In a previous post I read, someone (I'm sorry I don't remember the name) posted this: >I've had that time to come to some sort of terms with losing my partner in the romantic sense...it's really just not there for me any more,<
I have felt so guilty about this. The subject hasn't come up much lately, thank God. I just can't toilet, clean, and care for someone and then feel romantic with the same person. I, too, mourn the loss of that relationship (I'm only 58). There is just no way that I can think of John as anything but a shell of the man he was. For all intents and purposes, my husband is long gone. With him, left those feeling of romance, sex, and desire.
Don't feel guilty, Dolores. Its just a fact of the AD life. There are other topics titled ADLO insists I said yes, when I said no. And ADLO is so self centered I don't matter.
I was feeling guilty, and at first shy about bringing it up, but to my amazement so many responded, because our issues are normal in the AD relationship
I believe this is why Justice O'Connor was able to be "happy" that her husband found someone else in the nursing home.
We go through loss, pain, grief, and mourning for the spouse we once knew, and we go through it throughout the disease. By the time they don't know us anymore, we have experienced all the pain there is to experience, and for many, many years. And our spouses haven't been our spouses for a long, long time.
This is one of the main reasons I started this website - Our issues truly are unique. ONLY A SPOUSE UNDERSTANDS what this disease does to a marriage - it is a long, slow, painful death of a relationship. This website, and particularly these boards, have rid me and hopefully you too, of the guilt and shame we have been feeling. Just to know that we are not alone in our feelings is theraputic.
I have the same feelings about intimacy with my LO. My husband is 55 and I'm 50. I feel guilty about it also but there is only so much I can do, physically and mentally.
I too mourn for my lover and feel loneliness, sadness and the loss of physical togetherness. However, I believe that through the loss of our sexual union my love for him has changed and grown in a different dimension giving me a greater and more deeper understanding of love in all its manifestations. During our long , long journey of Alzheimers and its many faces, I guess my husband has demonstrated every kind of behavior a dementia person can exhibit including infatuation with another resident in one of 3 NH's where he has lived. That one really hurt me as previous to this he and I loved each other deeply. But I have discovered that my love though battered and bruised has evolved into a love distinctly non sexual but deeper and enduring even unto his physical death. Do not feel guilty my friends for your aversion to sexual relations with your husband/wife, the love is still between you, only different.
I have often felt so alone because I have been unable to talk with anyone in their 50s going through this with spouses in their 50s. I am 54 and my husband is 60 and this is not what I expected to have happen before we reached 25 years married. My husband doesn't really desire to be intimate anymore, but so far I have been okay with it. I try to hug him and cuddle too. He still feels love so I am going with that for as long as I can. Thank you so much for this place, Joan. There is nowhere else I have found that I can relate to as much as this website.
I have the opposite problem. My husband is 45 and I'm 38. He still very much wants to be intimate and I just don't. It is very weird for me. Right now, he is more like his old self than he has been in 2 years thanks to exelon and Namenda. But I just can't let go of all that has happened. All I've seen him do - had to help him do. I know that is my problem and I need to let it go. It's just hard. I think in some ways it's a self protection thing. If I give in and go back to being normal husband/wife at least as far as the intimacy thing goes, I open myself up for heartbreak again.
I keep telling myself that there will be a day when I will look back on this period as the "good ole days" and long for it. So, I need to get over it. I'm working on it....
Leighanne--I could have written your post. (except substitute Aricept for exelon) You've tried sometimes, you're right, to re-open yourself to having that intimate, pre-AD, closeness...and then you get clobbered with a booster-rocket of heartbreak. The vulnerability doesn't seem at all worth it. I can't do it. I try to have a loving, caring attitude, but I can never feel that way again.
Ditto, Ditto, Ditto to those statements of "making ourselves vulnerable to heartbreak." I still haven't grasped that I cannot "reason" with my AD spouse, but I try, and try to do him the respect of explaining why I am unable to feel intimate when I now feel that I only communicate with him on a cargiver level. I still love him, certainly. Which is why I WANT to care for him as long as is humanly possible. This past summer we had houseguests from out of state. We had people sleeping all over the house. So as to appear as normal as possible my DH and I retired each evening to our bedroom. I "gave in" several times during the period of company here, and got that awful heartbreak immediately after when I was insulted, hurt, and he didn't even remember the intimate act.
I guess I'm one of the lucky ones. My wife doesn't have any inclination toward sex and I am content with that. A lot of times, she acts like a 7 year old and I would feel like a child abuser if she wanted anything now. Most of the time I am that wonderful man who takes care of her. She says that she loves me, holds my hand and cries on my shoulder for comfort. So I feel that I still have a part of her with me.
The stress, guilt, anger,and grieving used to consume me, almost everyday. And explaining to DH every day my feelings about "sex without the intimate connection" nearly caused me to have a breakdown. He never remembers, yet he isn't to the point that I could distract or change the subject. He would obsess. Now things are calming down. I just keep throwing out a date from last August and tell him it was a very, very upsetting day regarding our relationship. It was heartbreaking (being insulted, accused of infidelity, of trying to destroy us) because he forgot we had just had sex that morning. I told him I don't deserve that, and my giving in unwillingly was not a responsible thing for me to do to myself. Period. He doesn't remember it all the time now, but I stay calmer now and just simply say "No, after that day in August I made it clear it will never happen again, and I refuse to allow myself to be hurt again. He sulks for a little bit, and thank God he is now letting it go. Praying for sustained peace.
Wow, I had no idea so many of you were dealing with the intimacy issue....that part of our relationship went away really quickly and I think a lot of it had to do with all the medications needed to keep his aggression, anxiety and depression in check...it must have killed his libido. Plus the fact that for many years he refused to change clothes or bathe and slept sitting up in a chair. Doesn't make for much of a romantic interlude. I am glad I didn't have to deal with this....I am sorry for you all you are going through it.
