What My Dad’s Death Taught Me About Dying
Three years ago, my father and I rode horses together for miles and miles of trails at a Florida state park. Two weeks after that, the world shut down and two years later, he died. His dying was my first very close-up experience with serious illness and death.
If we’re lucky, we learn something from our parents about how to face the end of life. Maybe they talk to us about how they want to spend their last days, what they most fear, how they feel about us, and what they believe about an afterlife. But for my dad and me, it didn’t go down like that.
He came home from his second to last hospital visit and sat me down to go over how much money would be available to take care of mom, and where he wanted to be buried. A few minutes later, he yelled at me for moving a chair he used as his resting post between the living room and the bathroom.
As it turns out, dying looks a lot like living. In retrospect, I find this enormously comforting and wouldn’t want it any other way. In my father’s dying, here are the other big lessons I learned.
Quantity of Time Can Trump Quality of Time.
The biggest lesson dad’s dying taught me is that life is precious, even when it’s bad.
I’ve spent my career trying to reform and mitigate the overly interventionist nature of our healthcare system. I wrote about this in one of the first Daughterhood blogs, “Your Parent’s Death: Facing Fear and Finding Meaning.”
So, I came into my dad’s situation primed to do battle with the evil healthcare industrial complex. He was diagnosed with a severe version of Myelodysplastic syndrome (MDS), which is basically when your bone marrow stops making new blood cells. My dad’s version of this illness was so severe that he required red blood cells and platelets infusions every week, which translated into traveling to the hospital infusion center nearly every day to wait for hours for this process to unfold. It was painful, time consuming, boring, and exhausting.
There are many other awful details – hospitalizations for pneumonia and lung fluid — but whenever his Oncologist asked him if he was done fighting, he’d always say, “no.” He was still living his life, however hard. He looked forward to my macaroni and cheese for Christmas dinner, to his conversations with my sister. We watched wildlife documentaries. He’d perk up for classic sitcoms and sitting outside on the porch. He rallied for several nights the last week of December 2021 to tell long stories to his grandchildren about how he met my mother, his time in the Marine Corps and the Virginia Military Institute.
On the last morning that my kids or I would ever see him, he came to the breakfast table and bravely told them he was proud of them and that they should aim high in life… “reach for the fruit high up in the tree.. anyone can pick low hanging fruit,” he said. Over a month later and about forty-eight hours before he died, as his heart slowly stopped in the North Florida Regional Hospital emergency room, he rescinded his Do Not Resuscitate (DNR) order to continue living mechanically for the time it would take my sister and me to arrive and hold his hands while he took his last breath.
Dying is Not Linear
Lesson number two is that we are all are alive until we aren’t.
On one of the interminable infusion days in the fall of 2021, I barged into the infusion nurses’ break room to ask my question, “what will my dad’s death be like?” I was trying to figure out what would happen if he were to forgo the frequent blood transfusions and move into Hospice care. How long would it take and what would his death be like? If anyone would tell me the truth, it would be these nurses, who had become like family to us.
But they couldn’t because they didn’t know. I couldn’t get anyone to answer that question.
My father died on February 9th and yet on February 5th, I talked to him about normal stuff… work, his frustrations with his computer. “We’ll figure it out when I get there in a few days,” I said.
I guess I thought death would announce itself. There were so many moments in the six months leading up to my dad’s death, I was sure, “this is it!” I cancelled the meetings, booked the airline tickets, rushed to the hospital.
I had pictured a long deathbed vigil, but we only had 24 hours when we really knew that this, for sure, would be the end. As I’ve talked to friends and experienced deaths of friends and colleagues over the last year, I’ve noticed this phenomenon. There’s no linear process – no guidebook for how it will all play out.
The Hospital Can Be a Good Place to Die
Lesson three: There’s no one-size-fits all approach to dying.
In healthcare policy land, I’ve been indoctrinated that dying in hospitals is a bad outcome. We should aim to die at home, say the proponents of palliative care and hospice. But while I know that many people prefer to die at home, I also know that many caregivers report being stranded there with stressful medical responsibilities.
Here’s what I experienced. The hospital – the ICU at North Florida Regional Hospital in Gainesville, FL, specifically – was an incredibly supportive environment for my family to spend the last precious two days of my dad’s life.
As I mentioned above, my father’s heart gave out the first weekend in February. He was transported to the emergency room where, in a moment of clarity, he rescinded his DNR, was intubated and admitted to the ICU where he lived for another 48 hours before we asked for the life sustaining treatment to be removed.
