As the 4th of July approaches, it is always a contemplative time for me, that remains true this year, if not doubly so because of the work that I’ve become so passionate about.
I was a little girl when I was introduced powerfully and personally to death. Though it was in many ways hidden from me, and my own private store of memories has little recollection of the day, I was only 5 or so when my grandfather sat down on his front steps watching us play on that 4th of July so many years ago, and never got up. Through most of my childhood, I, in many ways resented him for that, from the perspective of a child I could see only what I had lost, what I missed out on in those tender years, an amazing Grandfather.
My family is not one to talk and reminisce; the closeness of my father to his has always made it very difficult for him to speak of his memory since he passed. I clung to the few memories I had of him, his engineer hat still in my collection of sacred belongings. The small gray mouse he once bought me as a gift, worn and over loved through the years, is still one of my favorite possessions; a good story as well as my family and I will remain forever at odds over my memory that it came with a matching gray cat. I reached for his memories, struggled with his absence and regretted his early departure from my life, I resented my family for not sharing his memory and I viewed his death as a horrible thing that had robbed me of someone amazing.
It wasn’t until years later that my perspective was changed. In the 10 or so years we spent battling my maternal grandfather’s dementia and decline I began to see things in a new light. Though I will forever be saddened that our family speaks little of the man we lost so many years ago and that memories of him are few and far between for me, I’ve come to appreciate and even be thankful for the way he found peace.
He sat down on a beautiful day, surrounded by family and amazing memories, and in an instant he was gone. My other grandfather, with whom I had far more time, was not granted such a swift and benign death and I watched for years as the loss of his world tore his soul apart, I watched him suffer, and I came to understand, that I would have chosen to lose him years earlier, to sacrifice nearly 10 years of time or even more, had it meant that he never had to experience those years….that none of us did.
Is it horrible to wish for someone’s death? After all I realize the impact of what I’m saying – I’m wishing 10+ years of life and memories and his being here on this earthly plane never happened. In the midst of it, at times, we all had those thoughts, sometimes spoken, often not; that his suffering might end, that his body would surrender and he could find peace, something he knew little of in those years where a terrible dementia ravaged his mind and took its toll on our memories.
I wish it had been different primarily for him, you see, I knew too well that look of despair in his eyes, especially in the earlier days, as he grew to understand what was happening, as he failed to understand even his own behavior in the decreasing moments of lucidity. I watched the agony on his face as he told me once how he wished he had never had my mother, that I consequently had never existed, because of how much he hated us seeing him like that. I remember when we took away all the guns from his house to keep him safe, and while I never would have liked to see my grandfather take his own life in such a violent manner, I sometimes today almost wish he had, I wish he had a route to end his own suffering, I wish he had the choice.
I wish it had been different for those he loved. Years of watching the tears in my mother and grandmother’s eyes can never be forgotten. Years of knowing you and your family struggle to hold on to good memories of the man he always was and not let them be confused or clouded by the violent angry man he became. I wish I’d never seen my grandmother’s bruises or smelled the alcohol on my grandfather’s breath as he spit words of venom I never imagined could come from his mouth. I wish we all looked back today and only remembered long walks in the woods with him and his beloved yellow lab, triumphant hunting trips and long afternoons spent learning about the semi-precious stones he spent years mining and collecting.
All these years later, I wish that both of my grandfather’s had been able to sit down on their front porch, surrounded by love and family, and slip away to peace.
Furthermore, while I understand that the length of my grandfather’s decline necessitated my own moving on and continuing to live, choices that moved me far from his side when the final moments came, I will always wish it had been different. I have forgiven myself for not being there, but I’ll never forget that crushing blow of having failed him when he passed and I was not by his side. I know he would have wanted me to move on in those years, I know that even as he hated being placed in psych wards and nursing homes, he would have wanted all that in some way, to see us protected, to watch us flourish in life rather than drown in his disease, he would have hated every sacrifice we made, he did hate it, in ever diminishing moments of lucidity.
My grandmother, strong, steadfast and beautiful in her love and devotion to him, fought to keep him at home by her side until it became far more than she could handle. My parents and uncle made huge sacrifices to support them and keep him out of facilities until it was more than any of us could handle. The physical bruises of those years healed, but the mental ones will remain imprinted on our hearts forever, sadly they taint our memories of an amazing, gentle man we all love so very much.
I wish I didn’t understand as intimately how devastating watching someone suffer can be. I wish no one had to understand it. It seems a cruel trade off to the amazing advances of medical science. The very field I love to work in has perpetuated the monster of long suffering decline and death. I in no way mean this statement to say I wish medical advancement had not come as far as it has, I celebrate that, but in light of the changes in our society that have come about due to medical advancements….it becomes necessary for us all to grow and learn and change when it comes to perception of death. Most of us will never go from vibrant life to sudden death as the majority did in previous generations. In light of these changes, we now much consider that end and what we value as it approaches. The conversations that were rarely as necessary so long ago become vital today.
“’Is she dying?’ one of the sisters asked me. I didn’t know how to answer the question. I wasn’t even sure what the world ‘dying’ meant anymore. In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality and created a new difficulty for mankind: how to die.” Atul Gawande, Being Mortal, p158
The fact is that, medical science now presents to us a paradox. Studies actually show that longevity and quality of life improve when a patient enters palliative and hospice care in many cases of advanced terminal illness. Through supportive therapies, pain control and increased conversations about desired quality of life, people choose not to “give up” as it is often perceived from the outside, but how to live the remainder of glorious life in peace and quality. We, as a society, begin to learn, that just because medical science has a lottery ticket to give us, most of them will never improve the quality of life; what improves our quality is acceptance of where we are at and a choice to live whatever time we have to the fullest, with less medical intervention and their inflicted side effects and more focus on the values that make our lives, the ones we love, comfort, autonomy and peace.