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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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Educ8r
Thank you for bringing this subject to light!!
It's a tough one!!
It's not unusual for men with dementia or Alzheimer's to become hypersexual.
As others have suggested, it's important for you to distinguish between caregiving and wife.
As uncomfortable as it is for me to admit, being a caregiver has completely drained my sex drive!
I am caregiver for two people not in my home.
I know that's totally different than your situation.
However, even knowing what I am going through, my hubby, even on my worst days, still wants to have his "needs" met.
In those moments, I dig deep and remember that I love this man!
I take his needs into consideration.
I do this for balance and peace!
I truly understand that this may be offensive to some, but intimacy is a vital part of marriage regardless of mental status.
I pray that you can find peace and balance!
Praying that you can still find intimacy in your marriage!
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I’d hire a caregiver and keep your previous role as his partner rather then mother. I understand how that happens I was married and my husband became one of my kids and we were still in our 20s.
If he still functions as a man that’s preferable to any thing else for men :)
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I wouldn't say its taboo..........and I am guessing he is experiencing some dementia.  The stages of that are so different for each person.  My father when he was 90 would ask my mother (86) to hold his private part but mom just couldn't do it because of how dad would lie in bed and moms arm would hurt.  He went thru this phase for a couple weeks, but she never gave in because she just couldn't.  There is no way someone/anyone can "feel sexy" when you have been working/caring for someone all day because all the "caregiver" wants to do is sit down and relax without any interruptions.  Maybe tell him to wait a little bit or wait until later (and hopefully he will forget)............its tough especially when its your partner.  I guess we all change over the years and then when/IF dementia hits........its a whole new world.  I am wishing you luck and rest.
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Based on your post it sounds like your husband doesn't have Dementia or Alzheimer's, by another debilitating disease. Which means, he still has his normal desires and hopes within the marriage. Whew! Caregiving is hard and emotional. I would be crushed if my spouse lost interest in me. This is personal. Many times overactive sexual desire (your spouse) or underactive sexual desire (you) can be caused by a variety of problems. Some can be medications, part of the illness or pure exhaustion as caregiver.
You married for better or worse and unfortunately you are in a healthcare worst. I would first talk to the doctor about medications for both of you. As we age, women lose estrogen, which can cause lack of interest in sex. Get tested and see if this is part of your issue. The other is time away from caregiving to give you a break, where you can go back refreshed as a spouse, not just a caregiver. If you have maintained good communication throughout your marriage talk it out. Give guidelines, once a week or only after a shower where everyone is clean and fresh smelling.
Doesn't hurt to try these things to see if it improves both of your outlooks and so you can end with a happy and satisfying marriage.
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Hey Educ8r
You already have a number of very good, supportive answers, so whether my 2 cents will help, only you can tell. I would suggest you consider what your times of intimacy were like before his disability. I remember, when having some marriage counseling before we tied the knot, that there are 3 pimary areas where most couples have trouble: substance abuse, money and sex. So, sexual relationships can be complex, even for people who do not have the added responsibility of care giving. Years later, I talked about this with a counselor before my husband's stroke and she asked a question?
"If he were hungry in the morning and wanted you to make him breakfast, would you do it?" I said, "Yes, but it might be a peanut butter & Jelly sandwich! I would rather have steak and eggs once a week than PBJ, 3 times." I got her point, tho, sexual appetites vary and it does not mean that is wrong!
I know that sex was one of the things my spouse still enjoyed, and after losing so much, I appeased him when I could. Yes, sometimes, resentfully, but then I reminded my self that after 45 years together, all the crises we faced, changes to us physically and mentally, he still wanted me!!
More recently, he has been unable to finish, and for the last 9 years or so, it was simply me taking care of him, meaning without a lot of penetration. I did not even want him to reciprocate because it was mentally tiring.
I know that I feel degraded sometimes. He still ogles me when changing or after a shower, He will reach out and smack my butt when I go by, but again, it is ME he is interested in. I am not disappointed that his performance is slowing down, I'm actually thankful, but I keep in mind that, even though the physical act was not what it once was, it still had the same meaning. I love you, and I am the only one who can satisfy this need.
We no longer share a bed either, but I do not mind. Many of you have given great advice. I see the caring between the lines and benefited from each of your comments, as well.
Wishing you all the best.
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NobodyGetsIt Sep 2020
Dear "bondoe,"

I think you are new to the forum and I just wanted to encourage you when it comes to responding to someone's question.

First of all, I'm glad you gave your comment in spite of what you said "You already have a number of very good, supportive answers..." I've been on the forum for two months now. There have been times when I'll look at a question and see they have plenty of responses so I won't have anything to contribute that would be helpful and move on. But, other times I will go ahead and put my "2 cents" in anyway. There have been many, many times when the person who asked the question didn't find it helpful but, obviously that person isn't the only one reading the responses. We may not help them specifically but, someone else will find something in our responses that is a "take away" for them.

