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When you have OBS, as the brain begins to deteriorate and become crumbled bacon; you begin to lose the ability to discern between what is thrown at you and what is real. You become more sensitive to everything around you. You look at things so differently than a "normal" brained person might. Sometimes you are called on it and sometimes you inhale it and suffer with it. The people you live with can either become your number one enemy or your best friends. It really all depends on how perceptive they want to be, or how involved they wish to be in your illness. Some cannot deal with it and shrink away. Then that is when the person who has OBS feels the most rejected, alone and wants to shrink into a ball of nothingness. The family members often do not try to do this to their loved one, most times it is a normal reaction. Wanting to run away from their loved one's illness hoping it will go away. Sometimes, your loved ones can just be cruel. Not meaning to, I reckon, but after what I had been experiencing from my family, I sometimes wonder. I have personally been through this and see some of the similarities of my actions when I dealt with my father that I see in my own family. And as I see some other things happening, I keep questioning if I did this to my own father and if I did, may my father forgive me; as I am having a hard time forgiving myself.
It is today that I am wondering if my marriage will last, if I want it to under the current conditions. My children often say things that hurt me beyond what a mother's heart can bear. But I continue to forgive and forgive, often explaining to them how these things hurt and they sometimes reappear only to leave the wounds deeper in my mind. There are no bandages that can cover them, just like with diabetes, when you get a wound, it never really heals, it just scars. I carry many scars. When my husband corrects me, I sometimes feel like a child and being scolded in front of others is so demeaning to me. I feel like my mother has somehow influenced him. I treated him terribly the first 7 years and it is all coming back to me now. I acted like my mother, controlling, demeaning, insulting and everything was mine attitude. Now, that ugly horrible beast has come back, taking my husband's usual good natured attitude and has changed him into this person that I don't know if I can stay with. He left me for the same reasons. Lately, whether he knows it or not, he has been letting the insults fly off his tongue, lashing me, whipping me with his words. I want to cry, but my mother's words keep coming back to me, "Only babies cry." So I take it in. I have tried to tell him how it hurts and he keeps yelling at me "I'm sorry" before I can even finish what I am saying. To him, it is the end of the discussion. He becomes sharp in his voice and I know it is time to submit. I submit, because of two reasons; one... it tells us in the Bible to and the second, I really don't want him to leave again. Not truly in my heart. I promised that if he would ever come back when he left in 2000, I would stop being aggressive in my words and not argue with him to the point where he leaves.
The children are another matter. 3 children, 3 different personalities. As they should be. I am so blessed to have the children I have. Ages 21, 19 and 16 are the 3 remaining children I have. My oldest daughter, Dee-Dee, died 21 minutes after birth on 28 July 1988. She was born without a brain and had spina bifida. 2 of my children were kidnapped and were kept by their kidnappers all their lives. One I never really got back was my son James. He is my 19 year old. Anneliese I got back in 2008. Danielle is the one that is biologically Dan's and mine. We raised her somewhat together, except for the 4 years we were apart, which is a whole complicated story and one I cannot go into right now. Just know that Dan was not able to be here or contact us until things were cleared up. He left on his own, but things happened during the time he was gone that he was blamed for that he did not do and it caused us to be separated for a really long time.
Anyways, my two girls, have caused some rift for me. Saying things and doing things that shaken my whole being and make me wonder sometimes with and including what Dan has done and what my mother has done, why I am even alive. The past couple weeks have been extremely hard, as Anneliese has been in and out of the home. Going down to my mother's and things have been said between both of them to accuse me, vindict me, and well, they may as had executed me; because it would had been a whole lot easier. One plays one against the other, and I am just sitting here; minding my own business, crying over Anneliese, over my first grandchild she is carrying, wondering if she is okay, if she is going to come home or not. And mostly if I will ever see my first grandchild. Because we layed down rules, there was an argument. It lead from one thing to another. Emotions were flying everywhere. People were saying things and doing things without even thinking. Causing other people harm, even people who were not in the immediate situation. Then comes the situation with Danielle. This also kind of weaves into Anneliese's situation as well.
