Advice with intimacy

[missyg75]

My husband and I haven't been intimate since early 2013 when it started to become physically more difficult for him. I was also struggling with wondering if I was hurting him or things of that nature as we were trying to find ways to compensate for limitations he had in movement. As his caregiver and a full time teacher and mother I was also just too stressed to want sex at times.
The last few years have been rough to say the least. We grew apart, he was angry with me for not being what his ideal of a wife and caregiver should be. I had to back away completely.

With a recent breathing scare resulting in being put on a ventilator, we've realized we don't want to have him go without us being a couple again and spending as much time together as we can.

We recently tried to have intercourse. It was very different. I know it will never be the same. But how do I do it with someone who physically can only key there?

Looking for any advice and suggestions.

 

[gooseberry]

Intimacy doesnt have to be sex. It can be touching, fondling, etc. The ability to have sex seems to come in 2 forms with this disease....inability or increased desire. I would talk to him and see what you can agree on.

 

[Atsugi]

Heck of a first post. Wish we knew you better. What does "only key there" mean?

 

[Narrowminded]

Missy - I can relate to this being a difficult subject, it's been nearly 10 years for us. Partly due to his limitations, but early on I had surgery that made it impossible for a bit. However, there is the possibility you have more time than you may think. My DH (PALS) is also on a vent and has been for 6 years now. When he was vented initially, I didn't know of this group and didn't have all the info I should have. We knew the vent would possibly give him more time, but none of us thought that 6 years later he would still be with us, albeit in bed 24/7/365, with just some movement of 1 thumb, his eyes and a tiny bit with his head to one side.

I asked a question on another forum and the answer I received for how long was/has your PALS been on a vent. The shortest was 3 years and the longest is still going at 17. Everyone's journey is different, just wanted to let you know that your time for reconnection could be longer than you may think.

I want to wish you much luck as you work on this issue.

Hugs,

Sue

 

[missyg75]

Heck of a first post. Wish we knew you better. What does "only key there" mean?

It should say lay there.

I know it's quite the post for a first timer. But he encouraged me to reach out to other caregivers. So in trying. Trust me it's not easy to our it all out there. But I'm willing to do anything for our relationship.

 

[Atsugi]

Ahhh. Makes more sense now. Thanks.

I won't attempt to provide any insight from a woman's point of view. He'd probably just like any attention at all. Picking up his hands and letting him feel your skin through his hands might be nice. If he (with your inspiration) is able to have an erection, then I'm betting he'll be happy if you pay attention to it anyway you like. If he can have an orgasm, then by all means, make that happen.

As for getting some pleasure for yourself, I'll have to let someone else address that.

Another thought. Of course, he'd probably not like to be reminded of his current limitations, so turn off the lights and help him remember the old days with his eyes closed. Music from high school days and a sip of wine might be helpful.

 

[CSElliott]

Hi Missy. You're brave enough to ask this question so I'm going to be brave enough to respond. You're in a situation where, depending on your personality, you might have to do things that you're not comfortable doing or that you've been too shy to do before. It's totally understandable since a lot of women almost need the confidence of a man's physical actions and reactions, at least partly. Or many of us aren't initiators either. If you're willing to leave your comfort zone, find out what "non-traditional" intimate things turn him on and then consider getting creative - toys, things that are just visual for him but pleasurable for you, a strap-on if he's got ED and you have good knees, maybe erotic poems or movies, things along those lines. Maybe he'd enjoy you just telling him a good story about that time the two of you were at that place doing whatever it was and how much you liked it. Guys are all different - it's simply not true that "all men" like this or that, you can't really assume. Many of them genuinely aren't comfortable with things that might be considered weird or kinky to some, others are but won't admit it, some make no secret of it. But certainly most men like anything and everything having to do with sex, even if they can't really partake in it physically. I'd bet he will like this too, probably a lot. He'll also like the part where you ask first. So that's what I would suggest because struggling with intercourse at this point could actually wind up being frustrating or worse, so challenging for you that you wind up irritated with each other and that would only have the opposite outcome!

 

[gooseberry]

Blue and gold started a thread on this from a pals perspective. It may be worth reading for a different point of view.

Toys, visuals, nice lingerie might all be good ideas. The talking piece is the most difficult but necessary so you know which avenue to pursue.

 

[BlueandGold]

Missy,
My wife and I had no intimacy since my diagnosis. I have not progressed as much as your husband, but I am in a pwc, have a feeding tube and use the trilogy about 14 hours a day. Now when I talk about intimacy I'm not necessarily talking about sex (not for us) I'm talking about the loss of human touch; gentle kisses, hugs, rubbing his temples, running your fingers through his hair as you look in his eyes and let him know how much you sill love him. I believe human touch can be healing.

