Don't mean to hijack...

[scaredwifetx]

Vince, I will start this reply with I am sorry. To you, the other pals, Steve and even the Cals. I am not sure I can find the words to explain this to myself let alone you. I can say I am sure your wife misses you also just like I miss Steve. This damn disease takes so much from the Pals and has Cals we can't do anything to stop it no amount of love can change its course. It changes us in ways that can be explained by me. I try hugging Steve and feel nothing but frailty and a deep sense of sorrow.

I hate that the affection we felt together is all but gone and it breaks my heart. I know we should have those moments but the fear of losing so much take over and touching body just makes me so guilty and sad for his in and loss. We as Cals want to be there but we also need to know how you feel

Tell her how you and reach out to her. I know b if Steve could find a way to show me he needs affection I would be there.

 

[lgelb]

Vince, everyone is right. Don't write that you think that she thinks you're repulsive or anything else. Just write how much you miss her gentle touch, the brush of her lips, language that transcends words, and that it has always meant everything to you.

Use only "I" statements and don't ask, just report. If she responds, it will help both of you. If she doesn't, it may still comfort her in some way. I don't think it will hurt.

Best,
Laurie

 

[Green Queen]

Vince
Would you have your wife read this thread?

There is so much love in your words for her.
Reaching out shows how much you care.

You've opened your heart to us, use some of these loving approaches given here, to open your heart to her.

You are in my prayers, Vince.

 

[patoyeah]

Vince, just my opinion, flirt as much as u can. Push yourself beyond what have ever done, beyond what u r comfortable with, or what seems reasonable. Constantly communicate u love her, and constantly flirt, call her gorgeous, sexy, beauteous, love of your life.

Bombard her non-stop with flirty language... dont ask her questions, and dont ask for anything from her... other than whats necessary for als.

Do not describe yourself in a negative way, ever... Never give yourself, or anybody else an excuse to not love u.

In our changed bodies, we might have to push ourselves to love ourselves, and might have to push others also. We may need to force the action, the fun, the joy, if we hesitate, others might not know what to do, or how they should act.

This progression may be too much, too crushing for many, keeping things light, and if possible silly, might be the most effective way through this.

Flirt non stop w / your wife, keep it light, silly, if possible...

 

[WendyWooG]

This thread is incredibly touching, it seems that several of us are in this situation. I have found this separation this loss of casual closeness the very hardest part of dealing with this illness. I know my husband loves me but this seems to have happened as a natural instinct to protect himself. Every time something goes wrong or he sees me upset he takes himself away somewhere to deal with it.

Reading everyone's opinions on here from both sides has helped. I have started asking for a hug, it has worked. No discussion of feelings, no telling him how I feel, nothing that would make him face things as he is not able to cope with that. Just a simple I need a hug, and I get one. Awkward at first but getting more easy more comfortable.

Thank you Vince for starting this thank you all for being very honest and open.

Wendy x

 

[Nuts]

What an important thread, thank you, Vince, and so much honest participation. Vince, you are so eloquent here that I forget you cannot speak. I hope you write your wife a beautifully as you write us. I can't wrap my head around the idea of not hearing my husband's voice. I've asked him to voice bank, and he has not. I fear the loss of that connection.

Others are right--don't put her on the spot, just tell her how you feel. The gentle caress, the whispered 'I love you".... Just as you've described them to us. She may fear that any intimacy will remind you of that which can't be regained. Just assure her that this is about intimacy and not sex.

I don't think I'd share this thread--give her her own conversation.

We love you.

Becky

 

[Barbie]

Oh Vince, I am so sorry. I think your wife is probably sad, and maybe withdrawing to "protect" herself. she doesn't realize how hurtful her behavior is. This is a hard subject to bring up but you need to do it right away, there is not enough time left to let it see where it goes...have her read your letter if you cant talk about it, she may not realize how withdrawn she is from you. I know that I tried extra hard the entire time my husband was sick to always touch him, pet him, kiss him because the human touch is sooo important to us all. I felt like you actually---so longing for his touch.

even if it feels awkward to talk about--what have you got to lose? could it be any worse? no. more than likely she will change her behavior for the better (after some tears I am sure) open communication is always best.

I also like What Wendy said--just ask for what you want...a kiss, a hug. my Lonny never had to ask, but he did use to say to me once in a while "I so wish I could hold you and kiss you right now" and that would mean so much to me and usually would result in me kissing him or hugging him.

I gotta tell you, you sound like a loving and wonderful husband. she is a lucky girl.

 

[BlueandGold]

Well I wrote her the letter. Wasn't demanding just said I missed her touch and reminded her of times when we are together when we may be able to steal a kiss or hug. I told her I can't even imagine the load she is carrying both physically and emotionally and if there was anything I could do for her I would be happy to. Like send her on a cruise with her girlfriends.

Well she responded that her plate was indeed full trying to keep my medicines straight and prepare my meals and handle her day job which is quite stressful. Said she needed time to unwind and she can only do that when she comes home so that's why she goes to her room. Said she was sorry I was feeling neglected but was confused because of how much weight she was carrying. That sentence right there tells me she wants me to back off. Said maybe sometime we could get away for a weekend but not anytime soon as she has so much on her plate.

I responded whenever the urge hit her to give me a hug or a kiss that would be fine with me. This is going to be the rest of my life.

Vince

 

[KimT]

Vince,
My heart is breaking for you. I don't even know what to say except continue to love her, to love yourself, and to know that there are so many people here who love you and care about you.

 

[pittsburghgal]

Vince, after reading your post I realized that this is exactly what is happening between my PALS and myself. We have been married for 36 years but the intimacy between us has died in the past couple of years. As some have noted, I think this is partially due to a defense mechanism. If I can hold myself at arm's length from him maybe the pain of the loss that is to come will just be a little bit more bearable.

I really feel like a caregiver rather than a wife. My husband can not do anything for himself now and is totally dependent on me. I am the only one caring for him. I feel that I do take good care of him and I do love him but I feel like I have nothing left to give. I am exhausted very often and emotionally empty. There is no more joy in my life.

My husband says very little to me about the important things like end of life decisions. You made me realize that he, too, may be missing the intimacy that we used to have although he would never say this to me. Thanks for making me aware of this. I only hope and pray that I can try to change this.

Sharon

 

[ShiftKicker]

Vince- I am so sorry for your loneliness. Being touched with love and affection is a fundamental human need. Isolation- be it social, emotional or otherwise, is another hardship applied to the already unimaginable burden of ALS. Tied up with feeling like a burden already, I commend you for your bravery in trying to address your emotional needs within your changing/changed relationship with your wife. I sincerely hope something is resolved for you within your relationship with your wife, even if it did not happen immediately. I wish you well.

 

[affected]

I'm so sorry Vince.

Her response tells me she is indeed feeling overwhelmed by ALS and all it has done and is doing.

She feels like more is required of her when she is giving all she can.

Please try and empathise with her, and consider finding a way to tell her something every single day about how and why you love her. Break her down with love and kindness.

I so truly hope she surprises you and starts to reach out to you a little xxx

 

[BlueandGold]

Thanks so much for all your replies. Means so much to me. I believe that being a caretaker will be easier to let me go than being my wife. I understand. But I will continue to write to her and tell her what a beautiful, strong and caring wife she is. Maybe I can sneak a kiss when she is propping my pillow or something

Vince

 

[Atsugi]

I would cop a feel whenever I could. Worked for us.

 

[gooseberry]

I second Mike.....I would joke with Steve when I was bathing him that things had changed in 30 yrs....