I had never thought about death and how people should spend the time in the end deeply before participating in this program. It is always very difficult to relate myself to death and even relate death to anything else. But now, I feel I can count the steps of death and depict the anxious approaching of it with silent but absolute power.
I am the lucky one in this program because my patient is with me for the whole year. Let me call her Rachel. Rachel is non-verbal and lies on the bed all the time. She cannot do anything by herself and has late stage dementia. It was really frustrating initially because she was not responding much. If you said, “Are you ok?”, she would reply, “Ok.” But that’s it. I tried multiple things like telling her my life, playing music, reading the Bible and drawing. She would give me one or two words and then fall asleep. “Am I not doing enough?” “Is it even meaningful for me to be there?” I asked myself thousands of times those questions without any answers.
One time, Rachel was particularly awake. I held her hand and talked a lot about myself. As usual, I did not get any responses. When I was about to leave, I said to her, “I am leaving now.” Suddenly, she said, “Don’t leave.” I was really surprised and even thought that I misheard, “Could you repeat it?” This time, she looked at me and answered me clearly, “I said don’t leave.” Something powerful hit my heart immediately. I told her, “I love you. And I will come next week.” She answered, “I love you, too.”
It was the most significant moment for me in the whole program. Considering Rachel’s health issue, all the answers she gave me might just be automatic responses. But I still believe that there is something gradually building up between us. The volunteer coordinator emphasized many times that simply the presence and the company mean a lot to the patient. I never believed it before. Only until then, do I understand how cardinal human connections can be.
For a period of time, I had a cruel thought in my heart. Most of the time, Rachel just lied on the bed and stared at the ceiling. She used to love drawing and there are beautiful photos of her smiling among flowers. But now besides her breathing and heart beats, what is the difference between her and a corpse? I thought probably for her, death is a cruel kind of freedom. With the expense of all the sweet and bitter of life, she will be no longer limited by her body and the physical conditions. However, at this moment, I do not think that way anymore. It is amazing how people can still spark and shine by interacting with other people even in the end of their journey. She lit up my heart up with a few words and this light will last for a long time.
I really appreciate what this hospice program has brought me. Although I still do not know what I will do or how I should treat patients at the end stage of their life, I learned to believe in life’s power and what death cannot destroy and take away from us.