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.

Chapter Seven:Loss of time!

Losing time.

     One day you were in the same time as we were but then suddenly your time was off kilter from ours  separating us from each other.  I keep searching to see if we cannot find the same path  again but alas that which has a hold of your mind will not allow it.  I scream in a hateful tone how much this is so unfair.  I hate, hate, hate, and that hate can devour my very soul.  I do not want to feel hate for something I cannot touch with my hand.  How do you fight something only seen through an autopsy?  You cannot until we advance the field of science that is trying to find a cure for this horrid disease.  I want to take it in my hands and rip it to shreds as it has ripped my life into tiny pieces of chaos.  My Grandmother had this and now my Uncle and Father are its latest victims.  How come?  Why them?  WHY?  That is one word I hate and I know that I have stated that before but my hatred for the word why is growing.  Each time we lose a piece of him is more time stolen away from us that can never be recaptured.

     I barely remember how you used to be now because the time has been erased from my own mind because the new you have rewritten its self.  Time goes on leaving our imprints behind but they are fading with each step I take by your side.  Why am I losing time too?  Why does anyone have to lose time at all?  It stinks, stinks, and I want to be rid of this stench.  My tears have flowed so much in the past that they no longer are able to be released.  I'm worn like old pages of a book from a hundred years ago that time has not been kind too.  Perhaps it was not time that wasn't kind but the keeper of the book itself.  I as my own keeper have not been too kind not only to myself but to you, Father.  Is that why we are walking a path where you are losing time of yourself?  I thought all the tears were dried up and gone for good but as I sit here typing this those tears are flowing without signs of stopping.  Why?  Why?  I so want to scream until I no longer have a voice but I again corked that up.

     Do you remember when you first saw Mom?  Do you remember what went through your mind as you look up the face of your future wife?  Those are precious memories that I can never have about someone in my life because I shall never have the kind of love you both have for each other.  It is tragic that you are losing those memories.  Once gone they can never be found again and we are left without the thread to tie the past to what is yet to come.  We are walking but your steps are falling ever more behind although I have slowed my own.  Where will this path lead?  Only one place will this path lead and that is your death along with our sorrow of grief.  Why must we slowly lose you to a disease we cannot see, cannot understand, and cannot kill?  I want this disease dead forever but that won't happen in time to regain the person we are losing each day to this horrific disease.

     Slipping through the hands of time, are the memories that can never be recovered and even I am forgetting the memories of how you used to be.  Yesterday you tried to take a shower on your own but ended up falling out of the shower.  Thankfully you did not hurt yourself but my anger rose because in my heart I want you able to take a simple shower on your own.  Doing simple things is something we take advantage of until we lose the ability to do them.  I never thought that I would want you to be able to do those simple things again.  This disease took more then your memories, personality, and comprehension it took away the function of your body too.  Are you living the life you want to live?  Part of me feels that if it were me I would say, no, you are not.  How did we get here?  Can we move on from here?  Only time will tell me or not.  Life is a story we write with each breath we take and new story lines await us upon the blank pages of tomorrow.  Tomorrow we will write another piece of our story and even when you leave this world we will continue to write our story with you in it.  You are a part of our story and always will be the Father, husband, Son, and Brother we all love.  Nothing will erase that from our stories not even Alzheimer's, Dementia, or Death.

Chapter Six:Home coming!

Going home again.

     A few months have passed since we brought Dad home and that was a surprising yet strange day for me at least.  Now begins our new journey that will lead me to either actually ending up in a padded cell or wishing I were in one.  Yeah, I said that same thing twice basically there but you know what is hard to see someone you care about not remember how to work simple things he's worked for twenty years and that part scares you for two reasons.  One reason is the realization his getting worse without any hope of getting better, two is that you see just how easily you can end up upon the same path as him.

     I never thought he would admit to being a burden on us and that he should have stayed in the nursing home/rehab facility.  When did things start going backwards?  How come I can not reverse  things to make them how they used to be?  Because the law of physic's says so and that stinks.  My Father and I may not have ever truly gotten along very well but that doesn't mean that I wished something like this to attack him.  It is a full blown attack upon him taking us as victims too.

     Words flow through the pages of time lasting longer than a single breath escaping thou lips.  A memory shatters when the words become broken upon the surface of our minds eye.  My heart skips a beat while trying to hold back a flood of tears.  How much more of this path can I take?  I don't know but I won't give up nor shall I leave you alone with this.  I hate thinking you should never have come home to us because you would be better off crossing over to the other side.  To be free from this disease would be wonderful but that isn't going to happen in my lifetime nor yours sadly.  Why do we walk these awful roads?  I shall never know because I am not meant to know the answer to that question right now.  How is it that we find ourselves seeking what is out of our reach?  I want to reach the unknown world and grab the cure for you and for Mom.  She has her husbands body home but his mind is never going to return to her as it once was.  It is hard breaking knowing that you both have been together for 53 years now and she is celebrating a anniversary you cannot remember.  I want to give her the best present ever which is a fully restored husband but I can only stand by her and your side as we continue to walk this path.

Chapter Five:State of Delusions.

Road of Delusions.

