My husband has dementia - so why blog?

This is my first post, though not the first time I have tried to put into words the agony of watching my husband of 48 years, slowly disappear. No he hasn't died or left me.  It's worse than that!   He has been kidnapped by +Lewy Body dementia.   I miss him, yet he is still here   There is a only a vague likeness of his physical presence left.  I think I could bare that, after all I'm not the woman he married either, but there is one huge difference - his logical, cognitive thinking and his funny, life loving personality is almost gone.  No!  It's even more than that.  He's confused and fearful.  When he speaks his voice is barely audible.  Much of the time what he says, especially to me, is filled with anger and resentment.  He struggles to regain the control of our lives that he once had and seems to resent the decisions or plan that I make.  As a result, our relationship is damaged and that's the hardest part.  I want to love him and cherish every day we have left, but when his anger takes over it stirs the resentment I feel and on it goes.  His behavior is strange and impossible to explain.  He's here for a second or two or even an hour or a day.  Physical fatigue happens quickly and strength for the day is rarely regained.  Sleep doesn't help because it leaves him dazed and unable to walk or even eat.  It may be the middle of the day, with no drug or alcohol in his system and suddenly I am sharing my life with a stranger who seems to be in a drug or alcohol induced stupor.  (I have read and research this behavior and it can be related to a REM sleep disorder, and understanding is helpful!)

Flashback fifty or years to my early teen years.  I was thirteen or fourteen and my parents were going through a terrible time in their marriage.   My step-father was an alcoholic and was very abusive to my mother, my brother and me.  My mother struggled with alcohol addiction to, and she soon began to drink even more.  Drowning their troubles and neglecting us became the daily routine.  With the drinking came the violence and abuse.  Drinking, fighting and then passing out was the routine for every evening and most of the time the night ended, for me only after putting them to bed and cleaning the messes they had made.  I assumed the role of parent for them and my younger brother and myself.  Yes, I resented it! Yes, my grades fell! Yes, I was alone and isolated and struggling!  I longed for the "normal" life enjoy by my friends. 

Fast forward fifty years, and my life has come full circle.  This time it's caring for a husband, alone and confused, again.  Sad and mourning, but no time for crying.  Often more than I can handle, but handling it anyway.  Care for him, care for home; no time for care of me.  Look back again to1960 - trying to respect and obey people whose personalities would change drastically from one drink to the next.  Orders were given and then forgotten only to be remembered the next day.  Again fast forward to 2013 - seeing identical behavior, but now a husband ravaged by a mind and body stealing disease instead of parents ravaged by addictions.  Hating the disease which steals his reasoning. Trying to remain sane while he vacillates between sanity and insanity. He may tell me one thing that makes complete sense only to forget what was said or change it later.  All the symptoms are so similar.  He staggers.  They staggered.  For me, two roles played out of sync.  A child parenting the parents or a wife leading the home = pain, self-doubt, frustration, loneliness, isolation, fear and sadness.  Every day he fades a little more while I frantically search for a way to hold on to what is left.  I spend my days serving him as he desperately fights to keep his ability to serve himself.  Most of the time he believes he is able to do all the things he has always done.  The daunting cruelty of the disease is that while it slowly eats away at your cognitive capability, your mind tells you and everyone around you that everything is still the same. 

So what do I hope to gain by writing a this blog?  I can't say for sure. Perhaps to vent or find some understanding or help someone.  Reaching out of my pain to others.  Sharing my faith in God and pointing others to Him.  Company?  My mother used to say "misery loves company.  If that is true, I have found company in an LBD spouses online support group and another blog entitled +"Living with a Thief named Lewy Body dementia."  At last, someone who understands and is offering insight.  Their story is very similar to ours.  It is my nature to encourage and exhort others.  Writing down our ups and downs is a positive thing in the midst of so much that is negative.  Speaking and sharing with others will keep me reaching and stretching to cope.  It's my hope that I as I write, something said here will encourage someone else.  Paying it forward, if you will.

Most importantly, I want to share the impact that my faith in Christ has made.  At the beginning of our journey I was bending over to put on husband's sock and shoes.  The bending was hurting my back and I was complaining within myself until I heard a voice whisper, "I tell you the truth, when you did it unto the least of these you where doing it unto me." Matthew 25:40.  Just that one verse from scripture given at precisely the right time, changed my entire outlook.  I believe in the power of  God's word.  I literally believe that God lives in his Word and that faith in what he says can completely change or impact physical and mental health.  Romans 8:28 is a anoher great example of that power: "And we know  that God causes everything to work together for the good of those that love God and are called according to his purpose for them."  Moreover, God's Word can be compared to a doctor's prescription for an infection or other malady.  If I take the prescription as directed as long as directed I will begin to see a difference in my physical health.  Likewise, if I apply God's truth to my spirit no matter the condition of my physical body, my spirit will grow in healing and strength.  Think about it!