Freedom and Frustration…

08 Nov

Our trip to the SCI Unit was interesting, eye opening, helpful and sad.  It seems that there is a lesion causing all of this, and it did not respond to IV steroids.  It is likely caused by going off Tysabri and taking a drug holiday.  It seems these changes are going to be fairly permanent as we are now 2 months in with very little improvement.

He is now fighting for his freedom at every turn.  What does that look like – well it looks like him refusing to use his walker and instead ending up falling down many times a week.  It means him dragging his butt up into his truck rather than use the very expensive turnout chair that the VA so graciously installed for us.  It means hauling himself up the 4 steps in the garage rather than allowing me to push him up the beautiful new ramp to the front door.  It means ignoring me when I am just trying to keep him safe.  It means laughing in my face and not responding when I try to reason with him.

He is fighting for freedom and I am so frustrated I could SCREAM.  Thankful I get a break this weekend as he is staying with the neighbors for 2 nights and I am going out of town for a movie shoot.  It will be a roughing it kind of weekend in a cabin with heat but no running water.  But it will be a weekend when I am only responsible for my own welfare and safety and no one will be defying me and fighting me at every turn.

I wish he could have his freedom back and I could let him be.  But for his safety I can’t.

1 Comment

Posted by on November 8, 2014 in Daily Living


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One response to “Freedom and Frustration…

  1. marilynn

    November 8, 2014 at 12:11 pm

    A word of advice since I have the same problem, no matter how much I try he wants it his way, just let him. It has taken me 12 years to just let it go. Yesterday we went to the VA to the SCI clinic and as usual I asked him to wait before he went down the ramp in the van. But oh no he could do it, well halfway done because of his hands shaking so bad he went off the side. Doesn’t seem like much but who can lift a wheelchair that weights a ton that was caught half on and half off the ramp. usual I would have been so pissed, but I just said well fix it, after awhile he let me. I just quit fighting him. I just deceided that I wasn’t going to let it upset me because it didn’t bother him, I think he actual enjoys seeing me upset. I hoe that you have been approved for Aid and Attendance, I finally hired someone to come in 3 days a week to be with him, for 4 hours. You cannot imagine how it has change my life. I have spent the last 12 years doing it own my own, and realized that I was just hurting myself. You need to take the time for yourself. I have watched him go from a man who did everything to being confined to a wheelchair and now is slowly losing the strength in his upper body. the doctor told me it won’t be long before he is bedridden. I wish I could change it for him but I can’t and for the first time in 12 years I’m going to start taken care of myself. I could tell you some of the stupid risk he has taken, and in the end I had to fix it. When I realized that I was beginning to really despise him I knew then I had to act and hire someone. We are both better off since I did. I hope the best for you and know that I know what you are going through.



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