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What is your biggest concern?

When we first brought Vivian home for hospice care nearly two weeks ago, my concerns primarily revolved around my ability to provide sufficient care to meet her needs and keep her comfortable – as is the intent of in-home hospice care. But every time the nurse spoke about allowing her to die naturally, my insides cringed. My biggest concern, the one truth that I couldn’t allow passed the lump in my throat when asked by the hospice staff during each visit “What is your biggest concern right now” was that I was afraid of being the one to find her dead. What would I do? How would I act? Could I handle it?

I forced myself to focus on the present and meet her day-to-day needs as they were. Upon her arrival her needs were to be fed, to receive her normal medications, and to drink water and be comfortable. We would spend time with her as frequently as possible without overwhelming her, and allowed the nurses, home health aids, and visiting angels to play their necessary roles as needed. Underneath the façade of my new, developing routine was the haunting fear of seeing her die. Following that fear was a steady dose of guilt for allowing selfishness to hover within me.

After Vivian turned the corner a couple of nights ago, my fear increased. By day two of the “turn” she was completely unconscious, jerking and twitching, and moaning steadily with every breath. She could not open her eyes when her brother came from Des Moines to see her. She could not grasp back when someone held her hand. All we could do was be there with her, talk to her, and provide the newly ordered “comfort meds” to reduce her pain and terminal agitations.

I went to bed last night and had to turn off the monitor because I couldn’t handle the deep moan that wouldn’t be soothed. My biggest concern, my biggest fear, shifted from finding her dead in the morning, to finding her still alive. It was difficult to shake this new fear, this new guilt, when I woke up wide awake at seven in the morning. Multiple scenarios passed through my mind, and I dreaded going downstairs to check on her. Yet, amidst that dread, I knew that if she were still with us, I wanted to change the music we played for her. Yesterday she listened to a Bach playlist on Spotify, but today, with Christmas coming, even though she may not be aware of the season, I felt that music from The Nutcracker would be appropriate.

Scott and I went downstairs together, noticing the lack of moaning, grabbed each other’s hands and proceeded to pull back the curtains to her make-shift bedroom. A mixture of dread and relief formed as we heard her lightly snoring, breathing, still with us. Scott gave her the prescribed comfort meds while I searched for a Nutcracker playlist for her to listen to while she lay there, then attended to other aspects of my morning routine: dogs, coffee, breakfast. Our Visiting Angel, Teiyana, arrived as scheduled at 10:00 a.m., washed her hands, and continued to read to Vivian as she’d done for the past two days. Music from The Nutcracker still played softly in the background.

Content that Vivian was resting peacefully while Teiyana read, I began writing this blog post and working on a cover letter for a Fellowship application due on Friday. Over an hour passed and I realized I should give more meds to Vivian to keep her comfortable. Her breathing was still steady and low as she accepted the 1ml each of morphine and lorazepam. Teiyana continued reading, then as noon came, she said her usual Goodbye, see you at six. Shortly after she left, The Nutcracker playlist came to an end.

Perhaps Vivian wanted to hear The Nutcracker one last time before meeting Henry in heaven. Now, I imagine her in his arms, ready to dance through eternity with him. No doubt The Nutcracker is still playing in the background.

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