I arrived a day after he was admitted. The first thing I saw was a picture of a rose on his hospital room door – to indicate a dying patient and family. I was greeted by a palliative care physician’s assistant who explained what they were doing to temporarily prolong his life while the family arrived. Then we made a “plan” for removing these measures when we were ready.
From this point on, we were given privacy and a measure of quiet. Occasionally we could tell that my father was uncomfortable, and we’d ask for more pain medication. The hospital chaplain came by. Our family chaplain came by. In short, we felt held in a sacred space by the medical team and our ministers.
The respiratory team asked us to leave the room briefly while they removed the intubation, and then we were all alone – my mother, sister, and me – to be together during the last 20 minutes of my father’s life. I don’t remember the names of our nurses, but I remember their support and kindness.
I am sure that our access to such great care was due, in no small part, to my father’s top shelf insurance status. He had traditional Medicare fee-for-service coverage plus employer sponsored retirement secondary insurance from the federal government. I don’t know if we’d have had nearly 48 hours of a single room in an expensive ICU bed otherwise.
As he took his last breath, I had a vivid vision of him riding his horse – who had died only one month before him — in a beautiful sun-drenched field filled with wild-flowers and trees.
And in that moment, I realized that living and dying are the same… hard, beautiful, painful, bittersweet, and unpredictable.
Anne, so beautiful, the horse and your Dad’s dying story. I don’t know where we are “supposed” to die. Or, if it is ok if no one is there when we do die. I do believe it is better to know how the body shuts down so we accept that process, (hospice explained it to me when my Mother was dying). I also have come to believe, after the death of my Father my brother and my mother, (all in different circumstances), that it is an experience for the living.
An experience that we relive, revisit and question. Even when someone it very old and/or sick, we still question why? Intellectually, we understand, but on a visceral level our mind doesn’t grasp this reality.
Thank you for writing such an honest story.
This is so beautiful, Anne. Thank you for sharing such an intimate experience with us.
Anne, thank you for this beautiful and honest reflection.
This was beautiful. Thank you for sharing.
My mom’s passing was just the complete opposite of what you experienced with your Dad. Although I experienced some similar feelings and situations, for the most part it was nothing like I would have hoped for. She was admitted to the hospital with lumbar pain, couldn’t get out of bed the morning before her 94th birthday. She was living alone with lots of assistance from me in her daily care. Short story, her bones were compressing, she moved to post acute PT for a month and it was determined she would not improve enough to live alone although she was back to using a walker. “I” had to make the almost impossible decision to admit her to the same facility but into long-term care aka nursing home. The next six months were some of the most horrendous days I could have imagined, mentally and physically for my mom. It was September 2020, the Pandemic, couldn’t visit except outside in the freezing cold, I thought her suffering couldn’t get any worse but it did. She passed alone in March 2021, I am sure thinking everyone had abandoned her. I heard the fear in her voice over the phone until she literally lost her mind alone with her physicality. The pain and fear she experienced will haunt me forever. Our healthcare system failed us at a time we needed them the most, but that is another story.
This was a beautiful article Ann, thanks so much for sharing something so personal! I am walking through dementia/Alzheimers with my mother now, I made the most painful decision in 2020 to move her into a Memory Care facility. It is such an excruciating experience but I could no longer care for her in my home. Now we are dealing with aggravation and rage, I’m meeting with her care team today to see what our options are medication-wise. This is NOT my mother she was always so kind and gentle but the disease is brutal. She is ready to be with Jesus and I’m praying he comes quickly even though I will miss her tremendously. This article really spoke to me during this time I am walking through. Thanks again for sharing!
I found your writing very comforting. My dad died July 9th of last year and it was so many things that I can’t make a list of them all. I think reading other people’s experiences with parental death is helpful. So many of my friends’ parents are passing away recently.
Thank you so much for sharing your personal experience. It has meant a lot to me.
Jody Miller Peeling
Thank you so much for writing your truth. I just recently lost my father unexpectedly. As you are aware, nothing compares to the death of a parent. Thank you so much for your compassion and honesty.
A beautifully written message that had me rethinking my own father’s recent death in a nursing home–the place neither of us ever wanted or imagined as a final stop. Finding gratitude for nursing and hospice staff did not come easy to me. Thank you for this realization shift.
Oh, Anne! This really touched my heart. I wish I could express how much comfort and peace, not to mention helpful advice, you brought me while helping my mother through her last difficult years on earth. I’m glad you were blessed with being there holding your father’s hand as he passed. My father and sister died unexpectedly and my mother died 4 hours after I left her bedside so I was not so blessed. I pray for you, your Mom and sister!