So I hope you will continue to share your thoughts, experiences, advice and suggestions because you just never know when you will reach someone who will really need it even if the original poster doesn't.

I for one, enjoyed reading your thoughtful and considerate comments!
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maybe he wants to know that he is loved, unconditional love. and sometimes guys feel they need to be bossy...as wrong as that looks and sounds..
maybe he just needs to know you are there for him.. yikes... I am not good on this subject...
for better or worse. . the wedding vows... (?)
spin the situation around in your brain... maybe you can find your true answer there.
perhaps he still sees you long before this came up... (there I go again)
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I am a little surprised that your husband expects sex in any form if he is in such poor health and frankly he could handle this one situation by himself unless he thinks you are getting gratification too in some way. Just tell him that you just don’t have the drive for any sexual interaction now and you are just tired and leave it there. It is just not fair for you to have to do this if you don’t want to considering what all else you are having to do. You need some joy in your life even if it is a hobby of some kind. Do what is medically necessary and if you want to spend time with him watching a movie on tv or playing cards, fine. If not, you do something you want to do. This can’t be a life sentence for you. Go somewhere to eat with gal pals and hire somebody to sit with your husband. Preferably a male. He has too much down time laying around and his mind is going straight to “the gutter”. He is not working like you are. Good luck. Be strong.
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The only "agency of self" that DH hasn't already taken from you is your own body and what you do choose to with it.

From your description of his condition, sex with him would be a one-sided, unsatisfying (for you) CHORE.
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For anyone dealing with FTD please, please find the website and online support group for The Association for Frontal Temporal Dementia. They are very good and discuss everything related to this disease.
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Application of a personal lubricant like Astroglide to your hands and gentle stroking might be an option to consider.
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Sasha17 Sep 2020
Maybe give HIM the lubricant, leave the room and close the door.
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Educ8r: You're a wonderful person and you cannot be stretched to the breaking point. Prayers sent.
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You articulate my similar situation extremely well. My husbands FTD (frontal temporal dementia) is progressing a similar path and alienation.
I contacted his psychiatrist today who basically blew me off to Memory Care, which know little of FTD. This community of perspectives is a blessing. I stay mindful, take care of nursing duties, give myself minibreaks, and have a safe house to run to when needed in the spiral downward. The pandemic is certainly exacerbating everyone's irritability, and here in California, we choke with smoke from the fires.
It's a hard passage, my heart extends to you.
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I have faced many thoughts that you are having over the past couple of years and have felt so guilty but could not get close to my husband who I felt was not really my husband. I have been his caregiver for several years with his dementia and Parkinson’s becoming worse. He is now just a month in a long term care and the situation is so very sad. I will be able to see him soon and I know that will be even sadder but I am trying to be strong. I was just reading about Hospice and when it may be time to call them. He seems to be failing so quickly and I hope God will be merciful. I am 78 and we were married 60 years....it is so very strange to feel that this is the end of our life together but I am praying for strength.
follow your feelings and don’t feel guilty.
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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 2020
Well said and you are spot on about this. You have it figured out.
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Theres an old saying "men play at love to get sex, women play at sex to get love"
I didn't realize until I have become my grandfathers caretaker that men Always need sex...regardless of age, circumstances or ability lol!
'need' meaning that 'if hey do not receive it in some form, they self destruct'
Its impossible to wear 2 opposite hats in a relationship, as you are finding out.
If you continue taking care 24/7 with the same actions, you will get the same outcome.
If you get someone to come in to assist your husband, (at least part time) there is some room left for intimacy.
Its impossible to see ourselves & our own lives clearly.
I remind myself often of Albert Einsteins wise saying:
"Insanity is doing the same thing and expecting a different result"
I still repeat patterns that don't work ..however, as soon as im aware of it I change things :)
Hang in there..keep your head up...Remember, you Always have options :)
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I cannot even imagine the pain and grief this must cause for you. I have no advice but my heart goes out to you. A friend of friend's husband, age 51, became a quadriplegic after a sporting accident. It became impossible for her, even at that age. I hope you can find ways to take care of yourself. Wishing you love and peace.
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Consider this...there is more to sex than the copulation. Why not massage his skin, do some loving hugging. You will want these memories after he dies.
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sunshinelife Sep 2020
for a man a massage isn't what he has in mind...as women its what We want lol!!!!
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It is sickening when one's mentality changes and affects the remaining person. And why people with aging bodies and no physical attraction want to be involved in sex is beyond me. You can love and be close without the physical intimacy at this time of life. There are other ways to show love and receive affection. I would be very up front with him and assure you that you love him but you are now a caretaker, worn out, tired, etc. Tell him to buzz off and get help from the doctor. Ignore his ranting and raving - he is gone. Now think of YOU first and what keeps you going. The day may be near when someone has to take care of him other than you.
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It sounds like time for an assisted living facility--- perhaps with more male nurses ?
The truth is he is not the man you married.. right? Do what is best for him and yourself-- get some help-- you cannot carry this alone. It will eventually eat your breakfast, lunch, and dinner. It did mine after just four years-- and then 11 more in a ALF... and she was gone. I am burying her in October.
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elaineSC Sep 2020
Good grief!
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Dear "Educ8r,"

After reading the other comments, I was reminded of a couple other thoughts since my original post and how you truly aren't alone in having these feelings. I've often said, when we're going through anything unpleasant or difficult we somehow think no one else in a world filled with over 7 billion people is experiencing the same thing.


