Chapter Ten:Burnt Passages of the Caregiver

Burnt Passages.

       Memories of younger days are slowing burning away with each sunrise.  Those passages of time become burnt beyond recognition in our minds. Nothing can restore it and that makes me extremely angry.  It is ironic how we can be angry at a disease that we cannot touch.  Each day more of me also burns away with each breath I take.  My inner self is raging with a fire as hot as the Sum because I cannot stop the dissolving of your mind. This chapter is more about me then it is about you but that is okay because I need to express this part of the journey through my own eyes.

    In a blink of an eye I find myself walking in 2016 with paths that no one ever imagines they would be walking.  Here I am trying to keep my balance but I am severely failing and find myself on the burnt ashes covering the ground.  Yet if you were to ask me if I regret being here then you might be surprised at what my answer would be, my answer is a no, I do not regret being here.  It should not surprise those who know me because my love will always squash regret.  Your words, 'I didn't make any sacrifice's your Mom did,' hit me hard because you made them also.  I was not raised by Mom alone you were there by her side through good and bad times. You made the sacrifice's you were not even aware of and for that I am thankful.  However,67 I truly wish that we could have been the kind of Father and Daughter that was not an nb  oil and water relationship.  I could have done more to bring you closer to me but I did keep you at arms length and now our chance to become closer is lost forever.  That is the regret I have and shall always carry until my own times comes to a end.  When I was a child adults were not that difficult for me to figure out because I never really thought or felt like I was a child which made our relationship hard to build.  I now know that it wasn't a matter of me feeling like a child or adult but that I simply could see through other people's masks.  I wasn't allowed to fall for the masks we wear around others in order to protect whatever it is we want to protect.  People called me arrogant because of it but how was I supposed to know that normal humans could not sense another's emotions or thoughts.  Imagine finding out that you are more weirder then what your fellow classmates thought you were.  It was a eye opener and that was one reason I began to withdraw from them and you.  As time went on those memories became my own burnt passages of my life.

       Last year we lost Uncle Monte to Alzheimer's and five years ago we lost Grandma to it which made me feel like we were being kicked in the teeth.  This disease took them away for years before their last breaths.  I wonder if other people can truly know what it is like watching someone with a dementia disease every day.  I doubt it and the medical profession only knows the scientific's behind the disease unless they have taken care of a loved one they cannot understand the true nature of the disease.  Even though we went through this with Grandma I am finding it is different from hers.  I guess that is because you are not Grandma and you are much worse then she was.

     Months have gone by since I started this chapter and your mind at times doesn't recognize me as your Daughter anymore.  The realization has hit me hard that my head finally accepts that we will no longer be able to mend a broken bond that we never had or tried to make.  As I sit by your side thoughts of what could have been run like a ravaging river taking your memories with it.  You keep asking me questions that you would ask someone you just met and yet you have known me for 49 years of my life.  You gave me life and saw me come into this world but now it is like I'm either a stranger or someone else you know.  How can this be?

     I look at you to see a child like man sitting there and I wonder where the strong father that I looked up to went.  I guess we all grow up thinking how strong our Fathers are and that it won't ever change.  You are a mere shell now with small memories peaking through here and there but only for a small brief moment.  Now I'm someone who you would see when you went back to Michigan for the summers.  Where is the memory of me gone?  It appears that the memory of your second Daughter is gone forever which breaks my heart and making my job as your caregiver harder.

    The path of a caregiver for someone with dementia or Alzheimer's is a rough road to walk and you will be tested to the point you want to walk away.  You are in your chair fast asleep and I'm am saying softly to let it all go but yet part of my heart feels it more for my sake then yours.  I want you to be free from a mind that is not allowing you to be who you once were.  But I still struggle if my wanting your release is for you or myself.  I want to believe that it is for you more then myself but I cannot help but feel it is more for me.  I feel you should be released from this awful disease because I feel we should not keep seeing you disappear more and more each day.

     On September 29th you had your 78th birthday and most people wouldn't be thankful for a birthday especially a good birthday like you had.  I am grateful that your day went well and even though you insisted that you were 77 everything else was a good day for you.  We all live our lives without thinking that someday we too may have to have another be our memory.  If only you could have been allowed to keep your own memory in tact.  But you were not and even though that makes it harder on us we shall not abandon you because we love you.  Many would abandon a loved one to a nursing home or just never see you again but for us as long as we can care for you we shall.  We care for you not because we are a Wife, Daughters, and Son we do it because our love for you is stronger then what life as dealt us.  We may not have always been close but I never once stopped loving you and that won't change even long after I am gone.

     The end of this story has yet to be written but it won't end with your death because many of families will have someone who has Alzheimer's, dementia, and Parkinson's.  They will continue this journey of a caregiver and many will face the same things we did with you.  The Story of dementia will go on until the day comes when we have a cure for it other then death.  Even though the path of a caregiver is a hard one you will have many fellow caregivers walking by your side fighting against the disease that is talking their  loved one.  Doesn't matter what disease or if you are a caregiver that is related by blood or not because those who are caregivers give a gift no other can give.  Caregiver gives the gift of unconditional love, support, and is willing to become the keeper of your memories.  That is what I have become and I'm  glad that I will keep those memories alive as long as I am allowed to.  I didn't choose this path but neither did you Dad and I thank you for giving the gift of my life despite our not being close part of you knows I love you but you'll never know just how much I do love you.  When you are released life will go on for me and your memory will live on through our family and the words I have scattered among the winds of time.
l

   

Chapter Nine: False accusations

False accusations!