Anne- this is honest, authentic, powerful, hopeful and so very helpful. Thank you for sharing this personal experience and for the beautiful way you did it. My dad died suddenly in May 2020. It was very different than what you experienced in the way it happened but not necessarily in the lesson learned from it.
What a resonant piece! And one that couldn’t have been written without “boots on the ground”.
Beautiful narrative about your dad Anne. Tomorrow is my dads Birthday and I will try to celebrate it with him on earth as I know he sees me.
Being in the healthcare profession I thought I knew everything after working so many years with the sick and dying. When it came to the last days of my dads passing , who by the way was my moms caretaker,I went into total denial and never even realized it was happening so soon.
My dad also had MDS and I was taking care of him and my
mom and was taking him for his monthly then weekly blood transfusions.
Being an only child and trying to care for both of them I clearly now remember his last days septic with a high temp repeating to me all his private possessions and where to find the money to pay for moms future needs in and assisted living as she had Demetia. I learned a lot from his final days and also hers as well. I know I was in Kubler Ross’s denial stage through it all., but joe as the scenario played out in my head millions of times I learned valuable experiences through both their death and dying process. I can help others and have a strong connection to them that will always be with me.
Thanks for sharing you story. It’s nice to share memories with others in such difficult times.
I have his picture on my desk with his birthday cake and a little bear holding a birthday cake. My card to him will surely reach him on Pinterest as I send every holiday as both my dear mother and father are always with me.
I choose to remember my dads last minutes as peaceful. He received his last dose of morphine and we knew that he would pass soon after. We told him to go be with our mom. We knew he saw our mom because he had a huge smile on his face right before he took his last breath. About 3 hrs prior he was completely incoherent, limp and had slow shallow breathing. We had many struggles with the healthcare system the last few months. It had failed my dad. My dad was so ready to pass on ever since our mom passed a year prior to his passing. He was terminally I’ll so we knew the inevitable for several years.
Thoughtful, beautiful and touching piece. Thank you. I lost my dad in 2018 and I am also responsible for overseeing much of my mother’s caregiving while also working. Your commentary brought the feelings for sure, but your point about dying being a lot like living is so true. The good and the not so good. Thanks for writing this.
I’m so sorry for your loss. I hate that phrase, but it’s what you are supposed to say, right? However, I truly feel your pain. I lost both of my parents last year (six months to the day and almost to the hour apart). I was the primary caregiver for both of them and am still trying to figure out what to do with myself now. With my father, we kept him at home with hospice care. We knew he was dying and wanted him to be at home. But, no one tells you what it will truly be like. I’m so grateful for the time I had with him in his final days but the reality of it is that it’s not pretty. Also, hospice only came once a day to check on him. The rest of the time it was up to me and my sister to care for him. My mother couldn’t bring herself to go into the room and see him that way. I wish my last memories of him were happy and not filled with guilt because we couldn’t take away his pain.
My mother, on the other hand, passed away in the hospice unit at the hospital. She went into the hospital for a stomach/bowel issue and just couldn’t get better. After a week, the doctor told us she would not be going home. We weren’t prepared for that but it was a blessing because the care she received was much better. She was given pain medication as needed instead of on a schedule. She passed peacefully and while we were still at the hospital with her, the nurses took care of everything for us.
I just wanted to thank you for what you do for caregivers. You have truly provided a place for us to get help, advice, etc. Please keep doing what you do!
Thank you so much for sharing your experience. My parents and husbands parents are alive but failing in health and I am feeling anxious about the years ahead. It is very helpful to hear journeys like yours.
Anne, this brought tears to my eyes. It was so beautifully written.Remember when Daddy was dying he hung on til Jimmy got there. Very difficult time but you captured it well. Will encourage my kids to read. Love you, Aunt Beverly
Anne, I’m so sorry to hear of your dads death, but what an amazing insight you’ve provided, with your normal grace and bravery. Sounds like the apple didn’t fall far from the tree.
Such a beautiful, heartfelt tribute to your Dad. Thanx so many ch for sharing.
Wow. Thank you for such a powerful, eloquent and thought-provoking piece. Fascinating to hear how the experience shaped your beliefs, and glad it seems you were surrounded by empathy and professionalism.
As a former hospice and career medical social worker, your story is familiar yet beautifully and compassionately summarized to bring hope to others. Thank you for sharing. I am now walking the walk as a daughter and appreciate the comfort you offer. 🌹
This is so beautiful, and so much of it rang true to my experiences with my parents’ deaths – one had died in the hospital in an ICU room, and the other at home with us. We had such a similar experience realizing the non-linearity of death. Thank you for putting so much into words and sharing this.