Skip to main content

Living in a Constant state of confusion

    We Lived in town for about 12 years before we moved to the farm. With a Dysonia patient, or my kind of Dystonia I live in a constant state of confusion, constantly having to ask what day it is, or where is the silverware, towels, plates, for me one of the toughest parts of the disease is that if something has been placed somewhere the first time, that is where you always go to find it.
    When we moved to the farm I was still working so my wife had to so show me where she put everything in the cabinets in the Kitchen and bathroom which dresser was mine, because you have to change everything when you move right?..
    We have lived at this farm for almost 10 years and she has moved things around 3 or 4 times since we have been here, but when I want a knife I go to the same place that she put it when we moved in and wonder why it is not there. I do not remember her moving it even though she has told me hundreds of times. I have to sit and think, ok where did she move it?  I think for awhile and then a light bulb goes off in my head and I remember where she has put them, only to find when I get there the towels are there. Was I looking for towels? by the time I get to the second place I can't remember that I was looking for a knife to begin with! Sounds like a comedy show, Well sometimes my life is a comedy show it is either you learn to laugh or you will spend all of your time crying, and any of my siblings or my mother can tell you that you have to learn  to laugh at yourself to make it through because believe me others will laugh at you and that is ok. I then must ask my wife what I was looking for, even though she wasn't even in the kitchen when I started to look for the object I can't remember.  She will come and look around, assess the situation, what does he have on the counter, what was he doing when he started looking for this object? and somehow miraculously she will bring me a knife and tell me what I was looking for and she will know what I was going to do with it. It still amazes me. For a Dystonia patient if something is put someplace first, that is the place it should always be, or that is the way it is for me. I live in a constant state of confusion she may find me almost anywhere just standing looking around, I do not know what I am doing there sometimes she does sometimes she does not, but she is always compassionate and even if she does not know why I was standing there she will say, "Just sit down in the recliner and we will figure it out." yes she gets frustrated but who wouldn't with a husband who never knows from minute to minute what he is doing, and I can see the frustration, but it is not with me it is with the disease.
    This is a good lesson for any care giver or one who is cared for. Let the Person know that it is the disease that frustrates them not you. They do not like seeing you confused, and for the one who is being cared for if someone really loves you, yes they will get frustrated, but understand it is the disease at which they are frustrated cut them some slack. I am not the easiest person to take care of if I had to take care of me and my confusion I might have quit already!
    My wife has a right to get frustrated and if you think about it we all get frustrated about something usually it is not a spouse we have to worry about.
    Again these are just thoughts from a family with Dystonia confusion is just one of the problems if you enjoy the story you can click the follow button at the top right or you can subscribe if you read it thank you! I appreciate the time you took to read it and some of the thoughts and struggles we face that you might not think of, anyway it will give you pause to take a moment and pray for a struggling family! because believe me it is a Struggle!
 

Comments

  1. So you do this too? Didn’t know. It’s why I cannot move anything...and if I do-Abby has to find it. I haven’t moved hardly anything since we moved in for that very reason. ...and as an added bonus that I know occurs to you too...English sometimes sounds like a foreign language! That’s always fun...or funny! 😊 Strange lives we lead, but it is much easier to handle them if we laugh! 😆😁 Luv u!

    ReplyDelete

Post a Comment

Popular posts from this blog

Living with Dystonia My Story. Follow me on my Journey for a cure

My Life With Dystonia It was about Ten years ago, My sister was going through a Hard time with this disease. I did not understand it. For some reason we don't take up a cause until we are affected by it. She had undergone DBS surgery you can read more about that from the Link. 
  She began to have Dystonic Storms, Link to what one Looks like to come later, I would take care of her it was a tough Job, but even tougher for her. I never dreamed I would later have the same disease. There will be more to come financial struggles, and yes there will be some triumph. I Just want to take you on this journey with me. this is a Terrible Disease it affects the whole family. Please this may be boring at first, but will you follow the Journey  

My Life With Dystonia These First few writings, or musings, I guess some would call them are going to be about My Daily life Some of the Struggles that People around do not Even realize we have. Close Friends do not Understand the Daily Struggle.     I was Working at Pioneer telephone and was a Network Technician. The Job was not always fun, But it was better than not having one at all. I was close to getting My CCENT for the techies out there they know what that it but just to say it would have meant very Much to me to get it. I was much like everyone else, but after work I noticed I was exhausted. It was normal at first, I thought, everyone was tired after work Right? Then I began to notice what my fellow employees could do after work. It was amazing to me and I began to wonder. at sixteen years old my sister Got the Disease, but she could handle it better, she was more equipped. I was a man who had to support my family. So I continued. Ignoring the signs of the Disease. Thinking i…

Springtime in "Tornado Alley"

Springtime in "Tornado Alley" Spring time in, "Tornado Alley as it is called, is not a particularly great time for those who suffer from my type of dystonia. The Electricity in the atmosphere can drive the electrical signals in your brain crazy. This will be a short post. Well, because of storms and electricity in the air. It is very hard to concentrate during these times.   My wife and I used to sit out on the porch and enjoy these "Lightning Shows" together, While we where rearing our six children, and it was a getaway for us after the children had gone to bed. That time is long past even lightening 10-20 miles away can cause a Dystonic Storms.., Like today. We have since moved into a house with a basement which helps,
and I can wear Puma hats because of some material in them that helps a little as well, But after awhile you get it feels like kind of a prison when you have on day to a week like these. It is hard on my wife as well because she is constantly ru…