Us... Disability, Dementia, Alzheimer's & Me...
You are getting older and your memory is on the decline, you ask me a question three or four different times within an hour. It is very frustrating to say the least. Any normal functioning mind would question, "Why do you keep asking, like you don't believe me, are you trying to catch me in a lie"? There were days that we would go out for coffee, and we would talk about men, we would talk about the children and the best ideas for raising them, we would talk about work, where to find the best deals, and the newest styles in fashion. You could even talk about your philosophies about life. I feel so bad because there isn't really anything we can talk about together anymore. Your mind is grasping at any knowledge that it retains just so you can inadvertently convince yourself that you haven't lost all your marbles. I sit and listen as all you can talk about is your memories of the family. It is so very repetitious, and sometimes very boring, but at least I know you are still remembering me. I dread the day may come that you will not remember me at all as people can live for years with dementia without ever developing Alzheimer's.
At times when I come to help care for you, you yell at me, and tell me that I do not have to, you say," I am not an incompetent"! Such a strong willed woman you are, and I imagine when you are alone you cry because of the dissatisfaction with life, though you will never be one to admit it. In your younger years you lived with such passion and grace, you never dwelt on your own personal problems and you lived life for what you thought it was, to be lived and celebrated, taking it by the hands dancing with it and living it to the fullest. You were the one that took care of a lot of others in your current situation, as you were a nurse, as well as a mother. I bet you there is a huge difference between caring for someone with dementia always trying to figure out what is going on in their minds, and being one with dementia, if you only knew how to piece it together, I could imagine that you would say if I knew then what I know now things would've been very different for people's lives that I cared for.
Mom and Dad are scared, as the typical mental decline of aging is becoming more present in their lives, though they deny. They have a lot on their plates, helping to care for you, and they worry about who is going to take care of me in my state. Worried and scared to let go, they run and hide struggling with the terms that they must come to for in a few years this will be me. I understand the anger and frustration, that it isn't as real as it appears. It's like a voice locked away in a dark hole screaming for help, disappointed that this is what life has become. Not anger at all but a deep yearning and LOVE. Love to help yourself, love to help me, love to have someone hear you, to understand what you need. "WHY CAN'T YOU HEAR ME"?, clambering from the inside. You are scared. I get it! Only because I have lived it. Welcome to the Disability Epidemic! None of us were prepared . Even you, having been a nurse, all of the education was not there. However I have faith, a very strong faith in humanity, as well as life, the cycle of life, beyond any reasoning or that of any human understanding that everything will work out right according to GODS will. For now rest assured, that I am here for you, and that I will always LOVE you.
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When Love Is Enough...
A very big challenge is being in a relationship with you. I am certain that I can wager, that anyone standing on the outside looking in will say that is not normal, and probably question, How can you do it? Don't you want success, Don't you want money, Don't you want to have a chance at anything? I simply answer, as compared to what? Being in a normal relationship, where the other partner will more than likely only be in the relationship for themselves, to profit for themselves to be the liar and the one that will rape you in the end for everything? People that will take your dignity, your pride, and everything that you worked so hard to build together? I for one know that being in this relationship that you view as not normal; this person I am with makes everything about work, relationship, love, family, and commitment a big part of who they are. It's all about life for them and living it to the fullest. It's effort ,it's genuine. Yes there are some really huge bumps, but the way I see it, is you are not living if there are not any bumps, that the two of you can smooth out together.
In a normal relationship you achieve your comfort level with each other, and everything flows normally, and peacefully. For an adventurous type person that becomes boring, and that is where the trouble starts. You start going places all the time by yourself, you bicker during dinner, and instead of speaking well about each other, you'll find yourself cutting your partner down. That is not love.
Love is having the strength, respect, and courage to state to your partner, what is wrong, and talking about ways to fix it. It is about valuing yourself and your opinion, as well as having been given the opportunity to have faith in yourself. It is about embracing one another's differences and growing with them. Add this all up and it equals happiness to see one another every day. It definitely is not about not getting flowers on mother's day or valentine's day, it isn't about all the materialistic things that you do not get. Love and relationship is not the end of everything,it is not the eternal peace as everyone believes it to be. It isn't settling down. It is wars to be fought and fires to be danced through, by each others side. Coming out victorious, with the person that represents everything you have ever loved in your life. To those on the outside our relationship may not appear to be normal, because it is very painful most of the time, and very sporadic, but I wouldn't want it any other way. This is when Love is Enough!
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How do I love thee?
On occasions upon waking in the morning… you are such a chatter box, and I not being able to function mentally for at least a couple of hours yet, smile because I understand what you are going through. I am reassured that the world is not perfect and therefore can move forward with my day with confidence, knowing that your inspiration has loaned to my voice the strength to speak on yours as well as many others behalf’s.
You are in and out throughout the day addressing so many topics and sometimes angry with me… and I don’t know why. The first thing I realize is that you are not intentionally trying to direct your frustrations towards me… I look at you questionably, tenderly; I smile, apologize, and then continue with my work. I can never disregard you, your feelings and thoughts. As they are very important, however what I can do is help you rationalize, understand, and learn how to redirect at a later time. It is most important to value you as a person first. I care about you very much, and I understand that to keep you moving forward it is important to keep inspiring you to love and accept yourself as much as I do. This will bring you much success as time goes by.
You drive me batty with your constant focus and conversations about politics, foreign politics, your hobby and money; you speak as if those things were the only things that make the world go around. I being the one that genuinely believe in John Lennon’s words, “ all you need is love”, my focus is generally directed outwardly more towards humanity and education. My views on politics are that it is only a small sect, (percentage of the world) just as politicians love to keep it, (so that they may rule the world) however I believe that there is something much bigger and more important out there, and that is the people that have to live in this world; that make it go around. What has society learned from politics? An inward focus, greed, and hatred for one another and laziness… Though you and I both agree that society has become to dependent on the government, that in a systematic crash, people wouldn’t know what to do. There would be mass rioting. The point is whether or not what I write is the truth. Whether or not if I believe that the world would be better off without government or with government, or even how much I go crazy by discussing those things with you. No matter how much our relationship may seem to be odd. We are choosing to embrace each other for our differences. For it is what makes us both stronger. I have learned over time that it’s not what you get out of a relationship, but it is what you bring to it. To enhance one another's life.You are different everyday, a true inspiration to me. I don’t expect much but I am given everything through every educational experience we share together. I love you for every smile, every tear, and every mistake. I love you for being forward, I love you for being backwards, I love you for being blunt, brash and cold. I love you for being factual and in my heart you will always be accepted. I to await the day that society as a whole will accept you as well.
From the writers of Brain Injury Productions:
Edited by Bethany Bromley
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