    The phone rings and Mother answers it to hear my Father's voice but it is not going to be a pleasant conversation I was to find out after she hangs up with tears following down her cheeks.  My Father called to say, 'I'm alive and I mean literally we had some bombs go off and someone is trying to kill me.'  My Father whom is a rehab facility is recovering from a shatter femur bone near the hip.  My mind went into overdrive mode and then crashed into the wall of despair for which I have been finding myself running into allot these days.  How can this be happening?  Simple, it is.  Why?  There is no answer for that and I'm trying to understand that there never will be a true answer to why.  A hard life or easy one is always filled with both good and bad in it because no one is immune but when you feel that life is always a hard one you want to have a time when it becomes a bit easier.  I'm not asking for a life that is fully without pain nor one with all pain just one that is easier for me to deal with.  But the world of delusions is not just the road my father is taking but one I am taking as well.

     I have been on a road of depression all my life and that can lead you down roads of self delusion along with feeling so lost that no one wants to find you.  I wonder if Father is feeling lost and alone even though we visit him along with making sure we say we love.  Well I should say my Mother does because I cannot say I love you Dad which makes me feel like a bad Daughter.  I'm told that it doesn't make me one but how can I say I love my Father to everyone else but him and not be a bad Daughter?  I don't think you can and yet I find myself wondering why it is that I cannot say those simple words to him.  Those precious words he's heard from my Sister that he cannot hear from me must hurt him deeply.  How does one whom hurt their loving parent be a good child?  I'm not a good person all the time and most would tell you that is a lie but the lie is the one I portray to others which is a skill I had learned long ago from people whom turned my world of trust into millions of broken piece's.  Ever since then my trust has never been fully restored nor will it be and it is my belief that is shouldn't be because if it were my trust won't be the same as it once was due changing in me.

      It started out so subtle that you chalk it up to just getting older but then it shows its head more and more until you no longer can ignore it.  Your loved one is now walking the road of dementia that can lead to Alzheimer's or other disease of the mind.  I first was exposed with my Grandmother whom on January 21, 2011 we lost her to Alzheimer's and part of me was grateful she passed still knowing the man she loved and was married to for 63 1/2 years.  Most would not say that is something to be happy about but for me I'm very grateful she never forgot him or my Mom.  Remembering someone you love is a precious gift that not all of us see until ti is too late.  I don't want it to be too late for us but it is too late for us to form a better relationship as Father and Daughter which is partly my own fault because I didn't try to repair this relationship sooner.  We tend to think we always have plenty of time to make things right but in truth we don't for not only can death come at any moment so can the disease of the mind.

     Time slips through your fingers like fine sand but that is never ending unlike our lives on Earth.  We can only take each day and live that day with those you love for you never truly know what will take that person away from you.  When one's mind starts fading they begin to slowly leave you and then before you know it and then one regrets not saying what they should have said years prior.  Saying what you need to say to someone can allow you to not face a regret that can never be corrected which is what I face with my Father.  We walked along side each other yet we were on different paths that seemed to never quite connect us to each other like it did for my siblings.  So if you have the opportunity to tell someone what you need them to hear just do it whether they appreciate it or not you have released it for the universe to take in.
   

Chapter Four:Fading away from me.

Slowly fading.

     A week ago my life once again shattered as my Father took a fall that normally would be nothing for most people but for him it took a lot out of his body and soul.  We had Mom in the hospital for three days and a rehab a week getting a IV antibiotic for her legs but she was not as bad as Dad.  My Father broke his hip and they had to replace it but he's not really woke up long enough to hold a conversation with and that is scary for all of us.  He's fading away before our eyes and on top of this other things have come to light.

     Today we found out my Uncle is now in the final stages of Alzheimer's which makes life more dark for those around us.  It means his life too is about to end and my feelings are that I will either lose my Father first or Uncle first but both within a short time of each other.  Not something I want to feel and yes, I want to fade away myself instead of watching them fade.

     We saw Father today and it was emotional trainwreck for Mom but I on other hand really didn't react to it all and I wonder if it due to the lack of a strong bond between him and I.  He called home saying they were releasing him and sad things was they were not until his kidney infection is cleared and he can put weight on the leg.  I wish I could cry that way it would show some signs of my love for him.  I do truly love him but there is a part of me that wonders if I feel that love Father's and Daughter's have for each other.  It is that I mourn the loss of?  The chance to have the warm loving bond one should have with a parent.  I honestly cannot say because I know that not all parents are loving one's and like any human being can take the life of their child as easily as the child can that of the parent.  Which one logical conclusion for me is that being related by blood doesn't mean you'll always have that bond that will never do you harm.

     Last night or should say early this morning I came to realize the maybe I mourn the loss of not ever being able to get close to him now that it can never happen.  Isn't it strange what people will mourn for and I mean for the things that are not living but for the things we wanted in life.  We don't always get what we want and it is often unfair but I cannot help but feel that is a punishment for something that I did.  I do not know what it was that I did to deserve this punishment but if I knew what it was I would try my best to make things right.  But how can you do that when they are fading away each day with each breath you take?  Answer, you cannot but just take it one day at a time and be grateful they are a part of you and always will be no matter how much time passes and what happens in life.