Marian Helper Winter 2015-2016

16 M arian H elper • W inter 2015-16 • marian.org I started seeing the signs years before the diagnoses. This brilliant man, the love of my life, had begun acting peculiarly. This man who had worked as an accountant at the World Bank — who was always meticulous, always organized — could no longer even balance a checkbook. He started forgetting conversations. He turned suspicious about everyone and everything. He once hid my purse in the dryer for fear someone would steal the money. This was not the man we all knew and adored. He was ill. That much was clear. We met for the first time before Mass one morning. Our priest introduced us. We married in 1983. We both had teenagers from previous marriages, five children in all. We called ourselves a “blended family.” He was a Knight of Columbus. Upon his retirement in 1986, we traveled together. We played golf. We battled at check- ers. We loved Irish music. And we joyfully watched as our number of grandchildren increased to 13. Now here he was — my Bernie — barely 72 years old and his cognitive functioning deteriorating. In 2009, we had our explanation. He was diagnosed with Alzheimer’s. Two years later, he was diagnosed with Lewy Body dementia and Parkinson’s. Our lives were turned inside out. I would come to know that dementia is a “family disease.” That is to say, it affects everyone, emotionally. His disease was terminal. There was no turning back. It was an intruder. It moved in on us. We knew it would write its own end. All the while, we leaned on our faith. God gave me the grace to know the depth of his love for me and the depth of the love I had for my husband. Through my tears, I came to understand God’s plan for Bernie and me. God would remind us of our mortality and how our real home is with him in eternity where there is no pain and no disease. In the meantime, brick by brick, I was determined to build a life here on earth that sought to fulfill my role as a spouse. This “intruder” was bent on separating Bernie and me, tearing us apart, but I wouldn’t allow it. Our bricks would be our faith. The work to assemble these bricks consisted of prayer and care — praying the Divine Mercy Chaplet a nd th e Rosary, and caring for this man to whom I vowed my life in sickness and in health. Our mortar was an ever-binding love. Upon his diagnosis, I began studying th e lives of the saints and soon discovered examples of faith amidst calamity. I began to go to daily Mass. I studied practical guides on how to spiritually and physically care for loved ones dying from a cognitive disease. Sharing such information would become a ministry of mine that I continue to this day. The world is filled with people who experience a similar situation to mine — of witnessing a loved one dying. And as we all soon figure out, we have to engage in two seem- ingly contradictory things: preserving the bond we have with our loved ones while also preparing to let them go. Let me share how I chose to handle it. I would touch him more gently and not have him see me cry. I would tell him how much I loved him, how the family loved him, and how very grateful we were for him. I would laugh with him. I would pray with him, each day giving the Lord thanks for our life, our love, and our family. Of course, I never wanted to let him go for even a moment. But for all of us who have traveled this path — whether caring for an ill child, parent, or spouse — we do get pulled into the darkness of sorrow. We some- times walk in fearful solitude along hospital corridors. This journey, however, must be one of hope. We must pay tribute to our love by reaching for consolation in our faith and seeking to comfort those around us. Bernie died in 2012. I was with him when he drew his last breath. He was a beautiful man. In his life and in his death, he showed me how to cry, how to laugh, how to love, how to live, and how to feel good. Jane B. Sweeney of Fort Myers, Florida, is the author of Caregiver: My Love Story — Facing Dementia . Visit CaregiverDementia.org for more information. F amily matters — the story of a wife TILL DEATH DO US PART By Jane B. Sweeney MH