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Expert Blog

Getting on Track

August 12, 2015

I want to die. Really. I just want my whole world, as I know it right now to disappear.

I am overwhelmed with paperwork. I am lonely. I am tired. I am sad. But I can’t. I can’t disappear. I have too many people counting on me. I have too much fire inside of me. Only that fire sometimes turns into smoldering ash as I have days when I am unable to perform the simplest task (notice that isn’t a plural.) Then I find myself ashamed and disgusted with myself. It is so difficult to see past the hurt, anger and frustrations that have evolved from sporadically appearing in my life to becoming imbedded into my very core.

Some will be worried about my state of mind by my first statement. Not to worry. I am not going to kill myself. I don’t really want to DIE. I know the difference. I want to be done with my current life. My current predicament. My current heartache, worry and burdens.

I am in the middle of trying to get approved for Medicaid and VA help. I am watching Jim become a completely lost soul; someone who cannot figure out a simple task to occupy himself and since I am too engrossed in paperwork or phone calls or decisions to help him, I can add guilt to my growing list of emotional baggage I carry with me everywhere I go.

I find very little time to sit and just focus on helping with something to stimulate him so he is left to wander the small home in which we dwell and sit idly by as he watches the rest of us with daily life. Unfortunately, I haven’t got a good solution, since there isn’t someone else to help him or help me with the tasks I have at hand. I feel like a complete and utter failure on so many levels.

I cannot find a way to be the parent I need or want to be and the caregiver Jim needs or deserves. I am constantly being torn in two different directions. And somewhere in the middle is my idea of what kind of life I would be having as a middle aged woman if he wasn’t sick.

Instead, there are no romantic dinners. No gentle caresses. No interest in my day, my wants, my desires, my worries, my….nothing. There is nothing between us that eludes to a previous relationship as husband and wife. Unfortunately, I am a natural romantic. I loved the fact Jim would send me flowers or write me notes or send me cards or massage my back and feet and take a genuine interest in ME. ME.

How selfish am I at this point to be worried about what I am losing? He is losing everything. But there are times where I feel I am losing my everything and my children are losing the better parent and a huge part of themselves. It isn’t about me. But sometimes, when I get to that low point, it is. It is about my loss. And when I think about it and I go into an even darker place, I feel the culpability and then I just want to disappear.

I don’t want to deal with the finances and the logistics and the pain of witnessing so much loss. I don’t want to think about the laundry, the yard, the schedule and the “what’s for dinner” questions. I don’t want to picture a world without Jim in it, yet I am ultimately living that life already. I just want to go away and find myself lost in another place and time. But I can’t.

I must be here, in the now, all the time. Jim needs me. Our children need me. And I suppose my higher calling of advocating for this very worthy cause needs me. I just have to get myself and our family on track. But I am not sure I will ever be on track again….not without my soulmate to guide me and help me.

Thoughts and stories from others

  1. September 8, 2015 at 01:35 pm
    Posted by Liz

    Goodness, when I read the first line of your post, I nearly broke down with relief. There is someone else out there that is in the same state of mind as myself. My situation is different, but somewhat the same. My feelings are almost identical to yours and I feel bad for having them, as the people in my life that are afflicted have it so much worse than I do, the guilt comes flooding in and I feel so selfish. But, it is a loss for all of us, a terrible, heartbreaking loss we go thru day in and day out. My thoughts are with you.
  2. August 16, 2015 at 04:09 pm
    Posted by Shirley

    Karen, Sister, Friend, Once again you have hit the nail on the head! Our journey has been almost step for step in this walk! Ours just a little ahead of you! Praying for you and Jim and the kids! Know you aren't alone in this walk! Shirley

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