When my brother was 45 years old he began to notice weakness in his right hand. Despite the obvious , “What is going on with my body?” This was very distressing because it limited his ability to carry out his life’s work as a farm manager.
He turned to me, his sister, an RN, to help him solve this perplexing development. With weaving through the maze of small town medicine to eventually ending in a large medical center it was determined that the most likely diagnosis was the beginnings of amyotrophic lateral sclerosis (ALS) or Lou Gerhigs disease. Wow! Talk about a shock! No one in our family, immediate or extended, had ever faced this diagnosis!
My brother was a bachelor with no children so I assured him I would not let him go through this devastating disease alone. Thus, the beginnings of a 13 year long journey began.
His most adamant wish was to remain at his small farm that had become his identity, and his idea of his future. So the battle was begun, plowing through the social services maze to supplement his meager beginnings for retirement and obtaining the needed equipment and services for maintaining him in his home.
We managed fairly well. He was amazing, given the eventual outcome and in a way it was a negative blessing, in that we got to connect on a level we never would have if he hadn’t gotten sick. Because he allowed me to be his advocate and trusted me, virtually with his very life, and because of the very real possibility that he might have found himself in a situation where meaningful communication was impossible, I encouraged him to talk with me of his plans and wishes for his perfect ending. His perfect ending was to die in his home and we ALMOST made it!
As Terry was becoming increasingly fragile and 3 months before his death, it became clear to me and begrudgingly to him that maintaining him at home was too taxing on ‘the system ‘ and on me. My mental and physical health was in danger and thus he and I together had to make changes to his plans. A nursing facility became his new residence which involved a change of attitude on both our parts. His dealing with the anger and feelings of helplessness and betrayal. My dealing with the guilt and failure to cope.
Terry has been gone for a year now, and To this day, I like to think Terry and I were able to reach an understanding and compromise with the forced change in his end of life plans and that we parted siblings and best of friends. With his assurances that he would “SAVE ME A PLACE!”