Being that I am on welfare because I cannot work and I cannot get SSI or SSD, I need my medical assistance. My medicines alone for one month cost $4,235.00. Obviously, I could not afford that without medical assistance. Because of the rules of Welfare, my family can only bring in a certain amount of income and if we go over that amount, I lose my medical assistance. This means that no one in my family can get a job. Without a job, they (especially the girls) cannot move on with their lives. They will not be able to provide money for themselves to go to school or get their drivers licenses or anything. It also prevents Anneliese to buy things for her unborn child or provide housing for her and boyfriend. Danielle came to me yesterday with her drivers information and wants badly to get her learners permit. She needs money to get this stuff rolling. I explained to her that since I am behind this months rent and because our bills nearly exceed our income every month, I will not have the money to provide what she needs. Comments were made that she needs to move on with her life and not sit around like the rest of us doing nothing and that there were references to her pregnant sister. Later, she remarked to her father in the car while he was taking her to school that she will not be able to move on with her life until basically one of us is dead. Anneliese has been doing her own little thing, when she was at my mother's. Demeaning my husband, and me. Saying things to her that was only to be known to this household. Danny, he has said to me in regards to the baby quilt the other day, that he knows this is for our grandson, but we should had put the money towards the car. That hurt me because that is not the only reason why I am doing this for D'ante. I am doing this, because of several reasons. It may be the only thing I will ever be able to give him from me, handmade by me, for him to know that I loved him. I may not be here to see him grow and I wanted him to have it to pass down. To know that I am not a grandmother like my mother. I wanted to be the quilting, cross stitching, baking cookies and making big meals grandma. Cross stitching helps my brain. Yes, I do the family history, play games on Pogo.com but this exercises my brain and fingers in a different way. Helping me with hand/eye coordination. Trying to keep myself well. If he felt that way, he should had said something before I bought it. BTW, I had a coupon, for 50% off of it anyways. It didn't even cost that much. How can you put a price on something I make with love or a car that I cannot pass down to D'ante. I know, he was thinking... oh what is that word.... responsiblly. Ok, a brownie point for him. Then Danielle wanted to make something for the baby. I told the girls I got 2 more coupons. Danielle and Anneliese both wanted a little something to make for D'ante. Neither children are getting any Christmas presents because I cannot afford them and this is something they wanted to do. So I took the girls out last night and Anneliese got a painting kit and Danielle chose a cross stitch birth record for D'ante. Danny was with us of course. The girls and I worked together at the table for the first time in I couldn't tell you how long. I was just beginning to come back from the hurtful words Danielle had said earlier. I had forgiven and moved on. Her Dad came up from the basement and his daughter showed him her beautiful work. It is amazing. Dad said to her "Wow, that's incredible. Amazing, that's further than she (referring and pointing to me) got and it's beautiful." I just sat there and looked at him and then looked at Danielle. I was not angry with Danielle, I was hurt by Dan. This is like the 3rd insult in a week and then today, he scolded me in front of Danielle and Caleb for feeding Reba a scrap of bread. Top all of this with a Christmas card from my mother who is in the process of evicting me for not paying the rent this month, a Christmas card saying "Happy Holidays from my home to yours. Love Mom" and then letting me know on the phone she is going to evict me if I don't have the rent by the end of the month. I can't take it anymore. Yesterday when I heard the things Danielle said, the previous weeks with Anneliese's doings and now Dan's and my mother's, I felt like the most horrible mother and wife. I do not want to continue to live like this. If this is what life is going to be like, I want out. Will I take my own life? Probably not, cause I am too chicken to die, I just pray that God will take me soon so that I can be with my Dad.
I did not write this to hurt my family in a public forum. I wrote this because there is a fine line of where I can handle things and where I cannot. I love my family unconditionally. I know I will receive a lot of flack for this, but this is my life. I believe that other people with OBS and Alzheimer's go through the same things and the same pain. They need to know they are not alone. This is reality. This is not my life everyday, but many days. I need to be heard. Please someone listen to me and share with the ones who are suffering. Let them know, they are not alone. It has been my mission that the truth be heard about this disease.
