this up. I have been wanting to say something for a while now, I just haven't – even though I know that you would all understand. Last year about once a week he would ask for “sex” & I would give in to him because I knew that it was the only pleasure he ever got. I really didn't want to but I did. He started asking less & finally he didn't ask at all. I was glad because I just couldn't anymore. Then about 3 months ago he mentioned it again, but I just told him no & he accepted it. It just isn't the same (but you all know that). Coco, I think both phrases are correct – I will not because I cannot. However, it has had other consequences. We used to love to cuddle, but I just couldn’t do that anymore either because when we would he would automatically expect sex. I'm almost afraid to cuddle now, because with everything he has lost I'm afraid he would remember that & I don't want that.
I drove up last September to Wasaga Beach, a multi mile long white sand beach facing Georgian Bay of lake Huron. I was dropping my wife off for the only overnight break of the year where her brother was taking her for the weekend so that I could go on the annual boy's weekend.
We passed a pine forest along the way and I started crying so hard I had to pull over and wait because it wasn't safe to keep driving.
We had passed one of the numerous spots where we had done one of my demure little wife's favourite things. Walk into a forest, find a soft place, and (cough) commune with nature. We hadn't done anything for several years for the same reason as Bruce.
You can't win. Either you want to but can't or in my case mini me with the Darth Vader helmet keeps popping up announcing what a fine day it is to go out. Yah right. I've had some times where I couldn't either and I'm not sure what that was and males don't like to talk about it. But I talk about it now.
(mini Darth Vader) "What a great day! Let's go out!"
(me) "Where's your bad back now? Eh? Oh yah! NOW you want to go out."
I do some work on the stamp collection. Always put him to sleep.
I am glad you needed to talk about this too ElaineH, it is really a difficult one isn't it? I have thought about "just doing it" to make him happy, but then, I thought, well what about me, and, he might not remember anyway. He is really declining..
Charlotte that would irritate me too, and how kind of you to not say anything.
Bruce D*, you wonderful guy for telling us that. Like I said in a previous thread, I have learned so much about MEN in this site, how much nicer they are than I thought. (grin) And I often tell others how wonderful men caregivers are, just like us ladies. Hugs to you.
divvi: I just knew it about you.....You just can't get enough sex...go girl go....(Hope you know I am just joking)...but, that was the first thought that came to me when I saw you were bringing up another topic on sex....
This has been stated by others and I'd like the men to respond. Even before AD, I had to stop asking for just a kiss & cuddle because DH ALWAYS thought that was an invitation to a full-on orgy. Do men really think that a casual kiss w/an 'I love you' can't mean just that? It made me sad.
No. Absolutely not. Now I know that some think every subject is about Davy Crockett if they're the outdoors type, or Freeing Willy for the nature lovers, getting out the Water Sprinkler for lawn afficienados, planting the Bean Stock, catching the Kimono Dragon, watching Magic Johnson, flying Woody Woodpecker, introducing the Master of Ceremonies, or just staying at home being Mr Happy, watching the Panda Express, Peter the Great, Pink Floyd, Pinnochio, (wait, I'm still in the 'P's) or the Purple Avenger on TV.
But I think it's unfair to charge every mail with being a Zipper Wookie or wanting to wave the Light Sabre around the room or play Uncle Wiggly all the time.
I think a little sensitivity by the womenfolk is in order here. If you grew a Hood Ornament every time I think you'd be a bit kinder to big dumb animals that have made up over 400 names for their Johnston where women have yet to come up with one. It's your fault. I mean, look at you. Sugar and spice and everything nice. And you blame us! Ha! Curse you Red Baron!
I know I speak for all men everywhere when I say all we want to do is snuggle. (Oh! Look!)
Your question was discussed somewhere else on this board a long time ago. Although I have no idea what thread it is in, I remember the answer because it made a lot of sense. What Wolf is saying, in simple terms, is that men's bodies respond whether they want them to or not. So if you want to cuddle, and your partner obliges with a big hug and kiss, his body automatically responds. What I find really sad and difficult is when their body is so broken, it is no longer able to respond.
Women can be like that too, some seem to be endowed with an extra dose of hormones. I know when I was younger I was that way, not to be crude. Just like a guy...ha ha sorry Wolf...looking for love in all the wrong places, and some of the time just for the recreation.
Then I became a decent married woman.
However I do not demean the male instant response. What a lovely creation.
Well, and in all honesty it's true in my experience that men aren't generally terribly good or comfortable at expressing their emotions or just having them. Just as in all things, some women are more masculine than males and some men are more feminine than females. In other words you can't tell all that much from the sex what somebodies sensitivity, emotive ability, ability to be honest or forthright with their feelings, and so on are going to be.
