I always marvel at the connections one can make thru social media. I have had the benefit of making many positive connections on LinkedIn and because of my involvement there, connected with Julie Nierenberg. We both have similar interests re: death, dying and end-of-life issues and we both write. While I have not written a book yet and my focus is blogging and articles, eventually a book may come. Julie has already taken that leap and on such a personal topic.
Within the first 2 pages my eyes were tearing up…Julie writes from the soul. It is obvious she had a close relationship with her father. I also have a close relationship with my father; perhaps that is why this book resonated with me. Julie writes to her father, describes their friendship/father-daughter relationship while at the same time she shares his diagnosis of cancer, and the 3-year process and journey with his deterioration in his health until his death.
It is hard to be a long-distance caregiver, but thankfully for modern technology the phone, email and even Skype can bring that distance closer, not that it can ever replace face-to-face contact.
The stories that are shared are very personal. The manner in how the family was told that hospice was the next step by a physician who was not aware that the patient and family had not been told by the oncologist that further treatment was not an option; basically there was no hope….. that the cancer had metastasized and spread to internal organs. This should not have happened. Because of so many physicians being a part of the picture, communication between them was lacking. No patient or family should have to hear that a loved one is dying in such a manner. My heart goes out to Julie and her family.
I was pleased to read that the explanation of hospice and end-of-life options were shared in a very professional manner and any questions were answered along with educational pamphlets given.
Julie’s description of the end-of-life process will touch your heart and make you want to learn more.
What made you write this book?
Firstly, my dad and I discussed writing “our story” in the few days before he passed. He had written his own book of memoirs, a collection of his life experiences ranging from young childhood, his time as a conscientious objector during WWII, being a Civil Rights activist, his social work career, etc. He never backed down from the hard topics, and sharing his struggles and feelings was what made those stories resonate with readers. He thought his own End-of-Life journey would make a good story. I agreed with him and told him I’d pick up the pen where he left off. Secondly, and what really spurred me to write, was my own grief process. When my despair and sadness peaked, I turned to the exercise of journaling as a way of coming to terms with his physical absence. This book was the result of my grieving, inspired and channeled into a way of touching others’ hearts.
Do you feel the end-of-life care for your father was good? His needs were met?
Indeed, they were. Family members and friends offered their care and supportive presence at every possible turn. Knowing they could be there when I was not was an immense comfort. Hospice and skilled nursing personnel were attentive, responsive and often proactive in preparing us and reassuring us. Dad was almost sightless, and this presented an extra challenge to all, especially to him. He was in loving hands in a caring environment.
You discuss difficulty in answering your father’s questions in the book, “Are you and I finished? Are you ready to release me?” I imagine this was a tough question to answer in the moment. What advice can you share with others?
I recommend considering how important such a conversation would be to the dying person, if he or she chooses to speak of “completion.” In our case, we had no “old baggage” to clear up, resentments or unresolved issues. It was easy to affirm that we were at peace. Nonetheless, it was hard to be ready to say, “I release you. When you are ready to go, I am ready to say goodbye.” Difficult things are often very important things to say. It was important to my dad, and so it was important to me. So, be strong, be vulnerable, show up, and be present in every way that you can. Listen to what the dying one needs to say; say what you need to say to the dying. Death can be “an event full of life” for all concerned.
You make a comment re: being in ‘awe’ that your father was able to say goodbye to each family member in a personalized and individual way with such love and kindness considering he was also in pain.
Yes, I am still in awe of his presence of mind and heart. He was the ultimate example of courageous possibility, good humour, and loving affirmation. He directed the process by reaching out to each of us and accepting what we could (or could not) give in return.
Describe the Celebration of Life that was held after your father’s passing per his request.
Setting the tone was a poem that my brother composed as a farewell to my dad. A choral group from the retirement centre sang songs that my dad had selected. My stepmother had previously written a humourous song about my dad, and her family members sang it. My brother shared remarks about my father’s life, highlighting the impact that his socially conscious leadings had on our lives. In keeping with my dad’s Quaker faith and practice, those in attendance were then invited to share. One after the other, family members, friends, former clients and colleagues offered their personal reflections and words of gratitude. The event was perfectly orchestrated by his lasting effect on all of us, a true legacy of love expressed in a few minutes of gathered sharing.
Do you think your father’s social work background provided him with the skills and knowledge to be ready when he entered hospice to be accepting of the fact that he was dying?
Yes, I do think it helped him. He had a full range of human feelings about his End-of-Life and he owned them all: anger, denial, sadness, fear, and then acceptance. In the end, his physical struggle inspired him to embrace the transition. He prepared himself and all of us most lovingly and with his own sense of humour sprinkled in. He was ready when the time came.
Julie Saeger Nierenberg is a writer, editor, author coach, and artist. Her website is: http://www.createwriteenterprises.com
Daddy, this is It. Being-with My Dying Dad is available in paperback or as a Kindle book from Amazon.
A special thank you to Julie for agreeing to be interviewed and allowing me to review her book!
By Victoria Brewster, MSW