The first time

I was 7-years-old the first time I experienced death. That day remains vividly in my memory though I am sure that nearly 4 decades later, some of the details may be off. It was a Sunday morning in May, 1987. As I exited my bedroom, I noticed that Dad and Mary’s bedroom door was closed. Soft, muffled voices and crying came from the living room. My little girl feet, hair matted from a good night sleep, padded down the hall. There stood my grandparents in the living room, my dad sat in a heap on the couch, weeping. Grandpa had a stethoscope around his neck. I find this odd as he was an engineer, not a nurse or a doctor, but perhaps in the late 80s, people actually had to learn to auscultate their blood pressure. “Daddy, why are you crying? Where is Mary?” “She is sick Scoot and still in bed.” “Can I go see her?” “No, you can’t.”

The rest of that day is a bit of a blur. I remember playing in the driveway, my little pink boom box playing the soundtrack from Stand By Me. Later I went to our neighbor Pam’s house. I’m pretty sure she drew my portrait that day. I was wearning a pink V-neck sweater. My brother must have been there and surely my mother came to pick us up at some point. I remeber feeling profoundly sad and confused. At her funeral, she lay in the open casket wearing the cream colored dress she wore the day she married my Dad. A single shasta daisy, her favorite flower, was held in her folded hands across her chest. She was 28-years-old. The nightmares came later. I often woke in the night with the feeling her body was in my bed. In time these dreams faded but to this day I can still close my eyes and remember.

Since then…

Since 1987, I have experienced many other deaths around me. My classmate, Jessie, who died suddently while at school from a congenital heart defect. My grandparents, my father, my father-in-law, my cousin’s little boy. Each situatation was sad and unique, some making more sense than others. While for each of these deaths I was involved to some degree, it was at a distance. I wasn’t necessarily providing hands on care during their dying process.

The death of my father was sudden and tragic though not a huge surprise to me. The loss of him was extremely painful, what I can imagine would feel like being punched so hard in the chest that you can’t breathe. I remeber falling to my knees the moment I heard of his death. When my grandmother passed I recall having a conversation with her at home. I asked if she was tired to which she replied through ragged breaths, “yes.” Reluctantly she agreed to go to the hospital after I promised her that she could be more comfortable, that she didn’t have to suffer. She died several days later. Her death made sense to me as she was old and frail.

In the thick of it

But this death was different. I was in the thick of it, right alongside my Uncle, helping to care for my Aunt in her final days. He had made the decision to forego further aggressive therapies to treat and manage her leukemia. Bravely recognizing these interventions were no longer helping to improve or maintain her quality of life, he made the choice for comfort care. As the cancer robbed her of her physical body, the dementia stole her mind.

He brought her their Orlando home from their summer home at the Lake of the Ozarks. Her final weeks were spent surrounded by friends, family and her beloved dogs (more on that in a later blog post). I arrived on a Saturday. That day she sang and danced. She enjoyed visitors. As the week wore on, her strength diminished. She slept often, stopped eating and had minimal fluid intake. For days she only left her bed to use the restroom and this became more and more difficult.

Preparing

My uncle and I talked many times about what to expect, that everything she was experiencing and doing was an expected and normal part of the dying process. I advised when her prognosis went from days to hours. Eventually it became to difficult to manage her at home. We experienced a “situation” that prompted us to call the hospice nurse for help at 2AM. In the midst of the “situation”, he looked at me and said, “I can’t do this anymore. It is just too much.” Admittedly, I was begining to feel like I could not continue to manage her at home either. This was a tough pill for me to swallow as this is what I do as a hospice and palliative care nurse. But I knew it was best for both of them to transfer to a hospice facility. Moving her there afforded us the opportunity to just be present with her providing love and comfort while the amazing hospice nursing staff took care of the rest.

Final moments

In the end, she was peaceful and he was by her side. As her breathing changed just after midnight, I knew her time was short. I prepared him as best I could for her last breaths. His heart breaking he said, “I can’t watch.” I encouraged him to close his eyes and just hold her but he remained brave and strong, coaching her through, giving her permission to go. He reminded her of his love for her. “I love you, Laurie, to the moon and back.” Her eyelids fluttered open and it was clear that her spirit had left her body. And in that moment when it was declared she was gone, he broke. For a moment it seemed as if he might actually drown in his grief. I was so grateful to be there in that moment bearing witness to such love. What a privilege.

How do you do it?

People often ask how I do my job. Doug asked me several times that week while I helped him care for Laurie. The answer is simple. Because they aren’t my family. Of course I still care and feel but I can disengage my heart more readily. Walking away from this experience I have an entirely new perspective. Confident this experience will make me a better, more empathetic clinician I can guide patients and families differently than I did before. I have street cred now.

The Lord’s promises

After Laurie died, we gathered our things and journeyed to the car. The hospital walls were decorated with the Lord’s promises. That one day, he will wipe away all our tears and there will be no more suffering.  I believe Laurie is in heaven as we speak, completely and totally healed and restored. He will bless us and keep us, his face will shine upon us and he will be gracious to us. He will bring us peace. That is how I keep going. This work is an opportunity to be his hands and feet and to bring his blessings, light and grace during the most difficult of times. And in return, I am blessed beyond measure.