Some time back, and out of the blue, my sedated and intubated patient began tapping his hands on the side of his bed to get my attention. I realized he was trying to communicate something to me, but since he was ventilated and on life support, he was unable to speak. I quickly found a black marker and some paper, unrestrained him, and allowed him to write me three pages of what was on his mind. It was very personal, and it was me that he wanted to see it. I was then able to comfort him in a way that I would not otherwise have known he needed to be comforted, had he not had that opportunity. I asked him if I could keep the note, and he adamantly shook his head yes. I now have those precious pieces of paper tucked away in a safe place. It was no coincidence what he wrote, no coincidence that he wrote it to me, and certainly no coincidence that he did that while I was his nurse.
Since that time, I have often looked at my patients more curiously, and wondered just what they would say, if they could speak. I’m sure every nurse has a pretty good idea what our patients would say. So, inspired by my note-writing patient from long ago, I’m now going to take a stab at it.
Dear Family Member / Friend / Visitor,
First of all, I can hear you. I’m not deaf, and you do not need to get 3 centimeters from my face and scream at me. There are a lot of strange noises in this place, and getting appropriate restful sleep is really not possible. If I am asleep when you arrive, could you wait until I wake up to visit? I may have just fallen asleep.
Please do not discuss my disease, my diagnosis, my prognosis, and my very personal medical issues with others in the room in front of me. Again, I’m not deaf. When you ask every medical professional who walks in the room what is the latest going on with my care, that may not be something I wanted to share with you. I may still be in the process of accepting it myself. I have appointed people I want to know about my personal and private health and decision-making issues. You may not be one of those people. So please, respect my privacy and stop asking questions. And please stop talking about me as if I cannot hear you. I may not be able to respond, but I can hear you. And if you ARE the person I appointed to make decisions for me, please remember and respect my wishes. I may not want to be shocked, pumped full of chemicals, and have all of my ribs broken from chest compressions. Again, please remember my wishes – whatEVER they are.
When a physician or nurse enters the room to examine me, and pulls back my covers and parts of me are exposed that I would never have allowed you to see when I was not hospitalized, please respect me and walk out of the room. If the medical team has not pulled the curtain and closed the door, please ask them to do so. I would really, really appreciate that, because they all too often forget, and others walking by curiously peek through the window and see my body exposed. And if you return, and they have left me uncovered, please cover me. I’m embarrassed and humiliated. I might even be cold. Please cover me up quickly.
I am very sick and feel crummy. I appreciate you visiting me, but I may just want to rest and recover. When the nurse asks you to leave the room, please do not report her to her manager and complain about her, or treat her disrespectfully or rudely. She promised me when we were alone that if I was tired and winked at her, that was her cue to ask you to leave so that I could rest. She was willing to be the “bad guy” on my behalf so that I did not hurt your feelings. She’s really, really good to me. I hope that brings you comfort.
Those wounds that the nurse cleans and dresses, often several times throughout her shift, are excruciatingly painful. You are not aware of this because she does not make you see how very bad my wounds are, and cares for them when we are alone. I know that when the nurse gives me pain medicine, it often makes me fall asleep, but please do not insist that I not receive them so that I am awake for you to visit with me. I hurt. Really badly. Please let me have my pain medicine. Please don’t make me suffer.
When the physician gives the news that I am going to die, please do not hate him for telling you the truth. Please do not get angry when he asks you about what measures I would want done at the end of my life. He is asking because you know me better than he does. And please, remember what we discussed, respect MY wishes, and do not keep me alive because those are YOUR wishes. It’s not about you right now. It’s about me. It’s about my wishes. Please, don’t make me suffer. I may not want to suffer. I may have suffered enough.
It is okay to tell everyone that I am a “fighter” and a “survivor.” I am. However, when the good Lord calls me home, and I have accepted my diagnosis AND my prognosis, please let me go. Please do not guilt me into trying to keep fighting. I might be too tired. I might be ready to let go. Instead of telling me to fight, I’d really just like to know that YOU are going to be okay. I’d like to hear you laughing about good times we shared. I’d like to look through pictures. I’d like to know I was a good mom, a good dad, brother, sister, a son, daughter, or a friend. I really need to hear that. Will you whisper that to me? – Instead of “Fight! Fight!” Please, tell me it’s okay if I go. Please?
Please do not act suspicious of the nurse when she asks you to step out and she closes the curtain. She is very protective of me, and wants to be sure I get appropriate rest. At times, I may need to be cleaned up, and she is respecting my privacy and allowing me to keep my dignity. She really is good to me. When we are alone, she and her colleagues tell me what a nice family I have, what a good job I did, and they give me a back rub while I’m on my side, clean me well, and put lotion and powder on me so that I feel fresh and clean. That means so much to me. They make sure my linen is clean, and that I am comfortable and warm enough. Sometimes, I can see that it hurts their backs to turn me. I so very much wish that I could help, but I am just too weak. They joke with me, tell me about their families, and even give me hugs when I am sitting up. When I undergo any painful procedures, they make sure I don’t feel any pain. They never leave my side. They do such a good job. They are angels of mercy. Please don’t be mean to them when they are being so good to me.
When you put the call light on, please do not get angry if my nurse is not immediately in the room. She is often in another room, caring for her other patient, reassuring them, and getting coffee for their family members.
My nurse may even be holding a hand and whispering, “You were a good Mom!” to someone else who longs to hear those words. I’d really like it if you would just hold my hand until she gets here, and please – tell me that you are going to be okay, won’t you? I’m going to fall asleep now. If you must leave, I understand.
Don’t worry – I won’t be alone. You see, I have an incredible nurse. Goodnight 😉
(For anyone curious about what the note said that my patient wrote to me – He acknowledged the things that his loved ones said to him. It is likely that they went home feeling defeated, and wondering if he heard them. He did. He heard them clearly, and he had some one-on-one time with God, and he got right with Him. I was able later on, to share that with them, and it brought them great joy! So if you have a loved one who is in a coma right now, on life support, and not responding to you – Please know, though they may not be able to respond, they can hear you 😉 And no one, will ever, ever convince me otherwise!)