“So this is the way it unfolds. In the absence of what people like my grandfather could count on- a vast extended family constantly on hand to let him make his own choices- our elderly are left with a controlled and supervised institutional existence, a medically designed answer to unfixable problems, a life designed to be safe but empty of anything they care about.” – Atul Gawande, “Being Mortal”. As I read these words from Dr. Gawande’s bestseller their importance resonated with me. After all, I had spent the last last three months ruminating over every detail of my mother’s death. I wondered if the medication had been restarted earlier would the outcome be different. I thought about her doctor’s words stating that we are putting band aids on the problem and how I thought then just put the f-ing bandaid on! And yet I knew the doctor was right so I agreed to consider his plan. I agonized over whether we had done too much in the case of the PIC line or too little by not being aggressive enough. Dr. Gawande states “At least two kinds of courage are required in aging and sickness. The first is the courage to confront the reality of mortality- the courage to seek the truth of what is to be feared and what is to be hoped…But even more daunting is the second kind of courage- the courage to act on the truth we find… One has to decide whether one’s fears or one’s hopes are what should matter most.” But whose fears or hopes? The patient? The family’s? The medical team? He is referring to the patient but the patient does not exist in a bubble. It takes a village to help the elderly.
The courage I needed was in the truth I would find. The truth was in the conversation that started back in 2008. It was just another ordinary day. I had invited my parents over for dinner. They appeared happy and looked forward to a good home cooked meal that I jokingly slaved over. My father usually gave me “5 stars”. “Dessert comes with the meal” was my usual quip. On this occasion my mother told me they had been to the attorney to discuss their health care plans. Information was often passed to me on scraps of paper with my mother’s handwriting. Today she had a blue folder. The contents were typed on paper with a letterhead. This was serious stuff. My parents told me that I would be in charge of health care decisions for them. I was their youngest child but due to my RN license and my close proximity to them I was the obvious choice. We discussed what they didn’t want: no tubes, no machines. They told me they were to be cremated. They had made all the arrangements. My job was to carry out their wishes. My parents were in good health at the time. As I nurse I understood the importance of designating a health care proxy. I was glad that they were proactive in their health care. They started the conversation that all families should have before a crisis when there is a pragmatic plan without the emotion attached. This piece of legal paper and the subsequent conversations with my parents about end of life choices has saved my sanity. I know without a doubt that I upheld my obligation to my mother. “Technological society has forgotten what scholars call the “dying role” and its importance to people as life approaches its end. People want to share memories, pass on wisdoms and keepsakes, settle relationships,establish their legacies, make peace with God, and ensure those who are left behind are okay. They want to end their stories on their own terms. The role is,observers argue, among life’s most important, for both the dying and those left behind.”
I would consider my mother’s “dying role” to be from September 2015-April 2016. During this time my mother was on a carousel of hospital, rehab, home. Each step of the way we were confronted with the question of whether or not my mother was safe at home with an 89 year old caregiver, my father, her husband of 63 years. My honest answer to myself was safe enough. I certainly understand the importance of safety. It is always the focal point of national guidelines for nurses. However my conversation with my mother convinced me to focus on putting life into her time on earth rather than time into her life on earth. Elderly people want to spend time with family. Studies show they spend more time being and less time doing. My mother enjoyed the company of family. At home,in the familiar surroundings, she felt safe and secure. Sure she ended up on the floor and couldn’t get up. My father made her comfortable with blankets and pillows until help arrived many hours later. When I saw my mother propped up on the floor with a snack in front of her she looked like a kid at a sleepover. Imagine my surprise when I read about a similar scenario in Dr. Gawande’s book. This was the new normal in my parents’ life. I called it The Adventures of Mae and Wil. The point is that although those in charge of patient aftercare in nursing home rehabs and hospitals saw my mother’s situation as less than optimum I believe they were using the wrong criteria. The criteria that I used was What does my mother want? What can my father do safely? We got extra services and kept my mother home. She was living her life as she chose.
The last month of my mother’s life was difficult for the family. We knew it was the end of the carousel ride. Coming to terms with your mother’s mortality is gut wrenching and heartbreaking. My mother was aware that her life was coming to the end. She told her children she loved us. She said she was happy. She had many family members come to spend time with her and pray with her. She saw in her great-grandchildren the legacy she was leaving behind. My mother left this world in peace. She knew she was loved. She left on her own terms.
“For human beings, life is meaningful because it is a story. A story has a sense of whole, and it’s arc is determined by the significant moments, the ones where something happens. Measurements of people’s minute – by – minute levels of pleasure and pain miss the fundamental aspect of human existence. A seemingly happy life may be empty. A seemingly difficult life may be devoted to a great cause. We have purposes larger than ourselves. Unlike your experiencing self- which is absorbed in the moment- your remembering self is attempting to recognize not only the peaks of joy and valleys of misery but also how the story works as a whole….and in stories, endings matter.”