How can I help my spouse accept and understand that my caregiving role generally supersedes my role as a sexual partner?

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!

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!

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!

You might check with his doctor about his medications. Some meds for movement disorders can have side effects such as hypersexuality.

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.

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.

You’re still his spouse, so maybe just fondle him to make him satisfied or maybe even give him a little oral satisfaction. He’s still human and the man you decided to spend the rest of your life with through thick and thin. Sounds like you’re repulsed by the aging health challenged him, which is what you signed up for. Marriage will not always be peaches and cream and you need to face the music and realize that. That man needs you as more than his caregiver. You are still his wife. I’m sure if you were in his shoes, you’d want the same affection with no hesitation.

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.

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 !!!

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.

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.

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.

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.

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.

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.

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.

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?

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!

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.

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.

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.

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.

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 :)

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.

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.

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.

Educ8r: You're a wonderful person and you cannot be stretched to the breaking point. Prayers sent.

Application of a personal lubricant like Astroglide to your hands and gentle stroking might be an option to consider.

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.

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.