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Ten years has been the duration of my husband’s disease, which has made his movement difficult, and has weakened his cognition. The progress has been slow, starting out mild, and reaching advanced stages in recent years. In his early 70s now, he has various additional conditions, contributing to his poor health.


We reached the 30-year mark of our happy marriage, and then my new role as his full-time caregiver became another milestone for us. He is no longer independent at home, as he had been while I worked full-time during most of these 10 years of his disease. And, now during my full days with him at home, I cannot be the same person I was when we were together only evenings/nights, and weekends.


When he was alone on weekdays, and my caregiving role was evenings/nights and weekends, he had autonomy for his daily meals, medicines, and routines. As his caregiver 24/7 now, by contrast, I cannot spend the days in monitoring his success — or lack thereof — with the autonomy he’s had previously. I’m in this role, specifically, because he needed that much help to stay safe and well. Naturally, I’m not thrilled about this, and neither is he. However, we were happy enough to choose that option from a group of equally challenging options.


My love for him has become more in line with, possibly, a mother’s love for her own aging father. My caregiving for my spouse is now far from romantic, in my mind. I suppose the spark is gone for me, due to my own physiology as much as my repurposed love and affection for my husband. He’s quite different, often behaving more like a rebellious teenager would behave with family. Regardless of the stimulus for his spontaneous, frequent “be sexy now” instructions to me, I’m usually not inspired and therefore will not engage. To which he generally will choose to continue asking/ instructing/ taunting/ begging until he gives up.


I have no one to talk to about this, although I receive a lot of encouragement from friends and family. This is just such a very personal “taboo” for discussion, is it?

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I am not one of those people who thinks this is your "wifely duty".  This is your life too...it's not just about him and his wants.  It does change things when you are in the role of caregiver. There are stages in life and stages in relationships.  Don't be hard on yourself over this.  If the tables were turned and his days were filled with  having to wipe your bottom, bathe you, dress you, etc...I doubt his libido would be all fired up.   He could be exhibiting symptoms of a hyper-sexual stage and it is part of the illness and not his normal personality.  I have a friend whose husband is in an advanced stage of dementia and he won't leave her alone.  He is always grabbing her and trying to have sex with her all the time.  She won't even dress or bathe with him near because he is so aggressive about it.  I believe his doctor adjusted his meds to try to tone down the behavior.  Want to point out that this was not his normal personality or actions.

Sexual interaction should be a mutual agreed upon thing.  If you don't want to do it, then don't and don't let anyone make you feel bad about it.
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NobodyGetsIt Sep 3, 2020
Dear "Jamesj,"

It was nice to read a man's perspective on this issue. Very well said!!
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Dear "Educ8r,"

This is a very difficult topic at best and I don't have the kind of answers you are looking for. It would probably be most beneficial to talk to a counselor regarding these sensitive issues.

That being said, I can only offer you some understanding. One of the problems I see right off the bat is when you said your love for your husband has become like a mother's love for her own aging father - that would lead you to have a "this isn't right" or "taboo" feeling towards a normal husband/wife intimacy. Also, the fact that he behaves differently i.e. rebellious teenager that also, may be in the back of your mind as once again being "taboo." Undoubtedly, you are not inspired nor would anyone else be if they feel they are being given instructions to follow (and no one wants to be begged - that would kill spontaneity on the spot )so it's like the role flipped and you are now the teenager and he's the adult. All that does is create confusion within your own mind.

The spark is gone for more than just the repurposing of your love and affection. No one has an "on/off" switch. You have the fact that your not working your full-time job anymore in order to devote 24/7 care to him - caregiving is exhausting. The pandemic is not helping either as you are left with limited choices to help you get out of the house for a much needed respite and time away from him - some personal space.

Often in the caregiving situation, one feels trapped. It's very difficult to maintain a happy disposition which in turn doesn't make one feel the romance as in their more youthful years.

Even though it's not the identical situation you are in, I remember when my father passed away in 2004. It was the first death of a loved one I ever experienced and I was in deep shock and grief. I remember when my husband wanted to be intimate the following week. I just couldn't - my head was not there and in a strange way, it almost felt wrong to me.

I sure hope you will find a professional to work with you regarding these issues because it's really what you need for such a complicated situation with all the complex feelings you are experiencing.

You will be in my thoughts and prayers!
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Educ8r Aug 31, 2020
NobodyGetsIt, what an appropriate name for a caregiver to choose! Thank you heartily for your time and thoughts. In exploring the factors of my personal situation and my marriage, or my relationship with my husband (“in *sickness* and in health”).

My appointments with a counselor therapist began a few years ago and — except during Covid and other occasional breaks — they have continued monthly or bi-monthly. You are correct!
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You are probably exhausted on many levels. And the lack of "seduction" makes it more challenging. No one wants to feel like a vending machine in the sense of "give it to me now". Just feels like one more chore to do. When was the last time you had a long break and actually left the house for several days to go do something you really enjoyed? You need to take care of yourself so you don't burnout. I wish you much peace in your heart and refreshment for your whole self!
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Educ8r Aug 31, 2020
Geaton777, you are correct! I need to set a goal of several days in getaway mode, very soon. We are in transition lately, perhaps an excellent time to make a plan. Your comments are insightful. It’s exceedingly helpful for me, to know I am understood. The absence of that connection can cause a loneliness which sometimes seems leading toward emptiness.
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My question would be how old are you? I get the impression you are younger.

