Freedom

I wrote the following in a MS Word document starting around 9pm tonight. I thought I was just writing it for my own release, but have a sense I'm supposed to post it on here. It's probably the most heartfelt thing I've written since this all started almost 11 months ago.

March 15, 2013  

Tonight I just feel like I need to write. For who or what, I’m not sure.  Maybe for my own sanity. More and more I am feeling demoralized.  This is a rather new word to me.  Dr. Gualtieri or his intern wrote that on my evaluation and the other day I looked it up, cause I figured that was how I was feeling, but I wasn’t even really sure of its meaning.  Google has this definition and it fits: “cause (someone) to lose confidence or hope; dispirit”.  While it is wonderful to be here with my parents and on the farm where there is more space and more to do, it is yet another transition which brings increased difficulties and so much to do and change, in the midst of the craziness it brings on Mike. Tonight I cried and cried while getting Mike showered, dressed, and while I was in the shower. I couldn’t even pray. Just kept asking God “how long?” and begging the Holy Spirit to pray for me cause I don’t even know what to pray anymore. I just feel like I don’t have any fight left in me. (oh my, here come the tears again). While I was putting clean sheets on Mike’s bed (an almost daily routine), Mike was making a circuit of down the front steps, through the kitchen (I guess) and up the back steps—over and over and over.  I just let him be, too tired to even worry or try to stop him.

One unexpected hard thing about being here is seeing everyone else go about their lives as usual with so much freedom & choice, and realizing just how much we’ve lost. There is no freedom for Mike or me. Especially Mike. (Although, I was feeling sorry for myself, not him.) Today when we were walking, he said “let me out of here”.  I said, Mike this is a great place to be, more room to roam, things to do, being with family.  He said it again.  Somehow the way he said it, it made me say: do you want out of your body?  He said “Yes!” No repeat of what I said or what he had previously said.  I really think that is what he means when he says it. He is literally trapped in a body and mind that do not function properly. People always telling him what he can and cannot do, dressing and undressing him, bathing him, redirecting him, not letting him drive anything, telling him he’s full, etc., etc. I am trapped in a brand new lifestyle of a caregiver 24/7.  I never really feel like I can relax or have freedom. I always have a time constraint even when someone else is with him and he’s usually on my mind when I’m away. How’s he doing? How’s the caregiver doing? I should have told them…. I forgot to tell them….. I hope he cooperates with them. I hope they remember….and on and on it goes. When I do have time away or when someone else is with him, I’m either running around taking care of things, or I seem to go around in circles and have trouble gathering my thoughts to know what I need to do. It is hard to think of going and having some fun. Fun?  What would I do for fun anyway?  And with whom?

Anyway, thankfully, tonight Mike went to bed willingly.  The past two nights have been very difficult.  I am cutting back on his Risperdal and he didn’t have any the past two nights.  Tonight I just couldn’t take the frantic pacing around and repeat, repeat, repeat so I gave him a .5mg Risp., we watched an episode of Band of Brothers, got our showers and I just let him make his circuit. As he passed by one time, I told him to let me know when he was ready for bed.  About 8:30 he said “I’m ready for your bed”, he’d seen me making it as he passed by and he had to be exhausted.  He makes me exhausted with his constant motion. That was another reason I gave him the .5 RSP. I figured his body and mind needed the rest as much as I needed the peace and quiet and an easy night. I had no idea it would be that easy. Thank you Lord. Then I came in here to read a little and this is the verse that greeted me: 2 Corinthians 3:17 “Now the Lord is the Spirit, and where the Spirit of the Lord is, there is freedom.” WHAM!  Mike and I may be trapped in some ways, but we both have the Spirit of the Lord and so we have freedom. Our spirits are free, our souls are free in Christ Jesus. This world is constantly pulling us down and trying to ensnare us. Its pull is strong and weighty. A “normal” life is so desirable. His ways are not easy and yes, I do pray that Mike will recover greatly and we’ll return to some normalcy and more earthly freedom, but we are truly free where it really matters and will be for all eternity.