Making the Best of It~
Watching our father slowly decline and surrender to the disease of Lewy Body Dementia, became oddly easier over time. The beginning of his disease was stomach knotting and scary with a side of intense awkwardness. Helpless and hopeless as we were, we managed to be calm in his presence. We cooked, cleaned, and felt the benefit of distraction as we found any excuse to become “useful”. Once the disease took over dad’s ability to write, drive and later speak, we found a rhythm of acceptance that virtually assisted us in making the best of each visit, each day and each hour.
Early in his diagnosis while he could still speak, we asked him to tell us our favorite stories of his youth. We recorded them so his voice and life could be forever immortalized. Later, when he was confined to a wheelchair, we brought him an iPod shuffle filled with his most favorite rock tunes from the 60’s and 70’s. At each visit, one earbud would go into his ear and the other in ours and we’d watch his smile grow and his face light up as the music moved his spirit. We would look forward to the visits when the music brought him back to us briefly and he would talk or really look into our eyes. At the end of his disease, he spent a number of days screaming with his eyes closed and no one knew if he was in pain. We gathered around him after the morphine kicked in and laid our hands on his arms, head, and legs. In unison, we prayed and sent him our love without words or sounds. Feeling the communal healing energy in a room full of machines was medicine for us all.
Although Lewy Body Dementia won the battle, each level of decline allowed us to make the best of it by channeling a level of creativity we had not known before. A level of love that transcended science and mortality. Each of us were fed something beautiful in the painful journey of losing someone we loved.
