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what is this ? embarrassment of Dan


nancyl

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So this has been going on for awhile. I am sometimes embarrassed to be seen in the community with Dan. Not because of his behavior ( he has many). But because i think I feel his disability is a reflection upon me/ us as a couple. Kinda like GOD passed judgement and we were found wanting. I KNOW it is ridiculous ( it truly is) . I have always kinda felt like this. But I guess as I am moving through my thoughts and feelings of life i have decided to focus a bit on the problem and put it in writing - ( via stroke net).

Dan is very well taken care of , he is loved . But I kinda hate going out in the community with him. Part of this is in our little town of 12,000 people chances are you meet someone you know everywhere you go. Anonymity is impossible. I get tired of the questions - How is he, where is he, . And no one has ever made me feel like a inferior caregiver ( except Dan). I think some of it is - for a long time I pushed so hard to get Dan to want life, accept his condition - BE NICE-  but all the manipulations he could pull he did and does. He simply hates for me to have a life. I try to get him to come sometimes when a group of friends do happy hour - he refuses  - to loud. But he can't hardly stand me going either. When I take him back to the nursing home he will kinda pout. 

He has made references to wanting to go home live with me and my sister- but I am sure that will just be the past repeating itself. If it was gonna work to have him home it woulda worked in the first 4 years I tried so hard to care for him at home. 

 I imagine the shame or embarrassment i feel is some sort of self reflection of feeling the failure of being the great wife who did it all. And yet I would never never never recommend anyone try the intense 24/7 care of a individual who is so difficult. The food strike ( does anyone remember those? ) the seething anger that is usually just beneath his surface. The refusal to allow happiness into his life. The controlling nature . Everything has to be exact or he tantrums. 

I took him to MT this past weekend to see our daughter, he did something there that told me, nothing has changed. We were at my daughter In Laws ( great people) Dan refused to go out and tour their farm ( remember he was a farm boy) but nope he wasn't going out . So after lunch everyone else went outside except Dan and I, we watched a TV show and I fell asleep. Darn if he didn't have to wake me just because. I woke to HEY HEY. What I ask ? no reply, then the LETS GO started. So we left. Returned to the motel. It wasn't all bad and he got as much out of the visit as he put in, which, was probably all he is capable of . But I have a lingering resentment over that disturbed nap. Mostly because he can't just see me content. 

An of course he is not always like that. He does try. My birthday was March 20 - when I went to pick him up - he looked at me and said - Happy Birthday- and their are times he is so totally nice and tells me thank you. 

Like always I continue to look to him for affirmation - something even pre stroke he didn't give much of. 

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I can understand him being frustrated for you doing all the thing he can't do anymore but you have tried to do everything , in your power, to make him a part of life again.  His fits, he throws, are on him and I mean you have been accommodating . You are a good wife, caregiver and person... remember that :)  

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Ray had a lot of resentment that he was disabled, sometimes about me being well and so not understanding his plight. That is why Scallywags, the men's stroke group  he belonged to was so good for him, they were stroke-affected men so understood what it was like to be male and disabled.

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Sorry, Nancy....you can only do so much for him and if his motivation to be content with his current life isn't there, then it's not your fault any more than it is a reflection of your caregiving.    You know the old saying "you can lead a horse to water, but you can't make him drink"   that also applies to a brain damaged horse if you know what I mean.   I get the resentment all the time from Gary and the constant "when I call, you jump" demands.   He laughs and says "I don't care" ..thinking it's all fun and games for him, but I remind him that the time is coming sooner rather than later when he will end up in a nursing home.   Then it will be too late for him to care!!!    Your feelings are real, accept them and the fact that you can't change things, but you deserve a life whether he likes it or not.

 

Sarah

 

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