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BlueandGold

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Hi wonderful CALS. I know I don't belong here as a PALS but I just have to get your opinions as they are the only ones that count on this subject.

My wife and I have been married 31 years. We had a rough patch for a couple of years around our 15th anniversary but it was all worked out. No infedility, nothing like that. Anyway to get to my point, why has our intimacy faded? I'm not referring to sex as that was out the window 2 years ago for medical reasons. But hugs, kisses, stroking hair, the little things that say "I'm still in love with my sweetheart". I miss my wife's touch so very bad and every day that goes by I know I'm closer to never touching her again.

What she does for me right now:
Prepares and gives morning meds
Helps me take a shower and dry off
Blends me meals in the Vitamix
Gives me my evening meds

I know that's a lot but I do everything else for myself. I'm not a demanding man, never have been. In our 31 years, if there was ever something she wanted and I had a way to get it, it was in her hands as soon as possible. I love her so very much. However for at least the last 9 or 10 months she is simply my home health aid. I get no affection. I would love to be awakened by a soft kiss on my forehead instead of dishes clanging in the kitchen as she prepares my meds. When she is helping me shower, instead of a marathon "scrub off" in 2 minutes why not be gentle and after rinsing me off give me a light kiss on the back of the neck. When drying me off, wrap that towel around me and give me a 30 second hug. 30 seconds. Is that too much to ask? And at the end of the day when she gives me my evening meds, why not crawl up in bed with me for 15 minutes, snuggle against my back and rest her hand on my heart and know I'm still alive.

I'm so very lonely and hurt but I fear bringing any of this up for fear it might make things worse. I don't want to make her feel guilty. But I seriously only have months left according to my doc. This is it. Our last time to spend together. Should I bring this up or let it be? You guys are the CALS. Please chime in.

Vince
 

Nuts

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Vince, my heart breaks to read this. I think you should ask your wife to sit and talk through this with you. No blame, no recriminations, just questions. Tell her how you feel, and then ask her what's going on in her mind. The things you mention are simple, yet important expressions of love, and I would miss them also. Actually, I have missed them. Sometimes my honey just doesn't reach out to me, and I miss it. I don't know what turned that around, perhaps something I said to him, but I light up when he shows me affection.

Yesterday he asked me for a foot rub. I was ready to relax, but didn't tell him so. I asked him if the massage therapist (who'd been here earlier in the day) doesn't do is feet. He said not like I do. I also mentioned that the aid would be here for six hours and could do it. He then sweetly told me that they rub them, but not with the same feeling or intent that I do. I melted. It was one of the nicest things he's said to me in awhile.

Tell her how you feel!!

Hugs

(And you are welcome here anytime).

Becky
 

gooseberry

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This is very hard to answer Vince. I do not know your wife so I cant speak to her motivations. What I can say is take the first step. Reach out and touch her. Hold her hand, ask her to sit awhile.

We did a med student q and a. Intimacy came up. Everyone was pretty frank about there being no sex and let it drop. I explained there is an intimacy when you care for someone that can never be taken. However, touch is still very important in a non caregiver way. Early in his disease, Steve would get mad at me if I sat beside him, held his hand or rubbed his arm. He said it was overwhelming and to give him space.

Later in his disease, he craved to be touched. He never told me or asked but he needed it. So I would.

From a caregivers perspective, it is very difficult emotionally to see a loved one progress. For some people they have to put a distance emotionally, and sometimes physically, between themself and their loved one because they cant cope otherwise. The last couple of months, I was like I was out of body watching myself function. It was very hard on all of us.

It crushed me to be with Steve because I knew it wouldnt be long but I had a very difficult time not crying in front of him. Crying made him mad. I couldnt hug him because he couldnt breathe even if I was very gentle. I was afraid to touch him sometimes because he had gotten so boney.

I say all this because if you let your wife know, with a word, a touch, some gesture, it may open the way to understanding for both of you.
 

BlueandGold

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I have a feeling the distancing is just part of this disease. I will try to talk to her but a big part of me feels I just need to accept this as another symptom of the disease.

Vince
 

Jhill

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I'm just so sorry for how you're feeling. It shouldn't be that way.
I also feel that you should gently broach the subject to her, just to find out what she is feeling right now.

