A Hospice Social Worker, a Grieving Daughter
I leaned against the wall for support as my father was intubated and brought to the ICU. Not genuinely understanding how dire his condition was, I hoped he would be back in rehab in a few days. I was completely unprepared when I was finally allowed to see him. I took a few steps back and gasped in horror when I saw my father laying on the hospital bed, eyes closed, connected to numerous machines meant to keep him alive and monitor him. It slowly became apparent that he was utterly dependent on those machines to take care of his failing organs, provide nutrition, and assist in delivering medications. On that day, I was not a hospice social worker but a patient’s daughter, who felt utterly helpless and terrified that my daddy was going to die.
For the three weeks that followed, I visited my father several times a day, watching the revolving door of doctors and nurses trying to keep him comfortable and help him stay alive. They worked tirelessly, trying different medications, even dialysis, but it did little to improve his overall condition. I was emotionally and physically exhausted, often feeling helpless and paralyzed. I found myself consumed with guilt for not doing more for my father in the past. I prayed that I would make the right decisions for him now. Devastated, I felt powerless when I watched him being tortured with different therapies to stay alive.
From the moment my father was intubated, he never spoke again. He was unable to communicate, except through his living will, his last gift to me, where he clearly stated he did not want to live on a ventilator. I was his health care proxy. The doctors and I agreed to follow his wishes.
My body was overcome with nausea when I entered my father’s room, where I found him surrounded by several nurses and the ICU doctor. They told me they were going to take him off the ventilator. I thought I was going to collapse. I staggered to a chair next to my father’s bed and carefully sat down, looking up at them as they spoke. All I could think was, “Has the time come? Am I going to lose my daddy forever? Oh my God.” My heart raced as I began to comprehend what was happening. They told me that If he were able to breathe on his own, then they will continue to try to repair his other organs, but if he is unable to breathe on his own, they will not replace the ventilator, and he would die.
I walked downstairs to where my weekly bereavement group was soon to start and told Sol, who arrived early, that I had to cancel. I canceled my afternoon visits and called my hospice manager, who graciously sent one of our hospice team’s nurses to help. I called two of my children, putting the phone to my father’s ear for them to say goodbye, and my third came to sit with us, joined soon by my ex-husband, who sat by the window.
My body shaking, my stomach in knots, I slowly lowered myself in the chair near my father’s head and watched intently. I felt powerless. I was stuck in a nightmare. The nurse took out his feeding tube, moved all the equipment except his IV that provided him with pain and anti-anxiety medications and his monitor. For only seconds, I sighed in relief when the hospice nurse walked in but quickly realized that she was here because my father may ... actually... die.
I knew my father could hear us, and I wanted him to understand what was happening. “Daddy, I am here with Anne, Jude, and several nurses. Anne has your hand, and I am touching your arm, shoulder, and head. The nurse is going to give you medication, so you aren’t in any pain.” I took a deep breath and continued, holding back tears. “They will then turn off the ventilator. You do not need to fight to stay alive for the children and me. Whatever you choose, we will be okay, and we will take care of each other.”
I looked at him, and for the first time since he was intubated, he communicated: a tear fell down his cheek. At that moment, I was certain that he was going to let go.
I had my hand on my father’s arm and my other caressing his head—I watched the respiratory therapist walk around my dad’s bed, removing the tube, before leaving the room. Terrified of what was to come, I closed my eyes tight, for a second only, then closely watched the ICU nurse and the hospice nurse add more medication to his IV. As they viewed his vitals on the monitor, I stared at their faces, trying to discern what they were thinking. Holding back tears, I tried to be strong for everyone, but deep inside, I was petrified. My focus now was trying to make my father’s journey peaceful and for him to feel loved and supported. I was in a hybrid mode. Half social worker/half daughter.
I turned to Anne, “Are you okay?” I asked, lightly touching her arm. She barely shook her head yes, tears welling in her eyes. I turned to my father.
“I love you so much, Daddy, and appreciate everything you’ve done for the kids and me. We will take care of each other, so don’t worry; we have learned so much from you.” I reminisced and let him know how much we have learned from him. “I know you told me that you don’t believe in the afterlife, but I am certain that you will see Mommy again. Daddy, can you please send me a sign that you are okay?” I asked.
