I have been writing this in my head since the day she arrived, because the moment I met her, I knew immediately there was a special place in my heart that had been saved for her. She was in her 40’s, and by age she was an adult, but cognitively, she was more like a child in her thoughts, in what little words she was able to verbalize and in the simple joys and pleasures that brought a smile to her absolutely beautiful face. Her eyes were a pale blue that opened wide when she felt happiness, and “happiness” was brought on by her family, memories of friends she made at her previous care facility and children’s nursery rhymes and songs.
When I first sat down with her father and her twin sisters, who were younger than her, I knew this was a person who was loved very much. The attention to detail in the care provided her by this family is something all should be lucky enough to experience. While I know hospice, and I know patient care and I feel confident about what I do for someone at the end of life, I do not pretend to know a patient more than their family or friends do, or even the people who cared for them before they came to us. So I welcome their knowledge, their opinions, their thoughts and their suggestions. This was a perfect example of that. Her younger sisters knew her very well and were able to convey to us the best way to care for her. She would require us to be sensitive to movement, sound, and touch. Almost everything brought her pain and discomfort and it was up to us to relieve that for her.
My first meeting with her was one I will carry with me for the rest of my life. She struggled with putting words together and forming sentences, but she was able to say my name and when I sang nursery rhymes to her, she sang with me and my heart smiled huge. I was in awe of the gentle way her sisters cared for her; the love they have for her is something rare, deep and beautiful. I found myself drawn to this family for many different reasons and I visited with them and their sister, our patient, quite frequently throughout each day she was with us. And when the family stepped away, I would sit at her bedside.
When I was a little kid, I wanted to sing but I couldn’t carry a tune. I couldn’t even sing “happy birthday” without being told it was best I didn’t sing out loud. I remember one Christmas; our school was putting on a musical performance. I wasn’t allowed to sing, and instead was put on set building, but I told my mom I was going to sing “The Little Drummer Boy”. The night of the performance, my mom was out in the audience and I was in the back helping with sets. When “my” song was about to start, I ran out to the stage and climbed up onto the back riser and joined the group. I mouthed all the words. I got in trouble that night by my teacher, made fun of by the other students and told I was an embarrassment by my mother. I never sang out loud again and even now, I usually just mouth the words to “Happy Birthday”.
But at her bedside, I sang “Twinkle, Twinkle little star” over and over and I didn’t care who heard me, and when she was able to join in I felt so much joy in my heart. I sang every nursery rhyme I could remember. Some days it was just she and I, some days I sang with her sisters and one day her dad joined in. And then the days moved along and she couldn’t sing back, but I continued singing to her, because I knew it brought her joy. On her last day with us, I was able to go and visit her. I sat at her bedside with her sister and together we sang one last round of Twinkle, Twinkle”.
She passed away today. I know she had good care by our team, I know we reduced her pain and discomfort and I know we gave her family a place to come to be at her bedside, to feel supported and to feel confident that someone they loved was being treated well. But I wonder if they know what they did for us, and for the purpose of this story, what they did for me. They all brought me joy, they reminded me to appreciate the simplest of things, and they let me know it was okay to sing off key. I will remember this sweet soul always.
We bathed her, we brushed her hair, and we put a white rose in her hands. As she was wheeled out to the car, we sprinkled rose petals on her and we sang "Twinkle, Twinkle Little Star" until she she was safely tucked in... and we stayed there until the car was out of sight. Good night sweet girl, no more sleeps, but also, no more pain.