Hugs to you

Joan
 

gooseberry

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Vince, It is so very hard. Do kids, friends, anyone else come around? Your wife may be struggling and doesnt want to lay it at your feet. Please know we are always here for you!
 

affected

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Oh Vince.
You are not hijacking, you have started your own thread, and here is the right place as you want us CALS to reply. Thank you for trusting us with this.

I can't write a full answer to you just now as I really need to absorb and think clearly.

But I wanted you to know I've seen your post, and I care deeply about the suffering this is causing you. A virtual hug is not at all the same, but I'm giving you a huge one as a friend who cares.
 

azgirl

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Look at us pals sneaking in your private forum, sorry about that.

My experience is exactly like that of Vince. Although I know that my husband loves me very much, and does so much to meet my daily needs, it is the gentle touches and hugs that I crave and miss so much. Fortunately I get these hugs from my children, other family members and friends, but I am deeply saddened by the way the husband and wife relationship is all but gone. Like Vince, all that I am talking about is 3o Second shows of affection. When he looks at me all I can see is the deep sadness that has been with him for over two years sense diagnosis. We had such an excellent relationship before this, and this is the one thing ALS has stolen from us that I miss the most.

Perhaps it is a defense mechanism for them?
 

BlueandGold

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"Like Vince, all that I am talking about is 3o Second shows of affection. When he looks at me all I can see is the deep sadness that has been with him for over two years sense diagnosis. We had such an excellent relationship before this, and this is the one thing ALS has stolen from us that I miss the most."

Perhaps it is a defense mechanism for them?[/QUOTE]

Exactly! I also feel like my wife is repulsed when she sees how my body has transformed.

Vince
 

gooseberry

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Just my opinion.....It is very hard to maintain the husband/wife relationship because the stress and progression of this disease takes its toll. Caregivers are exhausted and pals feel guilty that they are causing the stress. Remember, it is the disease, not the pals causing the stress....sometimes as a cals, we forget that.

This disease robs us of so much...
 

BlueandGold

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I wish so much I could sit down and "talk" to her so she could hear my tone and feel what I'm trying to convey but I can't get out a single word. I have no choice but to write it and writing leaves do much room for misinterpretation. That's why I'm conflicted about bringing it up. It's amazing what human touch can do for you.

Vince
 

texastc

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It is hard for us Vince...to give the care...and the other too, don't really know why....just hard. Tracy wanted me to do that also. Wanted more than i could give...If you get my drift. I had a hard time with that, knowing she couldnt physically participate. I didnt hold her and snuggle her near enough. Now I regret that and I cant go back. Ask her...please just hold me...Tell her how much you miss her snuggles. I promise, she misses them too...It just hard. It makes you face it right face up...that these are now limited hugs...and you dont want to admit or face that.
I feel for you man...Ive been there, that exact place. If I had it to do over...I would hold her more. Every time when I would...I could feel her relax against me...blend, so to speak. I miss that terribly. She will too, probably already does, just doesnt want to admit it. I hope you can communicate that to her. Show her my post, if that would help. Sorry Vince.

tc

ps..in the hospital, in the final couple of days...i did just crawl in the bed with her and hold her. I will never forget that feeling, take it with me always.
 

bigmark1954

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I wish so much I could sit down and "talk" to her so she could hear my tone and feel what I'm trying to convey but I can't get out a single word. I have no choice but to write it and writing leaves do much room for misinterpretation. That's why I'm conflicted about bringing it up. It's amazing what human touch can do for you.

Vince

Man this subject is just brutal for me to read. Not because it is bad, but the reality of the subject is heartbreaking.

Vince.... go easy when you talk to your sweetie because she is certainly aware of this, and might feel as bad as you do. And please don't use the "R" (repulsive) word in talkling to her. I used that word a few weeks ago and my wife got really hurt, and pissed off.

This curse changes us mentally, I firmly believe this, and we don't rationalize as we used to. We feel lonely most of the time, we are jealous and feel just plain feel bad because we can't have normal relationships. We see that our spouse still has a semi-normal relationships out side of us. We used to think this was ok, but now it makes us feel guilty and ashamed about what we no longer can do.

We are closed in, lonely and anxious about life in general. The human mind is not conditioned for any of this.

Rant over....I tried to sugar coat this as much as possible.
 

affected

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I've been out gardening for a few hours now and I've been pondering, and reflecting, on what you have brought up Vince.

