My dear mother had a massive stroke five days ago. The only ability she has is to open her eyes. Otherwise she is trapped in her body, unable to express herself in any way, and we have no way of knowing the extent of her suffering. She looks at us as we cry and speak of our love, but are we just adding to her pain? As a mother I know that the worst thing in life is to see your children suffer.
My mother was my accompanist on the piano as I sang from the time I entered my first solo and ensemble contest at age 14, up until she sent me a resignation letter about thirty years later. She had arthritis and was afraid she would make a mistake as I sang in church. (She never made nearly as many mistakes as I did). About 15 years ago I recorded a CD for my parents for Christmas. So yesterday I played the CD and sang along for her. Her eyes were open and focused on me for a solid half hour. She is unable to make a facial expression, but her attention allowed me to communicate with her in some small way.
She is in ICU attached to multiple IV's that contain medications, nutrition and hydration. There are inflatable wraps around her legs for circulation. There are boots on her feet to prevent sores. There are pillow and pads surrounding her to keep her in place because her body randomly moves in instinctive or reactive movements. Her right side is paralyzed and still, but her left arms flies up in distressed movements as she seems to try to remove the paraphernalia attached to her body. There is a feeding tube in her nose because she cannot swallow.
She pulled the feeding tube out last night. The feeding tube is keeping her alive. Is she communicating with us?
My mom has a living will. It says that if she in unconscious she wants no life-sustaining measures, but she is not unconscious. It says that if she in a terminal condition she wants no life-sustaining measures. But is a massive stroke a terminal condition? One doctor says yes because her body is shutting down and it may be a matter of hours or days. But another doctor walks in the room and says it is "in the realm of possibility" that she could get better. What is better? Is it being able to keep her eyes open all day? Is it being able to eat and speak again? No one knows. Every specialist has a different opinion and perspective. Is a feeding tube even considered a life-sustaining measure if she is still breathing on her own?
So if you have a living will maybe it needs to be much more specific. What if you are permanently non-communicative? What if you can never squeeze a hand or blink an eye again. Everything we do all day long as a humans is communicate our thoughts, feelings, and desires. Are you living when that is over?
It is too late to ask my mom. We thought everything was in place but life has shown us otherwise.