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Agree W/Mike and Goose!!
 
Vince,
We human beings are so complex. I would suspect the lack of affection and touch toward you is more about her than it is about you. With the way you write, it is easy to see that you are a good man. I wouldn't even entertain the thoughts about her not seeing you as attractive or desirable. I believe she is so caught up in her anticipatory grief that she sees little anymore. She is frozen inside with fear to the point of shutting down other than her ability to just do the basics. Probably she has always had some emotional fragility which now is just compounded. Some people through good genes and various life experiences do become strong and stay that way even when faced with the most awful trying circumstances, and they still think of others first. They are the people we call heroes. To me you are a hero. Wishing things were better for you.
Your friend,
Laurel
 
I think that every time you stop each day and write something lovely to her it puts a bright spot in your day as well.

I am really hoping for you that some of these strategies will help melt her a little as she is probably feeling the loss deeply too. If you can find a way to get past that a little it could give you both a lot of that beautiful human side of things we all need. I'm really hoping for you Vince. And yes, sneak a kiss, find a way to just touch her even with some proximity, without asking back and you may be surprised to find she starts doing the same.

Please do let us know, and thank you for opening up here and starting such an important thread!
 
Vince, I was devastated when I read about her response. I've struggled with whether or not to share this, but not holding back is what makes this place so special.

When I was caring for my mom, who I nursed back from a broken hip and then found she had previously undiagnosed Parkinson's, I was guilty of withdrawing from her. For two years I had less and less time for Matt and less freedom to come and go. She is a sweet woman and just wanted hugs. I found myself resenting the hugs. Why? I Did so much for her, but in retrospect that shouldn't have caused me to resent the hugs. I still don't know why I felt that way. I love her very much and she is an undemanding, sweet woman.

Here's where karma is a *****. I resented not having time alone with Matt. We would both do anything for mom, but we lost some years of freedom and privacy.

Needless to say, we have that time and even that privacy in spades. Freedoms not so much, but as I said, Karma is a *****.

I hope your wife is able to find her way back to the tenderness. THere is a delicate balance between showering her with love and pushing her further away, and you are the best person to judge how she reacts to you. I hope for both your sakes that she can embrace, rather than run away from, the life that you have now. She will have many more regrets in the future if she doesn't.

Darn it, I wish we could get a CALS train together and swoop in and hug you both.

Becky
 
Thank you for the kind words. But given the circumstances I should count my blessings. Yes I desperately miss the physical contact but I have someone taking care of me. We have pals that are on their own. That's just horrible. I'm going to do my best to make her feel special for what she does to care for me and just make sure I tell her everyday how much I love her.

Vince
 
Vince,

Thank you for sharing this, it helps me considerably. We too are married 31 years and also went through a rough patch. Our unfortunately happened right prior to diagnosis for my husband. Our problems was more his total and complete attention to the company we own to the exclusion of all else. It may be FTD as i've learned more, but other days I doubt it. I always felt it was the "power corrupts and absolute power corrupts absolutely" type of thing.

Anyway, we have now been dealing with this monster for almost 12 years, 6 of which have had him on the vent and unable to move, and loss of speach about 9 months ago. At first I was still very touchy, feely with him. However, things I have to admit faded. I think in part being overwhelmed wtih everything. The part I think is bigger is the way he askes for things and this even before losing his voice. It was always do this, do that. Never a please, thank you, would you, could you. Just demands. I've asked over and over for the magic words. He will for a day or two and then gone again. At one time he told me "I'm not going to say thank you for every little thing" I've tried to impress upon him how much those words mean. They help lift someone who is so overwhelmed up just a little, they give us a little air.

From reading your post, I have a feeling they are already there. I agree with those who say flirt, or tell her how much you love her. I sure wish my PALS would. I've tried asking, but get no where. Now true it could be FTD. However, he wasn't always very expressive prior to all of this, so hard to tell sometimes.

As other have mentioned, there are many things we do, that you may not think about and sometimes other things feel like piling on. I still work outside the home to keep our business going and I'm too young to retire. However, all household chores are now mine, no one to share with. Cars getting inspected and up keep goes to me. Advocating, getting meds, calling Dr's, cooking, cleaning, making DH's food (feeding tube), making sure all the supplies we need for his vent etc are in order. While I have nurses, I still have to coordinate all of that, grocery shopping etc. That's only the physical list, along with bathing, meds, feeding, suctioning (things you need done to or for you). Add on the mental stress and strain. At the end of the day I am exhausted and then it takes another 1/2 hour or so for bedtime prep. DH isn't tired as he's been laying in bed all day. I lack proper amount of sleep. What I get is always with an ear open to the vent.