I just feel so bad about the whole situation...the last time was pretty good and I guess I want to leave it at that. It breaks my heart when I think about how great things were romantically and physically...we had such a connection. I guess I don't want to desecrate that. This can be such a cruel disease. I can relate to what Leighanne says, it is partially a self-protection thing for me. Sorry, feeling pretty sad today.
I'm so glad that you are finally getting some relief in this area. I hope your DH continues to accept your answers and doesn't go back to the way it was.
Thought I'd add my two cents to this discussion. Maybe a lighter note too. Someone asked about age after my post on another topic. My wife is not EOAD she is in her early 70's. In general I feel like Dave in that she is so child-like it would be wrong to expect sex. Many months ago, before so much hands-on care was involved, she initiated an intimate encounter but when her body responded she didn't understand and it frightened her so we stopped and I held her and talked to her until she was calm. That was the end of that.
Now she wears depends so I have to clean her and apply lotions and moisture barriers every day. If I wait and do the bathing when she is in a good mood it becomes a time for closeness and some joking and laughing. The other day there seemed to be more redness so I put on medicated lotion and more than the usual amount of moisture barrier. That required extra rubbing. After that I was rubbing lotion on her thighs when suddenly she squealed and put her hand down there. I thought something hurt her. Then she squealed again and got a big smile on her face. Then I understood what was going on--NOT FAIR:) Have an interesting day.
I want you and all of the spouses who write on this website about such inimate and heartbreaking subjects, to know that I am heartened that you feel comfortable enough here to share your feelings with us. We are the ones who understand.
I am not sexist, but I do feel that it is more difficult for the men to express their feelings (at least that has been my experience in my support group), especially on intimate matters, so I am extremely grateful that you feel you can do so here.
Your words and actions tell us that you are a compassionate, caring, loving man. Your wife is lucky to have you.
Even though M is in stage 6 and we are both in our 70's, she still likes some intimate time together at night. I have to take Viagra to make it happen. We also kiss, hug and pet frequently throughout the day for no particular reason. We just love each other very much and have for 42 years. Her medications keep her moods smooth. No scary ups and downs anymore.
I read that last post twice before I was sure it wasn't something I had written! Don't do Viagra yet, but we are 70, she is mid term and we get a great deal from holding and cuddling, with an occasional intimate moment. We have been married 51 years, and like C, medications keep things pretty even now?
It is very hard to let go of the very intimate side of a marriage that my LO and I had. This has been one of the hardest things for me to adjust to. Even through most of the sixth stage, we were still able to enjoy the intimacy, sometimes more for him than me, but, that is part of AD. I am 60 and my LO is 72.
In the 6th Stage of this disease, I could not hardly understand a word he was saying, but, during the times of intimacy and also just the cuddling and holding, he would speak so clearly. He would hold me tight and say "I Love You So Very Much". Then he would call me his "Baby Girl", which he called me from our first year of marriage on.
My LO is now in later Stage 6 and early Stage 7 of AD and is in a NH. He still lights up when I walk in the room and "I Love You" and "Baby Girl" still comes out clearly every now and then. He loves to sit and pat my face and I even got a back rub yesterday, but, with AD, everything is pretty short lived. Of course, I spend most of time with him holding his hands, kissing and hugging him and seeing that smile. I talk to him, but, do not know how much he is understanding. Maybe this helps me more than it does him, I do not know. The nurses all say that they feel he is trying to hold on for all he is worth to the last bit of intimacy and love that he can still convey to me. I guess none of us will never know for sure. This journey we are on is very strange.
On a lighter side, last week, when I was visiting my LO, he was falling asleep in his wheelchair after lunch, so, they put him to bed for a nap. When I got there he heard my voice and woke up. I walked in his room and sat on the side of his bed and started talking to him. He was smiling and out of nowhere, he pulled up his covers and said very clearly "Come On In". Remember, this is from a guy that does not say anything anymore, but, when he does, Watch Out ! LOL. But, as we know with AD, things change quickly. I started talking to him, and he fell asleep. Sound Familiar ! LOL
Because of all the meds Bill is on, He is unable to carry out his part. That doesn't stop him from feeling romantic at times. I don't have those feelings any more. I am content to be held close and just feel the warmth of him next to me. When we did do anything, he would forget within minutes and I would feel like how can he forget what we just had. Now when he feels that way, I will say not right now but I'll see you tonight. By night he has forgotten.
wow i thought i was the only one who didn`t want sex any more, my husband still wants it but it is so hard, he is always after me but if we do try he can`t perform so i get frustrated so i leave it along also , i feel like i lost him three years ago and i also don`t want to have that heartbreak again.we do hug once in awhile but that is even hard for me
Welcome. Yes, you will find an awful lot of similar feelings, and similar experiences here. My husband wanted sex so much more during a certain stage, but it is like he forgot he wasn't able to perform. It was so emotionally painful for me (and I know it was for so many here) to try to not be angry at the loss of intimacy. And then simply the loss of connection to him on any level.
Tell us more about you and your husband. We have a couple threads you might also post on call "Where do you live" "Age Groups of Caregivers" and more.
Lloyd has forgotten how, but he also forgot that he smoked so I guess there are balances. People have asked me if he still smokes and I always tell them he doesn't remember that he smokes. If he did, we would be living in a pile of ashes because he would have burned us down by now!!
Sometimes forgetting can be a good thing. Steve has forgotten that he dislikes someone, gave her a big kiss the last time she visited! You should have seen the look of shock on her face, I wish I had a picture!
I lost the desire a couple of years ago. My husband (59, me 46) doesn't really bring it up. Only occasionally. My worry is that I will NEVER get the desire back. :(