Anticipatory grief occurs when a loved one is given a life ending diagnosis or when we come to understand that they are declining and will not recover from any cause. It’s important to understand that this is a normal reaction to their anticipated death. We grieve for them long before they physically die. I experienced anticipatory grief when my father was diagnosed with Alzheimer’s Disease. I share my story in the hope it will help someone who is on this difficult journey.
My dad was the best man I’ve ever known. He was honest, ethical, hardworking, humble, and so very caring. He was a big, fit man who was still walking three miles twice a day on his treadmill at age 75. He was very humble and quiet and always stayed in the background drawing no attention to himself. He was the rock of our family.
One of the things I admired most about Dad was his brilliant mind. When he began to have lapses of memory I attributed it to his advanced age. Before long, it became obvious that his cognitive issues were much more serious.
When he started repeating questions and telling me about the same things over and over again, I knew in my heart he had Alzheimer’s. When the doctor confirmed the diagnosis, it became very real. My dad looked the same, but he was becoming a very different person. I grieved the diagnosis and his decline.
I knew intellectually that I couldn’t stop the progression of the disease or save his life, but I tried. I realize now I felt as if I stood between my dad and death, and I fought his decline and death for a very long time. New medications, therapies, and cognitive exercises all failed. The first time he didn’t recognize me I sobbed my heart out. From this point on, the game plan changed. It was no longer about saving him. It was about salvaging as much of his dignity as possible and keeping him safe and comfortable. I grieved the death of the hope I had for slowing the progression and saving his life.
As he continued declining, I had to adjust my definition of dignity. He moved to a wheelchair and then diapers and then came the fetal position. My smart, strong dad transformed into an infant in a man’s weak, dying body. I grieved for him and all he had lost. And I grieved for me as I helplessly witnessed his decline.
When he died, I was relieved for him. He would have been mortified if he had known the state of his body and mind. I was also relieved for me because the battle and the constant surrender were finally over. I grieved my “Alzheimer’s dad” but I had difficulty remembering who he was before Alzheimer’s. Months later, the memories of my strong, brilliant dad began to resurface, and I found myself deeply grieving the dad I had known before this heartbreaking disease stole him from me. All of who he was came rushing back and I grieved him in a very different, much deeper way.
Through this difficult journey, I discovered how little control I actually have over most of what happens in my life. I learned to surrender this false sense of control and to respond as the unknown unfolds. I discovered that although love is strong, some things are stronger and cannot be changed by love. I learned how beautiful it is to return the love and care my dad had always shown me.
Life’s most important lessons often come through difficult times. I’m grateful for all I learned on this journey and for the best dad anyone could ask for.