I gazed at my dad, kissed his head, and glanced at the monitor’s digital record of his heart rate. He took breaths on his own and continued to breathe for about 40 minutes. At first, I was sure he would be able to sustain this, but soon I realized that his breaths were slowing down; and his other vitals were declining. The nurses managed his discomfort with the medication when he showed signs of pain and anxiety, leaving him visibly calmer and more peaceful.
I looked over to the hospice nurse. “Is there still a chance that he will be able to breathe on his own?” I asked.
She shook her head no. It was at that exact moment that I realized that the goal was only to make him comfortable.
Then just like that, he stopped breathing. I was in shock and felt paralyzed as I watched the ICU nurse turn off the monitor and record the time of death. “Oh my God, this can’t be happening.” I burst out in uncontrollable tears. Anne was crying too, and I held her tight. I couldn’t believe this was happening. He was here one minute and then gone. The pain was unbearable. “My daddy. I want my daddy....” My heart ached.
Several friends of my father went in to say goodbye, and when they left his room, the attendants wheeled a metal coffin to the door and waited for me to leave. I asked the nurse if I could walk with him to the morgue. Although I was aware that I didn’t sound rational, I didn’t want him to be alone. The ICU nurse strongly suggested that I say goodbye before the attendants took him and assured me that he would be taken care of. I intellectually understood. I had always recommended that my patients’ families not watch the funeral home attendees carry their loved ones to the hearse. It could be traumatic. So, I heeded the nurse’s advice, thanked her, and said one last goodbye to my father.
At that moment, I realized that my whole family was gone. My mother died seven years earlier, my brother five months earlier, the only aunt I had, and the only grandparent I knew, died decades ago.
I could barely breathe. I no longer had parents or a chance to repair my relationships with them. I was no longer a daughter, nor a sister, nor a granddaughter, nor a niece. I had no one to discuss our shared memories or teach me about our family history. The feeling was utterly devastating, and the concept impossible to grasp. I was left feeling completely alone.
More than ten years before my father died, I became a hospice social worker who primarily visited patients in their homes. I immediately felt this was where I belonged. I was honored to be welcomed into the homes of hospice patients and their families at the end of their life when they were most vulnerable. Together with my hospice team, I strived to soothe the emotional pain of my patient and their loved ones. Time and time again, I wished I could wave a magic wand to take away their anguish and grief, but I could not. I did try to help them cope and feel supported from the moment I entered their home, through the patient’s decline and death, and after with bereavement support.
I often held my patient’s hand, figuratively and literally, as they shared incredible life stories, expressed their anticipatory grief at what they will miss, such as their children’s weddings or planned vacations with their spouses. They shared their fears, intimate secrets, and concerns for their surviving family and friends.
I also spent time with patient’s loved ones helping them cope with their feelings, their struggles with day-to-day care, their anticipatory grief, grief, their fears and concerns as they watched their loved ones decline. I helped them speak to the patient, other family members and friends and make decisions.
Occasionally, my patients would be troubled by unfinished business, and I would try to help them. I remember visiting a 45-year-old man, S, who was dying from liver disease and moved in with his mother at the end of his life. He had not seen his 12-year-old daughter for five years. I understood that years of addiction and mental illness and his combative relationship with his daughter’s mother had contributed to their separation. Still, I hoped they could meet, at least once, wishing this would bring peace to S and his daughter. I spoke to the mother of his child several times, addressing her concerns, and she finally agreed to a meeting. He was able to tell his daughter that he loved her, she told him the same. He did not need more; just knowing she knew who he was and that he loved her brought him tranquility. She made him a card that was taped on the wall by his bed. He died in peace just days later, his mother by his side.
I visited his mother weekly over the following year, helping her cope with his death, her grief, and her relationship with her granddaughter.
It is my experience that the support of others, such as friends, groups, people who have had similar experiences, and professionals are the most helpful when coping with any trauma. Someone to talk to. Someone to listen. Someone to be silent with. Just knowing someone is there and you are not alone is huge. There are many ways to get support when a loved one is ill and dying and after a loved one dies. Individual and family counseling, caregiver’s groups, and bereavement groups are just some options offering ongoing support, validation, education, and the tools to help you cope and heal.
I found a wonderful public group on Facebook called Signs From Our Loved Ones. The members are incredibly supportive, compassionate, and empathetic.
National Suicide Prevention Hotline: 1-(800)-273-8255 (24/7 free and confidential support by phone or online chat)
