by Julie Saeger Nierenberg
For our last three years of father-and-daughter life on this planet, Daddy and I talked daily to be as close as we could. Our time together was coming to an end, and although we didn’t know when that would happen, we knew it was coming sooner than we wished.
And then we were told the news: “There is nothing more we can do.” But Daddy didn’t feel like dying. He felt full of life and longing to live. He had more to do, more to say, more to feel, to taste, to write, to experience. He was angry and sad, disappointed and confused, scared and brave, unaccepting and, finally, accepting.
In the spring of 2012, when he faced the end of his life, he consciously and courageously engaged each of his children in very direct dialogue, asking us for completion and readiness for his release. He was himself a writer of memoirs in his later years, and in those moments of drawing near to death, he encouraged me to write about the process and to share our story.
He passed while I held his hand, talked and sang to him. In those moments between his last breath and my realization that it was, I felt many things—sorrow, relief, surprise, wonder—and also gratitude and peace that his struggle to live and to die all at the same time was over. I’m so grateful that I was present and that I got to say, “Daddy, you will always be with me, and I with you. My heart and your heart are one. Thank you for your endless love. Thank you for being the very best dad I could ever have.”
Several weeks after he died, I began to feel very intense grief. Writing about the painful process, accepting and integrating my father’s physical absence from my life, made me feel much better. I continued to write more and to feel better and produced a short story about his End of Life from my perspective. Honoring the agreement made before he passed, I published a little book to share with others.
There is great pain inherent in the loss of a loved one. I sure felt it, and sometimes still do! And it is also possible to find unexpected humor, deep connection, healing of past wrongs and loving support of all kinds, from within your own mind and heart and from caring acquaintances. When you let others in your support circles know what you need, acknowledging those needs to yourself, you can better take care of you. And after a loved one passes, you are the one who needs the care!
Many ask me what I have learned from this profound experience and how I might advise others. While I hesitate to give any “cookie cutter” advice, I do recommend preparing yourself to be-with the dying and the bereaved. Being present and open to this new experience was the greatest gift I could give to myself and to my father. Since writing about my experience and my feelings was quite helpful, I also recommend that journaling process to others.
My family benefited from hospice support, highly trained and caring professionals who were standing by and assisting at every turn of the road. Within any family there may be individuals whose relationship with the dying, and with each other, is at a wholly different place. Hospice and other skilled nursing personnel accepted that variation without judgment, while offering appropriate guidance and support to each person in my blended family. I appreciated the sensitive and inclusive way all were treated.
Having choice in all matters that can be chosen creates the most possible dignity and peace in the dying process. When decisions are shared, there can be unity of purpose and support as well as greater acceptance of the inevitable. That is why it is so important for patients’ and caregivers’ voices to be taken into account when making decisions around end-of-life issues.
When all of your medical and emotional concerns can be voiced and acknowledged, including pertinent history, environmental preferences and the actual scenario of dying, then it is far more likely for all to succeed at providing the best care through all the necessary choices.
How can the dying and the bereaved assure they are heard?
• Ask and ask again.
• Listen with patience and compassion.
• Affirm generously.
• Confirm that each decision is truly understood before moving forward. Remember always that most people are not trained in medical, psychological or spiritual matters. They may have fears, doubts and infinite possible misunderstandings.
• Keep communications to each person involved simple enough that a young child could understand them. In grieving scenarios, we are all young children in the way we “show up” because we are grasping to comprehend with our hearts, and our minds often shut down. We present our Inner Child, unprotected and vulnerable, and we entrust the professionals to care for us as they care for our beloved dying loved one.
My dad’s passing, as hard as it was to accept, was also the best I could imagine. Connecting with grieving individuals, bereavement workers, hospice and palliative care centers around the world is made possible through the Internet, and I am doing that bit by bit. More grief healing happens as a result. It is such an honor to write about our story and know that it may touch others.
About the Author: Julie Saeger Nierenberg is a writer, editor, educator and artist. Inspired by the journey of love, sorrow, grief and release through her father’s transition, she published a book called Daddy, this is it. Being-with My Dying Dad. Believing that the dying and bereaved among us deserve a fulfilling death, Julie hopes to contribute to the shift in our cultural preparation for and processing of the inevitable finale to life.
In the last few years of his life, Julie’s father, Armin Saeger Jr., published a book of memoirs, entitled Sowing My Quaker Oats. This was a labor of love and a major accomplishment for a man with very diminished eyesight and a diagnosis of metastatic cancer. Julie illustrated Armin’s book and enjoyed assisting him to draft and shape its narrative. She now coaches other authors to leave a written legacy of love and personal history for their own families.