End-of-Life Care Lessons: Saying Goodbye to My Parents with and without Family Support No3

Introduction

How do we face the final moments of someone we love? Even after working in nursing for many decades, the answer has never been simple for me. Being at both my father’s and my mother’s bedside as they approached the end of life deeply shaped who I am today. I would like to share those memories here.

My Father’s Final Days: The Decision for Surgery and a Peaceful Farewell at Home

My father passed away in July 1998, shortly after turning 80. By the time stomach cancer was discovered, it had already spread to his liver and the head of his pancreas. The doctors estimated he had less than one year to live. He also had diabetes and angina, which made surgery especially risky. As a nurse—and as a former staff member of the hospital where he was being treated—I was asked to speak with him about the diagnosis and confirm his decision regarding treatment. After discussing it with my mother, sister, and brother, I sat alone with my father in a quiet room. I told him plainly: “You have stomach cancer.” I explained the need for surgery, the risk of losing the ability to eat if we did nothing, and the surgical risks associated with diabetes, including delayed wound healing. Then I told him: “You may choose whichever path you want. This is your decision.” We did not tell him about the metastasis, based on the physician’s judgment. My father chose surgery—bypass surgery. His recovery was stable; once home, he even hosted folk song gatherings with his friends and comrades from the war. Our family celebrated his 80th birthday with a trip to the Izu Peninsula. That period was filled with precious moments. But within six months, his condition worsened again. Unable to eat, he required central venous nutrition. Soon after, he quietly said: “I want to go home.” We held a family meeting once more—and decided to take him home for his final days. During the ambulance ride, he whispered: “Am I dying?” I couldn’t answer. Tears were my only response. He understood. Before his return home, our family studied Dr. Alphonse Deeken’s work on “Death Education” to prepare our hearts. Home-based palliative care was uncommon at that time. We arranged for home visits from a doctor who was my father’s acquaintance, and I provided night care, including the management of his central line. My family took turns caring for him during the day. On the morning of the fourth day after returning home, my brother woke me from a brief rest: “I don’t think Dad is breathing.” I confirmed his death and performed post-mortem care myself before the physician arrived. My father’s farewell was peaceful, filled with family support end of life and unity—something I remain grateful for.

My Mother’s Final Days: Caring Alone and the Regret That Lingers

My mother passed away in July 2010. She worked in accounting until age 80. After retirement, her dementia gradually progressed. Her relationship with my sister-in-law became strained. I encouraged her to attend day services, but she strongly refused. Eventually, after she complained of not feeling well, I accompanied her to a hospital and gradually helped her adapt to day services. I lived in Kanagawa then and took my mother to my home on weekends. We went driving and spent time together. We also celebrated her 88th birthday—her beiju. One year later, she was hospitalized with pneumonia. My brother told me, “We can’t care for her at home anymore,” and we transferred her to the long-term care ward of the hospital where I worked. Less than a month later, while I was returning from assisting a friend with an election campaign, the hospital called: “She has stopped breathing.” By the time I arrived, she was gone. We could not resuscitate her. She had often said she felt lonely without visitors. I was not there when she needed me most. That caregiver regret still aches in my heart.

The simple but profound act of holding hands at the end of life. This image reflects the deep family connections and support discussed in the post, emphasizing that no one should face these moments alone.

What These Two Farewells Taught Me —The Importance of Family and External Support 

My father’s passing was supported by the united strength of our family. My mother’s passing was marked by distance and by me bearing everything alone. Through these two very different farewells, I learned the most profound end-of-life care lessons: caregiving and end-of-life care depend profoundly on shared emotional connection within a family. And when that connection is difficult, the involvement of external professionals becomes essential for true family support end of life. The greatest truth these experiences showed me is this: Those who care for others need care themselves. The lingering sorrow over my mother's passing taught me about the vital importance of preventing caregiver regret and seeking help. This belief is the foundation of the services I now provide:

• Family support

• Communication and service training

• Patient and caregiver advocacy

If you are facing challenges with caregiving or end-of-life care—If communication feels difficult—If you are trying to carry too much alone— Please reach out. You do not have to face it without support. ✦ From my heart to yours I hope the end-of-life care lessons from my parents' final moments can bring comfort and strength to others walking the same path.