I'm not trying to complain here, I'm just trying to express what you wife may be facing and feeling. It's not that she doesn't love you. I love my husband so very much and as other have said the thought of losing you is very hard. The losses we've already sustained also very hard. However, you have given me a lot to think about and areas where I need to improve and for that I thank you.

I pray you can see some improvement over time. And as others have said, if you do have any movement at all left, reach out and touch her. She will appreciate it very much, even if she doesn't respond at first.

Hugs,

Sue
 
Oh Vince, thank you for this thread. Today is my birthday. My Pals arranged for some flowers to be delivered and our son wrote his words on a card too. I was so chuffed that as I was positioning the sling around his back I reached down and gave him a hug. Well.....he hated that! I was shocked. It had hurt him and affected his breathing. Wrong! But this got me thinking about how to get the idea of intimacy to your wife. It could be as simple as getting someone to pick a bunch of flowers for her, or maybe a friend could deliver a small gift on your behalf? We get so caught up in the day to day chores of caring that we don't stop to enjoy little pleasures. In this way, you could begin the conversation a about feelings. We haven't slept in our bed for about a month now. I'm on the couch and my Jim is in the recliner. He was so matter of fact about it. I was so sad about losing the warmth of sleeping together but I still can't really discuss with him as I don't want to make him sad.he is losing so much and so quickly.
 
Sue, what similarities. We have been married for 36 years and the last 31 we have been married to our business! I know exactly how you feel. Even now, we all get issued with instructions and suggestions on the business at all hours. My husband says that it gives him a reason to keep going, & an interest. I just wish he could be open to some other interests like music or taking a drive somewhere!
 
Thanks so much Vince for this post. I think it has helped a lot of us see this from the others perspective. I have also felt those things you stated. I don't feel like a wife and partner anymore. Some days I feel like a "another chore that needs doing". However, I am still so blessed. My husband has been a wonderful caregiver. He is very in tune to my mood and always tries to make me smile by saying or doing something silly. We try to laugh at our situations a lot. I try hard to focus on the positives, although some days it's easier than others. I try to be gentle with myself and allow myself to grieve for my losses, and then look toward the positives. ALS sucks.....but IIWII. Sending you peace.
M
 
I have also feel that at times I am not as afectionate as I could be to my wife. I feel that this is because, as the main caregiver there are already a lot of things that I have to do for her (including handling -for lack of better terminology- multiple body secretions), to on top of that being an attentive husband. I found that it helps a lot having external help (nurses, friends) take over some of the time. I still have to take over all nigthtime routines (that involves not having full night´s sleep most of the time), but to be able to have some time for myself has made some difference.
 
Vince,
My heart hurts for you, I sensed something going on from other post you have had over the last few weeks.

Having read once the book "the 5 love languages" I must have physical touch to live. It sounds like something so simple but as it disappears from one's life it is excruciatingly painful (within us).

Tillie writes almost exactly what I want to say to you. I am in the same shoes as she, with Jon's FTD things are not the same. When he wants things, when he needs things, he is demanding, abrupt and without simple "please, thank you" and such.

Getting a touch from him, that is not connected to any of his wants or needs doesn't happen anymore. It makes me cry just writing this.

I want to touch Jon, I want to cuddle with him but it usually leads to "that is too tight", "I need this or that" and then even when I am close to him I do not get a touch or a kiss or a cuddle back, which hurts inside.

Our lives are entwined as CALS and PALS and the rift between us some days is not very wide while other days it is huge.

Vince and all you PALS and CALS I love each and every one of you.
Katie
 
In reality, it takes no longer to do any care task if you look your PALS in the eye during the task as applicable, and if you just touch them somewhere. It is not asking any more of the CALS so far as energy or time.

It is all about wanting to connect.

Connecting is a two way street. Whenever the connection is damaged, repair is always achieved by reaching out to the other person, never by telling the other person they better reach out. Of course there are no guarantees, but being prepared to be the one to reach out is paramount.
 
Last night, my wife watched a movie with me from my bed! We held hands for a little. How about that? Course she went straight upstairs to her bedroom after the movie but I'll take that any day. Felt so good just to have her laying beside me. Guess that's why I'm up so early, very excited. I'll make sure not to push her. Thanks everyone.

Vince
 
That is wonderful. Hopefully, the first step towards many more.
Your post affected me deeply. I just couldn't imagine living with this horrible disease and not receiving the loving touches that are desperately needed.
When caring for my husband, I always thought about the positions being reversed and how I would feel. I hope he felt the love in everything I did.

Many hugs to you!!

Joan
 
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