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Isolation


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I am a caregiver, so of course, I understand them better than survivors. It's what I know. Lately it seems, we have all been having feeling of not being noticed. It feels to me like isolation.

 

But, some of it I bring on myself. I know I do it. I have to do it. Case in point, my daughter and I decided to go out to dinner last night. It was way too hot to make anything and we have a great time when the 2 of us are alone. We enter the restaurant and see a friend of mine that I used to coach hockey with and haven't seen in months. He waves and asks us to join him.

 

Now, we both know that all we are going to talk about is Lisa. I know people are concerned and have questions, but that's all people ask us about. Not how are YOU or what have YOU been up to. Everybody I see.

 

Lisa has a website that is updated every day. People always say, "I saw on Lisa's website that...". Then if you know what is going on, why ask me about it? I hate to say it, but it gets annoying talking about my wife all the time. It's hard enough to, for just a minute, find an excape from what I am dealing without being reminded at the drop of a hat.

 

We turned down his invitation and sit by ourselves. We had a very nice dinner together. She is a "Daddy's Girl" and, even though she's only 15, has been my best support for the past months. I don't think I could of made without my little girl. As we were walking out, she said to me, "Thanks for not sitting with them. I couldn't take about mom all night."

 

I couldn't either baby.

 

Butch

 

 

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Butch,

 

I've told this story a lot but I'll repeat it again. When Toby Keith's song came out, Want to Talk About Me, I adapted it as my caregiver theme song. Don was---I don't remember---4-6 months out from his stroke when the song came out and it really hit home for me. People do forget that behind the survivor is a person who has emotional ups and downs and who feels like we get lost in the shuffle when it comes to getting support and understanding for all that we go through. And sometimes you just want to feel 'normal' again, have people interact 'normal' with you again. I don't know what the solution is for all of us....maybe with the website you could add a "Butch's Corner" and write a few lines about your stresses and accomplishments?

 

Whatever you do to cope with this, please know that your feelings go along with the territory. There's a whole thread on the message board about this topic. I think it's the "I'm Losing it..." thread in Classics about caregiver stress.

 

Jean

 

 

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You know Jean that would be a great idea. I would have to censor alot of what I say and think though. How can I keep Lisa positive if she can see or read my negatives? It's a double-edged sword. Yes, I can get things off my chest, but Lisa would see I'm unhappy at times.

 

I only have shown my true feelings in my blog and hope to keep it that way.

 

Thanks, Butch

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Butch,

 

I tried to protect Don from seeing my true up and down feelings, too. But when I finally broke down in front of him (it's described in that thread I mentioned above) it not only helped me, to get his comfort, but it also helped him to give it. We think we are hiding our feelings from our spouses but they know us really well and getting feelings out in the open has helped many of us caregivers....not all of our feelings, we can have some pretty dark thoughts...but some of them we do need to start sharing with our spouses again before the healing can start.

 

Jean

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Man, you're good!!

 

I've done the break-down thing and it was bad all the way around. I understand what you are saying. And as far as "dark" thoughts, I can't say I haven't thought of leaving the whole situation...for only about a second.

 

Thank you for your support,

 

Butch

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Butch-

what can I say. I understand. I completed my "challange" today- I asked the inlaws (in a non confrontatioal way) to mention to the family that I would like the opportunity to say "HEY!" when someone calls. They were very receptive, and I have hopes that they at the very least, will say hi to me when they call. If there is anyone you can explain your feelings to that you think would help you if they knew how you are feeling- TRY TO TELL THEM. Believe me, I know how much easier said than done it is, and I understand the guilt you may feel for thinking about yourself when Lisa is the one who had the stroke. I KNOW. Keep trying to talking about it- however causally mentioned, until someone gets it. Until you feel better, keep talking here.

I am telling you, PARALLEL UNIVERSE!

Take care of yourself, Butch.

Kristen

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