Someone doesn't even have to be taking care of a spouse to be in this position (no pun intended). Since my parents were 40 years older than myself, my time to start caregiving was at age 41. After my dad passed away, I did oversee my mom for ten years to varying degrees and then she was diagnosed with Alzheimer's in 2014. Even though she's been in a facility for five years there was ongoing stress especially dealing with her facility. It was crisis after crisis so I just couldn't handle all of it. Even the thought of the phone ringing with a problem caused me anxiety. Severe stress is not conducive to romance/intimacy especially when you have no support from extended family and no siblings to help.

Even if you talk to friends and family, they may be the least to admit the same issues. On a forum where no one knows one another, you are more likely to hear it like "it really is." As the old saying goes what goes on (or doesn't go on as is the case here) behind closed doors can't truly be known.

As for hypersexuality, I've read certain types of dementias have this as part of their disease more than others. I remember my mom visiting her sister whose husband had Parkinson's/Lewy Body dementia and he was trying to make passes at my mom (even several in-home caregivers couldn't handle it and quit). That did not go over well as we had known him for so long - it was very distressing for my mom who had just been diagnosed with Alzheimer's.

A man in my Alzheimer's support group had been married to his wife for over 40 years and they were extremely close during the course of their marriage and did everything together. She was no longer capable of any of those things and he missed the companionship. He had met a woman whose company he enjoyed. He wanted to know from the group leader if it would be ok to spend time going dancing and dining with this woman. Was that all he wanted? Who knows. I was approached in another group by a man whose wife had the disease and he wanted to meet for coffee at McDonald's around the corner for companionship as well. I declined as being married I didn't want to put myself in a compromising position.

As you said, the spark is gone - "Helenn" said "once spark (sic) gone...it's gone!!!" and Bruce Springsteen's song "Dancing in the Dark" says "you can't start a fire without a spark." So very true!

I hope you will follow through with your goal of several "getaway" days for at least your own enjoyment!
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sunshinelife Sep 2020
Very thoughtful post with insightful thoughts
I would offer with due respect is that women's assumptions that 'older men lose intrest in sex, as do women"...and in some cases, such as you, consider that sexual desire in an older or impaired man is an 'illness'...it is far from it...It is a sign of life...And the greatest driving force of Nature to procreate.
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Would a pile of Playboys help? I am serious.
He cannot understand, because of his dementia. I think that this is the more unusual outcome, but I may well be surprised when I return to the thread. Most of my former patients tell me that the sexual love aspect of love seems more to just go away, or get transferred to a cute young caregiver. Many told me that their spouses are happy enough just to sit holding hands and watching TV.
Other than just letting it "run its course" and not respond to it, I am not certain what you could do.
And James is right. This isn't a part of "wifely duty". In fact, what the heck IS that? Wifely duty. Is that like a husband has to be able to fix the clogged elbow under the sink?
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sunshinelife Sep 2020
no, but a bj would :)
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Oh, boy, do I understand. As an add on, you may also be facing the dimunition of his ability to be succSEXful. And, of course, there is your personal feelings which have changed.
Rest assured, he will likely start forgetting. You will need to be patient. Sorry I dont have a better answer.
Hmmm. another option.. tell him a lie he might accept...( You have probably done this.....Oh, hon.... I really feel awful..) Or, how about tomorrow? ( which never comes)
Although it is against normal "rules" with dementia, it is ok....in order to keep the peace. I initially did not see lies as ok......but then realized what a practical tool they were.
Good luck. It is not an easy path you are on. Been there. You can get though it, too.
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This 2nd post is for MIDKID58. Regarding the explosive diarrhea, I took my husband to gastroenterologist halfway through the Alzheimers/dementia years. Basically for a colonoscopy. Doctor recommend we change his diet to give him less gas. The diet is on the Internet, easily found. It is the FODMAP DIET. You can download the page which is the entire diet, listing good foods and bad foods. All that my husband liked for food, fruits, vegetables (hardly none), was listed as DO NOT EAT. This new way of managing his food really helped a lot. I never had to go through what you are on a daily basis, but when he went into AL (was there for only 2 months before passed), he started the daily soils, and his caregivers at the home took care of that with boxes of senior diapers. The FODMAP Diet is for people who have gastro problems that are uncontrolled.
Please look this up, copy the diet, and change foods, esp. fruits, vegetables (liike NO sauerkraut, cauliflower, broccoli, etc.) , Fruits allowed and not allowed also on list. Helped us a lot.
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ArtistDaughter Sep 2020
Thanks for this. My mom is having the explosive diarrhea and I suspect the culprit is her diet at assisted living. They say it is further cognitive decline, which makes no sense to me. Even the nurse practitioner there says it's incontinence. I had her out for a dentist appointment and walk in the park the other day and she was totally aware when she had to go and held it until I got her to a bathroom. Right now they eat alone in their rooms most of the time, so it would be easy to give her something other than what other residents are having. I'll do this research.
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I'm sorry you are having these changes in your life. I went through what you are, daily caregiving for 10 years or even a little more. Everything was fine for about 4-5 years, daily hugs, kisses, I love you's, and more. All of a sudden, one day he asked me to take him to his wife 190 miles away, where we used to live . He never had "another wife", only married once, to me. That's hard to take when you're sitting on the same double recliner with him, and he's telling you he hasn't seen his wife in 10 years. No matter what I said, did, showed him our wedding pictures, showed him on the wall of different studio pictures we had taken throughout the years, none of the woman in the picture was me, according to him. That hurt the hardest of my caregiving of him. Those DAILY episodes lasted for 6 years. I don't regret the time I had to devote to caregiving, and it wasn't until the last 2 years that I had opportunity to go out to lunch with friends, shopping on my own, etc. as I had him in adult day care then. I have to say, I didn't feel sick or disgusted on caregiving for him, I felt it was For Better or Worse, but once in a while a little remembrance would have made me feel worth it and loved. I did not, till the day he died. I couldn't even cry at his memorial, except for a few tears, just a little watering of my eyes, and after that no more tears, and still haven't cried and it's been over 2 years since he passed. We were married almost 59 years. Let him give you as many hugs and kisses you can spare, time is running out.
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NobodyGetsIt Sep 2020
Dear "JoAnne80,"