On the whole though I agree with Betty that quite a few men don't really get the subtilties of intimacy versus the sexual act. I find that extends across the entire sexual range. My wife and I had different signals but neither of us cared much for signals. I'd be reading in bed and my wife would roll over with that look and say "so, how are you?" or I might do exactly the same thing. We are the only couple I know that had to watch ourselves from talking too freely what we liked or didn't or found interesting or not. Other people in the room would turn completely white and exceedingly uncomfortable. I know not to call one of my friends on Friday nights. It's Friday so...
What I miss is her voice. Her smells. Her movement. Her smile. Her repetoire of looks from across the room that take a lifetime to perfect. (Can we leave now? Two minutes. I'd like to stay.) Our ability to know that something was wrong. Sitting in the car side by side for hours not talking. Being a pair. Wolf and Dianne. Bread and butter. We often spooned sleeping though it only worked one way. The other way she described as laying behind an elephant. Nice.
We all miss them and I know it gets tough when their behaviour changes.
Here's a friendly, non sexual {{{HUG}}} for anyone that wants it. I wish we all had what we really want but what we have are memories.
When I got married to my DH, I was just 29+3 days old and he was 47, just shy of 48 by a couple of months...the first 3 years were pretty normal for us. But then, when he started with the pre-diabetic symptoms, his flagpole started to have lots of troubles. It 35 years today that we have been a team and for most of it....well.... what can I say..... He is so macho oriented that if something didn't work as it should, the whole thing would just be abandoned. So we have gone YEARS with being loving roommates is about all I can say. I cannot imagine "romance" now with him, dear a man as he is... I cannot go from caregiver to frolicking babe. Thank god so far this idea has not crossed his mind.
I miss being kissed on the back of my neck by my DH that always put me in the mood. We are still able to cuddle each other at night in bed and I am glad about that. But nothing more for more than two years now and even before that it was rare. Our love/sex life had been failing for years before the dx.
Ah, you described it perfectly in the paragraph - "What I miss is her voice. Her smells. Her movement. Her smile. Her repetoire of looks from across the room that take a lifetime to perfect. (Can we leave now? Two minutes. I'd like to stay.) Our ability to know that something was wrong. Sitting in the car side by side for hours not talking. Being a pair. Wolf and Dianne. Bread and butter..."
That made me cry because it is exactly what I miss - the "in sync"; the knowing with a look; the private jokes with just a look; the "US"; the "JoanandSid". I have to push it to the back of my mind or I cannot function.
I miss all those sweet little moments when he would whisper sweet "muffins" in my ear but I try not to think about it anymore..too depressing and I can't do anything about it. So I let it go...The disease won out there too.
I know. It can rip your heart right out. And the more we loved them, the more we loved our relationship, the more intense is the sorrow. Whatever our love, the companionship and the partnership losses are powerful in their own right.
But. And I've had time to think which I couldn't have if I still had her with me, I know the final battle is all inside me. I thought about that when I had her, but it was only after months of having time on my hands and decompressing from the all consuming daily struggles, that I had any perspective - and it's not that great.
I have told myself after some time that I will never be the same as I was, but I have a fairly good idea of the range of possibilities. On the one end is acceptance in time and a re-engagement with life that's meaningful and on the other end is some combination of never getting over it and being permanently a lot less because of it.
I can't imagine how those of us with our spouses at home would be able to form real viewpoints on this topic yet. I certainly couldn't even though I thought I was. The best thing I said to myself then was "don't think too much just solve this problem and keep going".
There is hope Joan. It's not wonderful but it's important. She is in the care of professionals now where my real job is to visit and hopefully add a little something to what she has left (which I find very difficult). But I am now able to remember where for some time it was either/or. And I can speak about it as that post above shows and not crumble which I couldn't at first. And I can feel good inside about her without the saddness at times. I do the laundry and smile knowing she would be impressed. I also break down at the memories but I have no choice but to go through this and I'm not afraid of caring this much about it all.
It does no good to say the saddness should not consume us. It doesn't anyway because we get our jobs done so we're not consumed. And I think the right approach overall for the full time caregiver is to focus on getting through now. The only reason I don't take anti-depressants is that I would become addicted. I know myself through experience. So I agree with pushing it out of your mind and functioning as best you can.
It's not hard to understand that events of this power and duration affect our very soul - the core of what we are, what we believe, and the goals we take on. And ultimately it will be decided within us whether we come in time to accept the saddness and loss and learn to enjoy our memories - or because of the saddness and loss we lose interest largely and whither.
These are hard truths. And my message of hope to you is that by evidence of your actions for others in advocating and assisting directly including this board, and in the value you hold your memories of what was once great (even though they are currently sources of pain), your spirit is strong and it will find the way through. (Don't forget I've read your blogs so I take this liberty in the same manner)
Your board is entitled "The Alzheimer Spouse". And for me that has always been the focus. Not just the Alzheimer Patient. The Alzheimer Spouse.
The day will come where it would be very handy to have a manual that tells us how to unshrug the shoulders, put down the burdens, and learn to smile and love the things that matter again. I have not seen that manual.
