Accepting the inevitable: The last days with my Dad

Dad 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.

For the past three years, I talked to him daily to be as close as I could. I listened as he told me everything he could think of about his day; he often told me the same things twice. 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.

In 2009, he was hospitalized with a blockage that required surgery. A bowel tumor was detected and, despite its removal, Dad’s cancer grew. Next, they removed half his liver—a big operation that beat him down emotionally and energetically. He rallied by setting small physical goals and systematically beating them all, with each phase of cancer growth and each new method of zapping it while preserving the human body where it grew. Since he couldn’t tolerate chemotherapy, Dad opted for other treatments that worked effectively… right up until his most recent hospitalization.

The plan was to get him feeling stronger and send him home. I was with him at the hospital waiting for the physician to talk with Dad about his release the next day. He was eager to go home to his apartment and to see my stepmom, recovering from surgery in another facility. Our mood was jovial, hopeful.

The doctor arrived and asked Dad how he was feeling. “Not so bad,” was my Dad’s reply. “Will I be going home tomorrow?”

“We will release you tomorrow or Tuesday at the latest …” Clumsily, the doctor added, “And I recommend that you visit with the hospice coordinator and get that support system set up before your discharge… [He said what?]… with no further treatment options.” Period.

Hospice? How could that be? Why, Dad had just received encouraging news a few days before! Did the doctor say hospice? The room seemed to cave in on me as I looked at Dad’s shocked and fallen face.

The doctor bumbled the “there-is-nothing-we-can-do” end-of-life news and traumatized Dad unnecessarily with his abrupt and backhanded delivery. I thank the Universe that I was there to ‘translate’ the newest findings and to ease the unexpected blow—even if just a little bit—by absorbing it along with him.

Hospice? No more treatments? No more goal setting. No more … everything. This is it, then! Life is coming to an end and I’m not ready. I have more life to live. There’s more life in me. I’m not ready for this news. Hold me, hold me,” my father reached for me through his broken words.

And then the tears came. I held him as well as I could, standing next to the hospital bed. We cried and cried. “I’m so glad you are here. Thank you for being here,” he repeated.  We cried some more. And then we talked it over again, everything the doctor said and what that meant for our future.

One by one, Dad and I contacted everyone who needed to know. Again and again, we repeated: Dad would not return to his apartment. He would not be getting better this time. He would be on hospice and facing the end of life. One phone call blurred into the next: waves of tears and words of comfort, disbelief and bare acceptance.

Our family opted for the extra layers of hospice support, thankful it would augment his skilled nursing care. Each morning my father mustered all his strength to be with my stepmom at her bedside, cheering her on as she recovered from her own health issues, lovingly being present as only he could.

Children, stepchildren, grandchildren and some great-grandchildren came to visit him. In private turns, he hugged each of us close, assuring us of his undying love and the certainty that love never dies.

When it was my turn, he asked me if I was ready to release him, if we were ‘finished’.  Through my tears, I said bravely, “I am complete with you, Dad. When you are ready to go, I’m okay with that.”

“Thank you. Anytime you want to feel my love, it is there for you, and it always will be.” He spoke to each of us in much the same way.

Tears streamed down our many faces, as we hugged, kissed, held hands and breathed together, feeling the gifts of time, words, joy and peace—a lifetime of sharing summed up in a few precious moments. He just wanted us to be there, and I was so thankful that I was. We laughed. We touched. We accepted the inevitable.

My Dad 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, finally, 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.”

Julie Saeger Nierenberg is a writer, editor, educator and artist. In the last few years of his life, Julie’s father, Armin Saeger Jr., published a book of memoirs, entitled Sowing My Quaker Oats.

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  • http://www.facebook.com/meaghan.okeeffe Meaghan O’Keeffe

    What a beautiful tribute to your dad. And how eloquently you captured a monumental journey in small, pregnant moments.

    • Julie Saeger Nierenberg

      Thank you, Meaghan. My dad led our family very courageously and lovingly through his final days, and he continues to be an inspiration.

  • fletchen

    At least you were offered hospice, were able to speak with your father and had the chance to say goodbye. My mom entered the ICU and never woke up.

    • Julie Saeger Nierenberg

      Yes, I think my dad’s experience was about as ideal as could be. He and we had time to prepare and to process, though it still seemed very short. He was able to return to familiar surroundings and be at peace. I wish all could choose the type of experience they will have at the end of life. Whenever we can, I think that is important to do, but as you point out, it is not always possible. Thank you very much for sharing.

