Lewy-Body Dementia and Stolen Identity

      When Larry entered into the rabbit hole of the mixed up world of Long-term Nursing Care, he stood tall, proud, well groomed, and very strong. But as days passed into weeks, weeks into months, each day became harder than the day before. Just to see my husband slowly loose his grasp of reality, his cognition disappearing, all the while my grief grew daily and his identity I could no longer see, it was gone.  He no longer stood tall, he now stooped, became unkempt, now very weak. The pain of watching this process of dying made it difficult for me to even get up and go to the Nursing Home. It just seemed more than I could bare. Yet daily I would go to take care of Larry and see to his needs, even as it became torture for me I knew it was what he needed then.
       I would cry out to God, to return my husband.  Let me take him home with me, this is where he belongs. For this is what I needed...my lover...my companion...my friend...my spouse...we were no longer two people but one. Where Larry went, I went...or where I was Larry was.   Now WHO AM I?

Now as I watch my Strong He-man dwindle into an unrecognizable child I see stand in front of me, I still can not seem to accept the fact that Larry is leaving me and there is absolutely nothing I could do to change it. I no longer had any control of my life.        

      Oh, my God, I prayed, please heal my Larry, I need him back, release him from this horrible affliction. That is robbing not only him of his identity but mine as well. Restore to us that which dementia is stealing from us daily. Give back some of the security, we once knew and had in one another, give it back I hungrily cried, give it back. I want my life back. But the healing has yet to come. The disease grows stronger, Larry weaker. As dark as my days are now I know that I was blessed with seeing how his love for me was mighty and still is today. Will he know me tomorrow, next week, or next month? Who knows? So for now I cling to these rare glimpses of my Larry peeking out from under the darkness that shadows us daily. I asked where he wanted to sit for dinner and in his matter-of-fact way plainly stated, "In your lap!"         

      So come the days that run into weeks, and months with their numerous agitations of seemingly attacks, like swarming mosquitoes diving in for bites, these are the caregivers assaults with complaints of what Larry did or didn't do today....meals not being made to suit the residents likes or needs...one example:  Larry's meal card plainly states no pasta and no green vegetables. So one night they bring precisely this. So I went to the kitchen to get something else and was met with great resistance, because the main need was the main part of nursing home...(not the Alzheimer's unit because they are substandard and don't always eat or even remember what they like, right?) This is become one of my greatest pet-peeve! One must always be treated with dignity so with the last $25.00 in my pocket pizza was brought to feed the hungry.          

      Every day I am met with the complaints of what is going on but this is their job. The payment is great (which is another blog in itself) not mine but because things needed to be done I found I was doing their jobs and became quite welcomed.  I was spending up to 10 hrs a day there, (what else did I have to do?) But after 2 almost 3 months I knew I could not physically keep this up. Thank God for friends who kept gently coaxing me to reality. The nursing facility was capable in taking care of Larry, and when they didn't then my job was to hold them accountable. A few times had to step out in faith but all in all things seem to be easier for him (because of the decline of his mental capacity) but it has become easier for me to be home taking care of the needs of home. (I am not sure I can even call it home, for it has become so foreign to me)          

      We still are struggling to balance Larry's days with a routine he just can't grasp. For the med-techs still fight to get meds down...the wanderings into others rooms, confusion, being lost, just lost... anger at not getting out, when he has not done anything wrong...refusal to empty pockets or hand over something they didn't want him to have...rage and frustration because words don't come easy any more, so communication's difficult, paranoia for all trust is gone, except for his trust and love in me. 

it seems nothing is the same, for even our love has changed for it has grown stronger and grows ever more daily. This too is something that lets me hold on to my day to day life. Have I got balance? No. My only strength comes from my faith in God and knowing I am HIS and Christ is in me and I don't walk these halls alone.      

  

II CORINTHIANS 4 : 6 - 9

            6)    For God, who commanded the light to shine out of darkness, hath shined in our hearts,
                   to give the light of the knowledge of the glory of God in the face of Jesus Christ.
            7)    But we have the treasure in earthen vessels, that the excellency of the power may be
                   of  God, and not of us.
            8)    We are troubled on every side, yet not distressed; we are perplexed, but not in despair;
            9)    Persecuted, but not forsaken; cast down, but not destroyed;
         
                                                            Today's Prayer:

