Caregiver Perspective: Can You Speak?
I recently needed to use that phrase in a way I had hoped never to have to use it. No, my husband did not need CPR, but he was unresponsive. He had lost consciousness while being moved using a ceiling transport device and slipped out of the harness to fall four feet landing first on his shoulder followed by his head hitting the ground and bouncing up to slam into the door jam on the opposite side.
After hearing the thud and his caregiver’s cry of alarm, I ran to their location to find him unconscious and using a breathing pattern typical of someone who has had a seizure. His eyes were open but unseeing. My attempts to get through to him included shouting, “Can you hear me?” “Can you speak?”
Monitoring him and taking vital signs
I pressed his rescue alert button to call for help and continued to monitor him and take vital signs. As he began to arouse, I checked for his mental alertness. “Do you know your name?” Check. “Do you know where you are?” Check. “Do you know who I am?” Check. “Do you know what happened?” Not exactly. At first, he answered questions correctly. He even managed to refuse transport to the hospital (against my better judgment) because he wanted to finish cleaning up for the morning and felt he would be fine. But as the rescue squad left, I followed them out the door and told them not to be surprised if I didn’t call back if I noticed the slightest change that would allow me to take over control as his power of attorney.
Maintaining his mental independence
I try to walk a fine line with Lynn regarding controlling his life. I try always to let him make as many decisions about his care and what happens to him as I can, even though he often tries to push those decisions back to me. I strongly feel that he needs to maintain control of his life for as long as he can. He has already lost control of most of his body. He is a functional quadriplegic. He has almost no voluntary movement and must rely on someone else to do nearly everything for him. I don’t want to take away the one area of his life that he still has and that’s his mental independence. I am his power of attorney for convenience because he cannot sign documents literally. His hands don’t work; he can’t hold a pen, and he isn’t flexible enough to do it with his mouth, so I sign everything. However, the decision must still be his.
He only had minutes to decide
Last year, he needed to go on a respirator to save his life. Without it, he would die. However, I knew that if he went on the ventilator, he might never come back off, even after the acute condition healed due to his weakened diaphragm and lung capacity. I also knew he would not want to live a life connected to a respirator. However, I even knew that he was in excellent physical health other than for the acute condition presenting itself at that time, and if anyone could get off the respirator through hard work and determination, it would be Lynn. My inclination, therefore, was to allow them to put him on the ventilator and take the risk that he might not come off it again. But, I told them I would not sign the consent to do that until I could say to him myself the risks and give him that choice. I knew he only had minutes to decide, but he had to have that minute. They agreed. I told him. He agreed with me, and I signed. It all worked out as I thought and he’s fine now, but he needed that choice to be his. He needed to have his voice heard.
He needs to try his way first
I often have a tough time letting Lynn make his own decisions. It’s very frustrating to me. I have a medical background, and I can objectively see what’s in his best interest. I like to know the facts of a situation and face it head-on, decide and get on with it. On that front, Lynn and I could not be more different. He will delay a decision until the decision no longer has to be made. Instead, the decision became someone else’s responsibility. Drives. Me. Nuts. He won’t talk about it; doesn’t want to hear about it; won’t read about it; doesn’t want to see me reading about it—total denial. He knows I’m going to research it anyway. He knows I’ll thoroughly check it out; I’ll advocate for what I think is right, and step in where I think it’s not. He trusts my decisions to be right, but he doesn’t always go along with them. He admits that he’s probably wrong in refusing my recommendations, but says he needs to try it his way first to know that the other option wouldn’t work. I try to respect that choice and hold my tongue at those times because it’s his life after all.
Have I made sure he is being heard?
So sometimes when I ask, “Can you speak?’ I’m asking as a medical assessment to see if his speech is present or garble or makes sense. But at other times, I have to remember to ask myself, have I allowed him to speak? Have I made sure he has been allowed to be heard by those around him who may only listen to my voice speaking for him? When that happens, I must remember to turn to him each time and say, “Can you speak?”