But I am once again enjoying memories of her and us along with the hurt. I am working on forgiving some things all around. I'm starting to get my butt out the door. I laugh sometimes. There is hope.
PS - Your board is the deepest and most demonstrated evidence of humanity as it should be I have seen full stop
Thank you Wolf, et al. There's a world more of sex things I could write, much of it already discussed, and I'll never know what was the consequence of AD & what was normal marital stuff, or my own somewhat prudish nature and other junk in my head. We loved each other and the love/lust part was never in dispute, but sometimes I had the feeling he wasn't really 'there' in other things as well as sex and that put me off and I didn't know why at the time. I didn't know that I was sensing AD, but I knew 'something' was not right. How do you explain that feeling? And the kiss/cuddle scenario was part of it, it just didn't ring true. When he was in a facility, I'd sometimes find him asleep on the covers of his bed. I'd lie next to him, spoon-up to his back just to feel his warmth his heart beat, hear his breath, take in his smell, stroke the familiar fuzz on his forearm. We never had the 'best friend' or 'in sync' relationship some of you talk about, it was very traditional 'man/woman' stuff but done in our own way and we were comfortable and happy. If it wasn't for AD, I think we'd have done just fine.
Wolf I am in awe of your eloquence in verse. You are truly blessed to be able to put in words what others feel but are not able to say either in verse or words. My hat is off to you. I am happy to say that you have many times over these past years been able through your posts uplifted my spirit. I firmly believe that all who post here have a part in the healing and strengthening of all who come here for help. May the Lord walk with each and every one who asks. Bruce D *
Wolf - just read what you wrote to Joan while I was answering you. My DH died 10 yrs ago & I think many believe I am still all consumed with him. Not true. He has his proper place in my life, but his memory does not consume it. I never want to forget him any more than I'd want to forget my parents, I cannot erase only some memories and not others like cleaning a blackboard. My daughter used to say that I was living in limbo when I was his CG and that was true in many ways, those years were, indeed, all consuming. I have many reasons for staying on this board, but I do have a good life now without his being with me, it's just different. There were times I remember thinking, oh, God, what will I do w/out him. But, underneath, I always knew that I'd be OK, different but OK. I knew I'd be open to alternatives. I don't think I consciously ever dis-engaged. When Elizabeth Taylor's husband Mike Todd was killed in a plane crash and people berated her, she famously said, 'Mike's dead, but I'm alive.' During my years of CG'ing, there were times when I thought I'd just drive my car off the Santa Monica pier--and I can't swim. But I never did, Nature doesn't let us do such things so easily, we are programmed to survive--like it or not. We each get thru it in our own way. Oh, Wolf, after my DH died and later someone told me that they'd never heard me laugh before, I realized how much is taken from us and I also realized how much AD taught me--not that I was such a willing pupil. You're OK, and Joan will be, too, and most of the others. Sort of like toddlers who can't climb to the highest tree branch--it's a struggle, more for some than for others, but in time they can all get there.
My first time on the site. I am 41 and married to a slightly older woman (54). We always had a good sex life. 4 years ago when she was diagnosed EOAD the sex life was still viable, howefer the last 2 years have been an almost unbearable dry spell. Like others here mentioned fantasizing is a part of life now, but I think it does almost as much harm by placing a desire and glimmer of hope for something that will not happen. I have always been a shy type but even so, females have shown interest, and I would never cheat, but on these nights like tonight when I have been awake for hours I find myself thinking how much can one person take, then I feel so guilty for even thinking of such things. I willingly accepted this role of caregiver, and have not been away for even an afternoon to myself since 2008. I work, come home and have a whole other days work to do, then next day samething. I feel mentally and emotionally drained as well as physically exhausted, but it is nice to have a place to at least write down some of the frustrations. Sorry about the rambling and disorganization of this post.
mustang trainer--welcome to the site. My husband also has EOAD, so I understand what you are going through; we have our own special sorrows because of being in the younger demographic for this situation. If you haven't read it, please get a copy of the book, Jan's Story, by Barry Peterson. He's a journalist who works for CBS, wife has EOAD, and it describes his journey and finding a new partner after he moved his wife into an ALF. Perhaps it will give you hope and redefine what you call "cheating". Also, if you can, pull up some other threads on respite. If you haven't been away from caregiving since 2008, then you are clearly overdue for some. Of course you are mentally and emotionally drained and physically exhausted--you are human and taken on a superhuman task. You need to build a support system, find ways to delegate some of the responsibility of caring for your wife, and start nurturing yourself. It isn't an easy task to do this, but those of us who have been caregiving for years have learned that it's the only way to survive it intact.
welcome mustang trainer. so young, its even more devastating to find ourselves in this situation so early in life. like marilyn suggests you must work on getting some outside help so you can have a few hrs to yourself. no breaks only makes it so much harder on us. starting early to get them used to a helper is a good thing for them and us. there are many guys here who will identify with you friend. and women. your friends here will offer pats on the back and suggestions hoping it will help help see you through divvi