“It has always struck me how the most powerful and wealthy can have almost anything they desire, yet our most valuable commodity, the time we are given, remains elusive to all. When Steve Jobs passed away in 2011 after a long battle with pancreatic cancer, I remember thinking that this man, who changed our world and the way we communicate, had access to any form of healthcare imaginable and yet even he couldn’t alter the time left on his clock.
A year after graduating nursing school, I was sitting in my old bedroom in my parent’s house beside my dad, desperately taking a mental record of every part of his face while hearing the tick of the wall clock behind me. It was an intrusive reminder that time was almost up. I had taken a leave of absence from my nursing job to care for my dad as his hospice nurse. Clouded by anticipatory grief and caregiver fear at the time, years later, I look back at that difficult season as a rare and precious gift.
Upon discharge from Memorial Sloan Kettering Cancer Center a few weeks earlier, my dad was forced to hear the inevitable words he had fought so hard against: ‘I’m sorry, there are no additional treatment options.’ He spent 17 months battling Mantle-Cell Lymphoma, a rare and aggressive form of Non-Hodgkins Lymphoma and he would’ve kept fighting as long as they’d let him, but it was time to go home. He had made it through a ruptured spleen, an autologous stem-cell transplant, and dozens of chemo treatments. The valiant fight was over, and although we knew it was coming, we were unprepared to shift into acceptance.
Seems odd, doesn’t it? Death is guaranteed, we all understand that. I’ve come to learn that acceptance is a very different thing.
My brother, a college art professor, had also come home for those final weeks. Together, we helped my dad pull off some last-minute wishes. Changing out the lightbulbs was on a to-do list so my mom wouldn’t have to worry. This was an absolute priority. A slow, quiet, final walk through Home Depot where my chest felt so heavy for him, it was as if I was holding my breath. Materialistic things meant nothing to this man, but he shared how much he‘d miss working with his tools. Towards the last week of his life, the medication schedule had to be altered to find and maintain a comfort level. As his hospice nurse, I received orders from his doctor to administer his medications and comfort care. His hospice team would stop by every couple of days or on call as needed.
I went from giving him medications every 6 hours, to every 4 hours, to every 2 hours around the clock over those last few days; I think I slept with one eye open in between doses. I was filled with worry that he would wake up feeling too uncomfortable, yet terrified that he would drift off into a forever sleep. Terminal agitation, which can occur during the active dying phase, crept in on the very last night and taught me that it’s a blessing to see a loved one rest comfortably. As much as you want them to stay, there is a point when it’s better they go.
I recall the moment I realized we had said our final goodbye in the night. My dad had woken up confused and uncomfortable, so my brother and I had calmly told him that it was okay for him to go, reassured him that we’d be alright even though we didn’t believe it at the time, and he nodded his head. Conflicted by my relief that he went into a deep sleep and my fear that time was slipping away, caregiver guilt set in and grabbed hold of me and stayed for quite some time.
I share these details because nobody talks about this. Do you know the wishes of your loved ones? How would they react if you asked them? Uncertainty and the unknown carry fear for many of us. Of course it makes us uncomfortable, but that’s often where acceptance can be found. I hope our story will encourage someone to share their wishes with their family. It’s all in the details and trust me, it would’ve been much easier to discuss it all ahead of time. Have a sit down at the dinner table or take a more casual approach and open up a discussion, even with kids or grandkids around. Maybe it will evaporate some fear for them and normalize the reality that we all have a certain amount of time on our clocks. Maybe it will teach kids that it’s okay to talk about hard things with each other.
On that last day of my dad’s life, I felt the remaining warmth from the sun setting beyond the familiar bedroom window. Alone with him, I whispered that he had done such a good job fighting. I didn’t want to leave the room even though I hated everything that was going on inside it; I hated that cancer was stealing him before my eyes and there wasn’t anything I could do. The open window told me spring had come to New York. Those strong final rays of sunlight provided undeniable evidence and reassurance of that new season outside, such a strange contrast to the ending occurring inside. A few hours later, in the early evening of April 19th, peace came into that bedroom. As the sun went down my dad’s time here with us stopped, and somehow, acceptance was found.
Throughout that time as my dad’s hospice nurse, I barely acknowledged I was tired — adrenaline is quite powerful. Over time, the tests, medications, symptom management, my caregiver worry, and the view of watching him struggle to say goodbye to family and friends faded away. What replaced it is a genuine appreciation for every moment I had with him. The tools he left behind? They stayed in his basement workshop for 13 years. We finally donated most of them while cleaning out my mom’s house this past summer. She’s in a nursing home after suffering a stroke.
All the materialistic stuff? You can’t take it with you. Time? You can’t get it back. Here, right now is all that we have. How do you want to spend your time and with whom do you want to spend it with?
As much as it is a privilege to help a baby enter this world, I consider it equally a privilege to comfort someone as they leave this world. I consider myself lucky for those difficult last moments between my dad and I. They were as simple as the two of us sitting together without the need to say a word. That was his gift to me. Better than anything he could’ve bought. And my gift was in being fully present for him. It changed me. I learned the value of time. I found beauty in simplicity. I am honored I got to see my dad out.
One of the most delicate and beautiful relationships we can experience is caring for those who once cared for us. Embrace them with love, knowing that some day, our turn too will come. And donate all the stuff along the way.”
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This story was submitted to Love What Matters by Linda Scruggs. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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