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