That would truly be the ultimate pain for oneself to be married for so many years and not be recognized as his wife and yet continue in the caregiving role.

What you experienced is truly heartbreaking and I've heard of many others who have gone through that too but, you are to be commended for fulfilling your vows "for better or worse" in sickness and health. I'm glad you had no regrets.
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I Have been caring for my husband with early onset alzheimer's for the past 6 years he has become like a 3 year old and I have no interest in any sexual encounters because I see him has a child. I can understand where you are coming from I have been married for 34 years , I have lost love for him because of the constant care giving and sleepless nights.
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angelarochon Sep 2020
I also agree with you I have been married to him for 50 years and the last five have brought me back to remembering how I raised my sons when they were little. I have given him his medication in his food because he refuses to take it as he isn't sick. But with the medication he doesn't get physically mad at me and lash out with his fists. My sons have supported me but we have had to educated the the grandsons about how they can't correct their grandfather and if they don't get it say go ask. . . This is a hard nut but as long as I can keep him in the house and not have to pay for care I will do it. Yes i have hired out things like grass cutting but . .
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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 2020
Dear "Jamesj,"

It was nice to read a man's perspective on this issue. Very well said!!
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You are both still human beings with "needs". He may not understand how much work you actually do since you are at home now 24/7 - caring for him. He may have expectations of "retirement" that included more intimacy. Dr. Chapman wrote about the 5 love languages: words of affirmation, gifts of service, quality time, gifts and touch. It appears that touch may be one of your husband's love languages and he is asking for love. Yours may not be touch and you are probably not getting your love requirements met either. Consider how you can meet his needs and have your own met as well... and it is not only about sex but about connection.

Since you are 24/7 caregiving, it might be a good idea to have a little more help. Widen the support network to family, friends, community of faith, and even paid help so you can get some "time off" from caregiving. You have needs, other than sexual, that must be addressed and usually require "time off" to do so. You may come to see yourself as more than just his caregiver and more like his wife.
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NobodyGetsIt Sep 2020
Dear "Taarna,"

Great comment!

Before my husband and I got married, we had to take a pre-marital counseling class and Dr. Chapman's book, "The Five Love Languages" was required reading. He's right about us as individuals finding different things to be important in fulfilling us and I actually think it can be applied to any relationship as those things aren't specifically sexual in nature.

Like your idea of widening her support network!
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If you don't "want to anymore", which I totally understand, but he still has needs and ability to act upon them, would you consider explaining to him that you're too tired, etc. but you still love him and want to please him? You could check out some other ways to satisfy him, even just stroking, etc. that might please him and his male ego. Just a suggestion, never been in your shoes. Bless you for staying with him.
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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 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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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 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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