   Heavenly Father, we thank You for the opportunity to come to You, Oh, Lord God in our brokenness we ask you to bound up these wounds, and let us be made whole and complete in You oh my Father. Help us Lord when no sense can be made of what we deal with in this for certain uncertainty that daily we are facing with Dementia, that you send comfort, knowledge, compassion to all that work with our family members in the facilities of care. Help them and us to not loose patience with our loved ones. For what they need most is gentleness, love, and kindness. Fill them with Your peace and comfort that only comes from you and Lord keep each in Your protective care. Keep those with evil intent away and disable the cruelty that come against our loved ones while we are away. Go with us in our comings and goings that we walk the path You have placed us in with great blessings to know we don't walk it alone.. May we ever be mindful to glorify You in all we do. In Jesus' Name we pray Thy will be done. AMEN

Come join me for my story continues....later

Lewy - Body Dementia and It's Sucker Punch...The Beginning

      On September 22, 2014, my husband was placed in the hospital, for medication review and was never allowed to come back home.  This sucker punch made a direct hit, I didn't know if we would even or ever recuperate. Then the rapid descent into, confusion, fear, grief, sorrow, anger, frustration, paranoia, bitterness...the emotions were just too innumerable, all began. 

      As we entered in this unknown territory with great fear, of what tomorrow would bring, all the uncontrolled emotions just continued to rain down upon us daily.  My husband was diagnosed with Lewy-Body Dementia. My security was for ever yanked away from me. Would I ever know security again? 

Has peace become a distant memory, and joy now a stranger? 

        When the psychiatric doctor asked me what my plans were for Larry, I told him I planned to take him home with me.  He seemed quite surprised by my reply. Then he began to discuss what could have caused the disease.  My reply that it would not change the treatment then I would rather go forward than to worry with what could have caused this. It seemed a little late for that.  Then days later the diagnosis came, it was LBD/DLB.  I had not heard of this before, and would try to check it out later.  Just wanted to get him home...

       After ten days in the hospital, on October 1, 2014,It was revealed to me by the Doctor that Larry could not go home and I would need to find a Nursing Home for him, to be released from the hospital to the NH.  So Larry entered into the horrible cold world of the Long-term Health Care System called the Nursing Home.  Not only into the Nursing Home but on the dreaded locked down Alzheimer's Unit.  For any one who has entered into the Long Term Health Care System, it is as if you have fallen into a rabbit hole and absolutely nothing can or will ever make sense any longer.

       Now at this time private insurance could be used for a couple of months, (I was told it would cover for at least 3 months to 110 days, well it was for 60 days.) One among many tales I was going to be told in the many months to come.  Then came the emergency conservatory that had to be done days past. Scramble, rush, driving to the hospital, to the lawyer, to the NH. Returning the calls to the State,going to court to appear before the Judge, dealing with the state, regarding the cost of Long-Term health Care. 

Paper work became my new nightmare. Papers sent, copies made, signatures, more copies, mail, deliver, fax, return call to ....this one or that one.  My head began to spin, with all the constant requests for paperwork to be found and paperwork to be signed.  I could barely keep up.  While all this was going on I was staying 6 - 10 hours each day with Larry who could not adapt to the change of his living situation. I couldn't explain, couldn't lie to him.  Life was now nothing more than a complete failure to understand or grasp what was really ahead.

        I had began to cry out to GOD long before, the hospitalization...  but did HE hear, was He near, would I feel HIS joy and peace again?  My God my God have You forsaken me?  In my darkest hours as I sought HIM I found....in my search for GOD's hand, HE had never left, nor would I ever be alone. So I could not be dismayed or stay in my despair (which still comes to visit, but doesn't get to stay long.) For GOD is with me always!   

So in your greatest despair please always remember this....

GOD LOVES YOU, and HE my friend will never leave you alone. 

HE is waiting to hear from you.  

You are HIS child and HE wants to take care of you.

                                             JOSHUA 1 : 9

   9)   Have not I commanded thee?  Be strong and of good courage; Be not           afraid, neither be thou dismayed: For the Lord Thy GOD is with thee               whithersoever thou goest.

Prayer for today:
     Oh holy Father God, we come to YOU with a thankful heart, for YOU are holy & just, and Your love for us is beyond our understanding.  But Lord, for so many are very distraught and brokenhearted.  We ask for YOUR mercy and grace that YOU bring us through our despair and use these vessels for YOUR glory alone. May YOU bring comfort with an understanding of the plan YOU have for us to do. That we open up to YOU and YOUR will, all to be done in us and through us. We ask in Jesus' Holy Name,  
AMEN.



     As my journey continues I hope you return for the rest of my story.......