Disclaimer: I'm just a girl in the bushland of Australia, I'm not expert on anything, I can be wrong on anything. I just feel the need to say this at the start.

Vince, your feelings are so totally justified. You are so right - human touch is one of the most important things there is. I've watched people who care for a disabled person who is either their adult child, or they are a hired person. The difference that is apparent when you see those small things is huge. A touch on the hand, shoulder, head or knee only takes a moment but conveys such a huge amount of information - acceptance and love. That is what every human being craves most of all IMHO - to be accepted and loved.

Now the bit that is really hard for me to write as it kept coming back to me this way when I was thinking about it the past few hours. I kept thinking that your wife sounds like she is emotionally overwhelmed by both knowing the disease is robbing her of you and what you both had, and with being a CALS. She may feel like her well is completely dry. This has nothing to do with fault or blame, but with what dealing with this disease can do. Then there are all the emotions of grief that we all feel including anger and despair. CALS often feel like they just can't do enough because they can't stop the monster from doing what it will. No matter how high a level of care they provide, their PALS is going to continue to deteriorate and is going to die. The frustration and even guilt a CALS can feel is deep.

If she is feeling overwhelmed and you try to say you need something more from her, then as you fear this could lead to the opposite reaction of what you are craving. She may well withdraw further as it may put her in a panic that she just isn't doing enough. You know, and I know, that this is not what you are saying, but I can see you already recognise that it could go awry this way.

So what kept coming back to me was an approach that centred more around you voicing (bad choice of word and no pun intended!) concern for her needs. What I mean is that the way back to some intimacy, some feeling of love between you both, could revolve around reaching out to her, for her. Now I have no idea what her feelings or needs are so I'm trying to talk fairly generally as you know her and it could spark something in you that you know of. I'm loathe to give examples as my examples could be right off the mark.

But it could be anything like encouraging her to have time with girlfriends if she has stopped doing this, to get someone in to help with things if she is feeling she can't keep up with everything, encouraging family to visit if she finds that helpful. As I say I don't know what any of these specifics might be, but if she is running dry and can have her well filled a little, she may respond by having more to give, of herself rather than just doing tasks.

I think she possibly does a lot more than what you wrote as usually CALS find they are pretty much responsible for everything. Things that you used to do she may now have to manage, she may be advocating for you, arranging appointments, managing finances, and wondering what she is going to do and how she is going to cope once you are gone. The unknown about how ALS will play out also plays on a CALS mind and she may start every day wondering what is next. I always found that it wasn't the daily tasks that drained me, it was the emotional fatigue of managing and juggling everything. She may really need to know that you empathise with her situation. I'm not even remotely suggesting you don't empathise, or that you haven't let her know. Again remember I'm just thinking lots through without actually being there to know you both as people, or know the details of your whole situation.

So while I don't know the specifics, there may be so many things that are weighing her down that she doesn't even fully realise that this important part of your lives is gone, or she may just think that it is the way it is and nothing can be done to change it.

Another thing is can you instigate some kind of small intimacies? Can you lay your head against her when she is close to you and then show her something beautiful you could write about how much you love and cherish her?

You could start writing something every day for her - not something asking her to fill your needs, but something each day to tell her what you love about her, some happy memory, something you appreciate. It doesn't need to be long or involved, just heartfelt.

I know that my first response if I were presented with just a few sentences telling me how much I meant to my husband would be to reach out and gently touch him.

If you can find a way to reach out to her, to establish some touch between you again, then you could begin to tell her how much it means to you and how much you need it. If she has started to respond to your concern for her, she is likely to then realise that this touch has been important to her too and she had been feeling the lack of it and she can respond in love, not feel threatened.
 

affected

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I wanted to post this completely separately to my last post because it does not really bear on your situation.

I had the opposite. My Chris had behavioural FTD as most of you are well aware.

My Chris totally withdrew from me.
I did every care task for him slowly, with great attention to detail and affection. No matter how stressed I felt or how rushed I felt, I went slowly.

I constantly touched him, kissed him and he would go like a rock, refuse to make eye contact or acknowledge any show of simple affection.

It broke my heart more than anything else.

Mark you are right - Chris would say things like he was just totally repulsive and it was extremely distressing for me.
 
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