     November 10, 2015 our phone rang out and life as we knew it changed again in the blink of an eye.  We learned someone (unidentified) made a report to adult service's accusing me, my Mother, and Brother of abusing my Father.  I was angry, upset, and bewildered at why would someone accuse us of doing harm to our loved one.  In honesty I can tell you that my Father and I have never had a good relationship but it isn’t one that would warrant me doing physical or verbal abuse to him.  Abusing someone makes me sick to my stomach and anyone who does abuse another should be placed in a jail cell.  They are not someone I want to be nor do I condone any family member who does commit abuse.  I am more then willing to turn them into police if they ever commit abuse of any kind.  My Father doesn't deserve to be treated like that and there are times I hate accidentally treating him like a child because of the dementia.  I hate how cruel others can be and I have done cruel things in my life.  Nevertheless, I don't anymore because the person I was then isn’t the person I am now.

          When Grandma started accusing me of things that were untrue and told stories that could have been true or not.  I won't ever know because she herself was unable to know what memory was false or true.  It hurt but my reaction to her false accusations was that I knew it wasn’t her  making the accusation.   A new person took over because the mind was losing the old one.  When she first accused me of lying I thought what in the world has gotten into you Grandma?  I did not know that was a sign of the storm yet to come but we hardly ever do see the storm coming our way.  In truth it was not what I wanted to experience or see that happen to someone who means a lot to me.  She encouraged me when I could not give myself that encouragement and the same with faith that I could do anything that I put my mind too.  Looking back, I think she could see that I was indeed my own worse enemy.  Unfortunately I am still very much my own worst enemy today and I'm not proud of that fact.  I sit here day after day trying to escape the reality that is going on only a few feet away from me.  But reality always comes along and says, 'you aren’t going to escape me for I have embraced your soul.'  'You whisper, ‘reality I wish you would go away, go away and never return.'  But that isn't the answer either because no matter how much you want to run from it, it is always waiting for you.

     I wonder if people truly realize just how much harm their words cause or even care if their actions cause harm.  I don't think many people do care these days and that is sad because the new generation is going to really be a cruel one.  We are already showing signs of a world where its humanity is slowing crumbling into ash.  This world is like dementia slowly crumbling away what we know without people noticing at first until we no longer can ignore the signs of it.  My Father never wanted to fight dementia nor did my Grandmother but that is where they found themselves at.  We can stop the deterioration of our world through changing the negative cruel words and actions.  The person who reported us may have thought what they were doing was for the best for my Father.  But they should have asked around to see if there was true evidence or just the mind of a person with dementia.  I hate how we just place a stereotype label upon someone without getting to know the truth.  This is the world we live but I am hoping through this blog to make small changes in my own world and I hope a light shines exposing the darkness.

     It has now been six months later and one simple piece of paper saying the case was dropped has yet to make its appearance.  The social workers said it would not take too long for a paper to come in the mail saying the case is closed but here we are still waiting on one piece of paper.  Until then I am going to be on my toes and try to protect my family as much as I can.  Dementia is taking my Father each day and I don't want the state coming in to take his physical being away either.  We suffered enough and now we must do what we can to be there for my Father.  Walking by each other's side through the rough times and the smooth times because that is what this family does.

Love & Light.

Chapter Eight: Brother's release..

Brothers in life and death.

  You were given three Brothers and one Sister in life.  You are the second child, second Son, and the one whom became my Father.  Now we have learned of your younger brother's possible passing.  I wonder just how much it is affecting you right now.  Can your mind wrap its self around the knowledge he may leave us before you do?

      October 31, 2015 he left you behind to struggle with the remnants of a shattering mind.  Do you mourn the loss of him?  I wish you could tell me how you feel because right now I cannot tell if you feel anything.  That isn't anything new because when your Father passed away you didn't express any emotions at all.  I haven't really cried for Uncle Monte yet but I think that is because I know his mind is again whole.  I desperately want yours to be that way too but the only way for that to happen is your DEATH.    Why does it have to be death that makes you whole again?  Why can't we find the cure tomorrow?  Why do dementia and Alzheimer's have to exist?  These are questions that no one can answer which makes my heart breaks into a thousand pieces.

   Memories of you two growing up are slowly fading your mind and mine of growing up with you as my Father.  Why is it I wasted so much time not building a close relationship with you?  It is too late now for the sands have slipped down into the abyss of our hourglass.  In a blink of an eye 48 years have passed us by without either wanting to repair this broken bridge of ours.  You and Uncle Monte were two of a kind that no one can replace.  Each time you two got together you both had to be right about every subject matter and the rest wanted to run away but we didn't.  We are going to miss those discussions and it won't be just because Uncle Monte is gone but part of you is already gone too.


     April 29th was Uncle Monte’s birthday and my Father thankfully didn’t ask my Mother to call him to wish him a Happy Birthday.  One thing about dementia is that you lose track of which day it is because you stopped wanting to know if today is the 1rst or 31rst.  I wished him a Happy Birthday as I do my late Grandparents because for me that is a way to say I love you and celebrate the life that had here on Earth.  I shall continue walking on Earth a while longer while trying to keep the memory of loved ones alive for as long as I take breath.  I love you Uncle Monte and I know you’ll soon see your Brother again but until then know we are taking good care of him.  Cherish them, you, and all of life even the bad patches of roads you walk for they make up who you are.  

Love & Light.