    • LastoftheZucchiniFlowers

      fletchen: I lost my dearest mother in an ICU after a terrible and sudden accident. Losing a parent quickly is horrible and there is no chance to prepare, so the shock is complete and the acceptance is difficult – almost unbelievable. One minute your parent is there, talking to you and the next moment they’re gone? Impossible to understand how this can be….However, the other side of the coin is this loss of a beloved parent for which we can prepare and adjust to with a bit more time, but no less grief for the loss. I understand your words and also know that there is no ‘good’ way to lose a parent. Fast or slow, the sorrow and heartache is the same.

      • Julie Saeger Nierenberg

        You said this so very well. Sorrow is with us even under the best of circumstances.

      • fletchen

        In our case, she entered a small hospital for a surgical repair of a hiatal hernia that led to complications such as necrotic stomach tissue, pneumonia and ARDS. We were told to be patient and wait for her to “wake up” and prepare for her to go to a rehabilitation hospital. Every attempt to move her from the ICU for a test, such as an MRI, would lead to crashing vitals. Then, at around week 7, a neurologist from an affiliate hospital told my father that she no longer had brain function and that she would never return to us. We asked for one more EEG to confirm, since only 2 tests had been run. The neurologist never came to speak with me or my siblings, and there was cold comfort. My mom was only 69.

  • Docbart

    Thank you for sharing that. I’m sorry your father’s doctor was not more sensitive about that sad message.

    • Julie Saeger Nierenberg

      Thank you for your comment. I don’t think he realized that we didn’t know already, so it came as a shock to my father and also to the attending physician. The oncologist had visited one day prior without any hint of the extent of the cancer’s spread. I am certain that all who cared for my dad had the very best intentions for him and for our family. This process of dialogue around ‘end of life’ is one in which we all have something to learn, don’t you agree?

      • Docbart

        I do agree. I am not an oncologist, but rather a consultant in a different subspecialty. When I am about to see a patient in this situation, I try to ascertain in advance how much the patient and family have been told. I can’t say why the oncologist communicated so little. That was certainly not in anyone’s best interest.

        Thanks again for sharing.

  • LastoftheZucchiniFlowers

    My father also left this world too soon from the ravages of cancer and his surgeon/oncologist mentioned hospice well before my dad was ready to hear about it. Like your father, my father valued life and living (his first grandson was only a few months old!) above everything even in the face of the many losses brought about by fighting cancer. Unable to eat or swallow for nearly a year and living with a tracheostomy convinced him that hospice was a good thing (which it was). Understanding that the service requires only a six-month expectation of life (and this is not a predicition, only a requirement of certification) is vital for patients and their families. As it unfolded, my dad lived PAST the six month point and had to be recertified but sadly declined a few weeks after that. The time I spent with him was precious to me and the pressure NOT to chase after further debilitating surgeries gave him the respite he desperately needed at that time to just live, seeing many loved ones for the last time and saying that which needed to be said.
    Hospice is not always understood even after all these years after Kubler-Ross did her seminal work……Medicare hospice is one of this nation’s most important services to patients but studies reveal that older Americans access it much too late in their illness, sometimes only days before their deaths. The fear associated with death and lack of true understanding of what hospice can offer makes it more likely likely that too many patients will miss out on the many advantages it can bring patients and their families.

    • Julie Saeger Nierenberg

      Thank you so much for your comment. Even though it was not introduced to us in an ideal manner, the hospice offering and timing for my dad was none too soon and we appreciated all its benefits. I was especially grateful that it could be ‘layered’ over the care he was receiving in his retirement facility’s skilled nursing unit where he already was familiar with many caregivers and staff. I agree with you so wholeheartedly that end-of-life care and accessible benefits are poorly understood. Being open to conversation about these issues can help us all to embrace death as the last chapter of life and make it a better finale than if we are making fear-based choices. Your dad sounds like an amazingly courageous and caring man. Hurray for such dads as ours!

  • militarymedical

    There is no good way to lose a parent, even though we all know it will happen in time. There’s something poignant about being a middle-aged “orphan.” To touch on a related topic, informing patients and families about hospice is one of those aspects of care that is many cases would be better done by RNs. While long-time physicians may know their patients well, specialists – as this illustrates graphically – usually do not. RNs who have been attending a hospitalized often get to know those patients, and families, better than their various physicians. It would not be better in all cases, obviously, but in those cases in which the primary physician KNOWS (or can find out) that a specific RN has a closer relationship with the patient and family, why not give him/her this responsibility? It really would be teamwork at its best.

    • Julie Saeger Nierenberg

      You make a great point. Communication is of the essence. Dr. Virginia Seno, a nurse educator who established the Esse Institute to train caregivers and support end-of-life communication, is one who makes this same point well in her resources. Ongoing support and knowledge of the patient and family create the best atmosphere to assist in the acceptance and the grieving process. Nurses often have that advantageous position. Thank you for your comments.

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