Do u have children? If so, remember when they were babies. The constant care for them. Not getting any sleep and if you worked...so tired you couldn't keep your eyes open...sex was the last thing on your mind. Same here. Now you are older caring for a much bigger baby. You just don't have the stamina you had when younger. Its hard to be intimate when you don't enjoy caring for someone.
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Educ8r Aug 31, 2020
JoAnn29,
I am mid-60s; when DH’s mobility disorder began with the diagnosis, I was mid-50s. It was jarring. Thank you sincerely for your support! I truly want to enjoy caring for my DH. It’s disappointing that my expectations for gratifying togetherness didn’t pan out, as we shared a fulfilling love. The metamorphosis in our roles was life-changing.
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EducBr,
I can appreciate your frankness, it is a difficult discussion to have for a variety of reasons. Sometimes this situation evolves in a marriage even when you’re not the “caregiver”. I totally understand when you say that your love has changed. My husband has not been able to “perform” for several years primarily due to extreme weight gain and ED. We are in our 60’s which seems young to give up on our sex life but it really became a one sided chore for me which he seems to have understood. We have been married almost 40 years and I believe we still have a close relationship, but it’s changed for sure. It makes me very sad. We both wish the sexual part of our relationship could be the way it used to be. I have just accepted it as part of aging.
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NobodyGetsIt Sep 3, 2020
"StrugglingSue,"

It is sad and although my husband and I haven't been married as long as you and your husband since we both got married later in life, we are dealing with the same thing. Unfortunately, with the aging so comes the health issues that can cause these unplanned outcomes. We still wonder if one of his surgeries played a role.
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Not at all a taboo. My spouse, whom I love very much and whom I will never leave until my last breath, had a stroke in late November 2011. He spent almost a year in care, including a really good skilled care facility. I honor not only my wedding vows (18 years married) but also honor the consent form I signed in the hospital to do the operation that saved his life. It worked in terms of saving his cognitive abilities but he's hemiplegic and needs help with just about all the Activities of Daily Living. I do all that. I have also taken over every single household chore, crucial financial decision, day to day ADL care, and monitoring his medical appointment needs. To be blunt, I do not think I should take on the chore of sex worker in addition to all this, because that's what it feels like. Don't you think you have to do it either. There's only so many pieces of yourself you can throw out there.
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elaineSC Sep 7, 2020
Well said and you are spot on about this. You have it figured out.
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It seems quite natural for sexual interest to be diminished (or absent) in a caregiving role. First, you’re probably exhausted. Second, as you’ve said, the nature of your love for him has changed to that of a parent or child, which doesn’t really induce sexual desires.
If you have had such a long, happy marriage, I’m assuming that you’ve had good communication skills with each other. It would be a difficult conversation, but perhaps if there’s a time when he’s feeling peaceful and not asking for sex, you could discuss the matter with him. Acknowledge his desires/needs for sex and describe how the interest is no longer there, despite the fact that your love is still there. Perhaps you can come to a solution together. I hope it works out for you!
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Educ8r Aug 31, 2020
DeniMo66, you’ve done me the favor of validating the ongoing honesty I have with him. I appreciate you! There have been regular conversations in recent years, which he sometimes internalizes — until he reverts to demanding, pleading, asserting indignation, preaching selflessness, etc. It was difficult to proceed with spelling it out for him in the beginning, with routine frequency, because I was concerned about offending or demoralizing him. I think he is a typical male, the gender known for thinking they’re desirable till the day they die. At the same time, there’s a realist in there who knows the score, I think.
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You might check with his doctor about his medications. Some meds for movement disorders can have side effects such as hypersexuality.
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Educ8r Aug 31, 2020
Vegaslady, that’s true. Thank you for asking the question! Hyper sexuality can be a symptom of the disorder, or it can be a side effect of the meds. Or both. None of his doctors — who are aware of our situation — have proposed a medication change. I have the impression there is a group of these tendencies, such as addiction to shopping, gambling, alcohol, or drugs. They are common, although not always subject to any remedies. I will ask directly when we see these doctors again.
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I have spent so many years in CG for my DH--one thing after another. You really do lose any sexual interest at all when you've spent an afternoon scrubbing out underwear that has been stained and is probably not worth saving--it's like I'm back to potty training. DH has issues with explosive diarrhea and can't always get to the bathroom. I have totally sympathy for him, but it's due to the fact he will NOT keep his diabetes under control.

Also--he treats me like the maid/cook/housekeeper and that is far from making me feel desired or loved. He has not kissed me on his 'own' for years. I have to go to him. He chose to keep a huge TV in the master bedroom over having me sleep with him. It's on all night long, many, many nights. I moved downstairs years ago, so I could sleep!!!

I told him, 5 years ago when I remodeled a room to be his 'man lair' that he could use this room as his haven--and he does, along with the bedroom. The idea was that the TV would be moved into the den---he still says he's going to do it--but after 5 years? why should I believe him?

He's never had much of a sex drive--ever. I am frankly shocked we had 5 kids. The odds were sure against it.

My sister who is 66 and whose DH is 69 still have sex 3-4 times a week. we haven't had it in 7 years and then it was like, I dunno, 3-4 times a year.

We don't talk about it. He will roll over on his side and put a pillow over his head if I ever tried to talk about it. I just quit.

Sure isn't the plan I had for us. He blames me 100% for the lack of intimacy. That I know for sure. But if he won't even turn the d2mn TV off for 1/2 an hour and give me some affection--you eventually give up.
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i really don’t think you need to beat yourself up over your feelings or lack thereof.... once spark gone .. it’s gone !!!!
your relationship is different now but you can still be the loving caring spouse, but I think sexual thing is done.
cuddling hugs caressing is nice ..
no amount of talk counseling can
bring it back.. I think you have more than enough to worry about now so I wouldn’t feel guilty about it ... things and relationships change .. it’s nobody’s fault!!!!
good luck with everything else !!!
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NobodyGetsIt Sep 3, 2020
Well said "Helenn!"

Life often throws us curve balls and it's nobody's fault - we just need to learn how to "make lemonade when life gives us lemons" as the saying goes.
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