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?
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!
If he still functions as a man that’s preferable to any thing else for men :)
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.
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.
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!
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)
From your description of his condition, sex with him would be a one-sided, unsatisfying (for you) CHORE.
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.
follow your feelings and don’t feel guilty.
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 :)
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.
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!
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.
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?
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.
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.
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.
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.
It was nice to read a man's perspective on this issue. Very well said!!
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.
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!
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 !!!
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.
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.
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.