First, you have to broach the subject and communicate as best as you can. After our talk, my wife has shown me more physical affection than she has in many, many years. Obviously I can't reciprocate as well but taking the advice of Affected on this forum, I leave her loving notes on my iPad every single morning before she heads out to work. I tell her how absolutely beautiful, gorgeous, sexy, intelligent, kind, caring and more than I ever deserved in my life. Now, I'm in heaven every day. If you had seen how it started, you would never believe things would have turned out like they did. She is now again my beautiful, loving wife and not just my caregiver.

I wish you all the best.



Vince

 

[sweetmozart]

As a long term care partner/wife my advice to you is to do all you can to make it happen. Like with everything you've dealt with so far, you just have to make adjustments taking your own situation into account. In the end, you will take comfort in knowing that you helped make a horrible situation more bearable for him.

(You may find that it helps you to de-stress as well.)

Good luck

 

[missyg75]

We want to continue to keep trying and I'm trying to stay open mined. But things just aren't really happening the way I'd like. Its really frustrating. It almost made things worse like you said. But we're communicating and trying to find ways to please us both and to feel connected. That's what I miss most is that connection with him.

Thanks for your words of advice an encouragement.

Hi Missy. You're brave enough to ask this question so I'm going to be brave enough to respond. You're in a situation where, depending on your personality, you might have to do things that you're not comfortable doing or that you've been too shy to do before. It's totally understandable since a lot of women almost need the confidence of a man's physical actions and reactions, at least partly. Or many of us aren't initiators either. If you're willing to leave your comfort zone, find out what "non-traditional" intimate things turn him on and then consider getting creative - toys, things that are just visual for him but pleasurable for you, a strap-on if he's got ED and you have good knees, maybe erotic poems or movies, things along those lines. Maybe he'd enjoy you just telling him a good story about that time the two of you were at that place doing whatever it was and how much you liked it. Guys are all different - it's simply not true that "all men" like this or that, you can't really assume. Many of them genuinely aren't comfortable with things that might be considered weird or kinky to some, others are but won't admit it, some make no secret of it. But certainly most men like anything and everything having to do with sex, even if they can't really partake in it physically. I'd bet he will like this too, probably a lot. He'll also like the part where you ask first. So that's what I would suggest because struggling with intercourse at this point could actually wind up being frustrating or worse, so challenging for you that you wind up irritated with each other and that would only have the opposite outcome!

 

[missyg75]

Vince thank you for your perspective! Intimacy and affection are something we've always struggled with and have never seemed to be on the same page at the same time. We were finally at a good place when ALS hit us head on in 2012. we had a good year until he started to need more assistance and was hiding it from me and our kids. Then I got in accident and had a stroke. This changed me physically, but more so mentally. I never really got the mental and emotional healing time I needed. When I returned to work fall of 2014 I was teaching full time, taking a required online class, parenting two active teens, and caring for him all evening and all weekend with no help and no breaks. He wouldn't let me ask for help and I was starting to break down. Because of mt resentment at not getting to be just his wife anymore, affection went out the window. Things continued to get worse for us and we both continued to blame the other. Lots of other things with his parents and a rogue caregiver got in the way, We became estranged. In May he almost died and realized he wanted me back in his life. Since then, I've tried to be as affectionate and loving as I can. But it hasn't been easy as I don't always know if he wants me to. We've talked about it a great deal lately. I expressed that I need reassurances from him like you give your wife. I am not his main caregiver now and really want to focus on being his wife.

your perspective as a Pals has helped.

missy

Missy,
My wife and I had no intimacy since my diagnosis. I have not progressed as much as your husband, but I am in a pwc, have a feeding tube and use the trilogy about 14 hours a day. Now when I talk about intimacy I'm not necessarily talking about sex (not for us) I'm talking about the loss of human touch; gentle kisses, hugs, rubbing his temples, running your fingers through his hair as you look in his eyes and let him know how much you sill love him. I believe human touch can be healing.

First, you have to broach the subject and communicate as best as you can. After our talk, my wife has shown me more physical affection than she has in many, many years. Obviously I can't reciprocate as well but taking the advice of Affected on this forum, I leave her loving notes on my iPad every single morning before she heads out to work. I tell her how absolutely beautiful, gorgeous, sexy, intelligent, kind, caring and more than I ever deserved in my life. Now, I'm in heaven every day. If you had seen how it started, you would never believe things would have turned out like they did. She is now again my beautiful, loving wife and not just my caregiver.

I wish you all the best.



Vince

 

[CSElliott]

Missy I completely understand missing the connection, boy do I understand. I wish there was a better way to say...my heart goes out to you completely. You will find that you're still connected, even in the smallest ways. You won't lose it. I'm at the end now, today maybe, maybe tomorrow. We don't know but it's happening now. I look into his eyes when I can, when they're open, barely there and possibly he's not "there", I don't really know. But we are definitely still connected, our souls are. Be grateful for every day that you have the opportunity to interact physically, on any level and in any way. And savor it, try not to think about what you once had, it will only make you frustrated that you can't recreate it now...I know that is incredibly hard, I know. If you get frustrated, you will make up for it later when you figure out something together that works.